Category: #alzheimers

Engage your loved one who has had a stroke or has a dementia, don’t be a babysitter!

Posted on September 15, 2022 by - #alzheimers, #caregiver, #caregivers, #dementia, #parkinsonsdisease, #strokesurvivor, Parkinsons, Stroke Survivor

Think about it. Are you really having a conversation or are you just placating them so that you can get crap done? As the care giver or care partner are you even aware that your care receiver has needs that you can easily meet while you are handling tasks? I get it. A lot of us are task-oriented and do not want to be bothered with other things while we are doing our tasks. That would be great if our care receiver was not a human being. Take the time to talk with them. September 14, 2022

When you are doing basic tasks

Most of the tasks you will be doing, will not take a lot of brain power or concentration. Let the stroke survivor help. Let the person with dementia help. Some tasks will take brainpower and you will need quiet time to concentrate, but not a lot of them. It does not take brain power or concentration to do laundry, wash dishes(place in or take out of dishwasher), cook something, sweep or mop, etc. You can be engaging your care receiver by talking, telling stories, or singing together. Paying bills, comparing EOB’s with medical bills and figuring things out, will take concentration and brain power. You do need quiet time for those types of things. To get that quiet time, engage your loved one before you get started. Take 10-15 minutes to be fully present with them.

Your loved one can sense your attitude

Remember, they can sense your attitude and feelings towards them even if they have any type of dementia. If they have a physical disability or injury, and they need a little help, they still like to be engaged in conversation or stay up-to-date with what is going on with you, the community, and the world. Let your loved one do whatever they can do, even if it takes three times as long. We talk a lot about dementia patients, but let’s focus on care receivers that have a physical disability, such as stroke survivors. Stroke survivors need repetition and to continuously try things. It takes them longer but they can get better and better.

They need help and encouragement.

    • Encourage them to do the exercises they have been given by their physical or occupational therapists. You have to rewire the brain and movement is key.
    • Allow them to do what they can do, even if they struggle. Unless they ask for your help, let them keep working on it. Be helpful, but not overbearing.
    • You may have access to a social worker or counselor, and use them for help and resources. An occupational therapist can help with identifying home modifications that would help.
    • New stroke side effects may arise after going home. Be alert and contact their doctor.
    • Understand that sometimes, the stroke survivor may have a little setback, before they move forward again.
    • Always push past the plateau. There may be a time (3-6 months after a stroke) that “getting better” seems to level off. It may seem that way, but the brain is still healing and working. Keep on, keeping on. Changing exercises or rehab strategies may help, too.
    • There may be emotional changes after a stroke. There may also be outbursts of laughing or crying due to pseudobulbar affect.
    • Report falls to doctor
    • Don’t give up, keep striving for the best. (Independence depends on this.)
As a care giver, learn as much as you can about your care receiver’s stroke. What areas of the brain were affected? What do those areas control? What to expect physically, emotionally and mentally.

Some of the symptoms that a stroke survivor may experience:

    • Loss of control of movement &/or feeling in some parts of the body (This usually occurs on the side of the body opposite from the side of the brain affected.)
    • Changes in muscle tone on the affected side of the body
    • Involuntary muscle contractions
    • Difficulty sitting, standing or walking
    • Reduced ability to balance
    • Problems with speaking and/or understanding speech
    • Confusion and/or poor memory
    • Decreased control over bladder, bowel or both
    • Difficulty swallowing
    • Reduced control over emotions
The following is from Johns Hopkins Medicine

What are the effects of stroke?

The effects of stroke vary from person to person based on the type, severity, location, and number of strokes. The brain is very complex. Each area of the brain is responsible for a specific function or ability. When an area of the brain is damaged from a stroke, the loss of normal function of part of the body may occur. This may result in a disability. The brain is divided into 3 main areas:
    • Cerebrum (right and left sides or hemispheres)
    • Cerebellum (top and front of the brain)
    • Brainstem (base of the brain)
Depending on which of these regions of the brain the stroke occurs, the effects may be very different.

What effects can be seen with a stroke in the cerebrum?

The cerebrum is the part of the brain that occupies the top and front portions of the skull. It controls movement and sensation, speech, thinking, reasoning, memory, vision, and emotions. The cerebrum is divided into the right and left sides, or hemispheres.

Depending on the area and side of the cerebrum affected by the stroke, any, or all, of these functions may be impaired:

    • Movement and sensation
    • Speech and language
    • Eating and swallowing
    • Vision
    • Cognitive (thinking, reasoning, judgment, and memory) ability
    • Perception and orientation to surroundings
    • Self-care ability
    • Bowel and bladder control
    • Emotional control
    • Sexual ability
In addition to these general effects, some specific impairments may occur when a particular area of the cerebrum is damaged. suffered a life-threatening stroke that left half her face paralyzed, a devastating loss for a talented

The effects of a right hemisphere stroke may include:

    • Left-sided weakness or paralysis and sensory impairment
    • Denial of paralysis or impairment and reduced insight into the problems created by the stroke (this is called “left neglect”)
    • Visual problems, including an inability to see the left visual field of each eye
    • Spatial problems with depth perception or directions, such as up or down and front or back
    • Inability to localize or recognize body parts
    • Inability to understand maps and find objects, such as clothing or toiletry items
    • Memory problems
    • Behavioral changes, such as lack of concern about situations, impulsivity, inappropriateness, and depression

The effects of a left hemisphere stroke may include:

    • Right-sided weakness or paralysis and sensory impairment
    • Problems with speech and understanding language (aphasia)
    • Visual problems, including the inability to see the right visual field of each eye
    • Impaired ability to do math or to organize, reason, and analyze items
    • Behavioral changes, such as depression, cautiousness, and hesitancy
    • Impaired ability to read, write, and learn new information
    • Memory problems
What effects can be seen with a stroke in the cerebellum? The cerebellum is located beneath and behind the cerebrum towards the back of the skull. It receives sensory information from the body through the spinal cord. It helps coordinate muscle action and control, fine movement, coordination, and balance. Although strokes are less common in the cerebellum area, the effects can be severe.

 Four common effects of strokes in the cerebellum include:

    • Inability to walk and problems with coordination and balance (ataxia)
    • Dizziness
    • Headache
    • Nausea and vomiting
What effects can be seen with a stroke in the brainstem? The brainstem is located at the base of the brain right above the spinal cord. Many of the body’s vital “life-support” functions such as heartbeat, blood pressure, and breathing are controlled by the brainstem. It also helps control the main nerves involved with eye movement, hearing, speech, chewing, and swallowing.

Some common effects of a stroke in the brainstem include problems with:

    • Breathing and heart functions
    • Body temperature control
    • Balance and coordination
    • Weakness or paralysis
    • Chewing, swallowing and speaking
    • Vision
    • Coma
Unfortunately, death is possible with brainstem strokes. Over time, it may be harder for the stroke survivor to stay motivated during recovery. The two main contributors to this are apathy and depression. Apathy is a loss of motivation, concern, interest, and emotional response after a stroke. Feeling sad after a major life event that turns your world upside down is normal, depression seems to affect 30-50 percent of stroke survivors. Signs of depression include feelings of hopelessness and sadness that do not go away.

FYI – Help stroke survivors to stay motivated.

Set relevant and achievable goals Address the emotional challenges and get help with medications and talk therapy Help the stroke survivor understand about their stroke, the changes, the rehab, the plateau, etc. Have a consistent routine, do it no matter how you feel about it Find what motivates them

When motivation fails, discipline takes over – just do it

Pat

Why does your own health take a dive when you are a family caregiver?

Posted on September 8, 2022 by - #alzheimers, #caregiver, #caregivers, #dementia, Caregiver Information

We have seen the studies. We have experienced a decline in our own health all the while ignoring our own health needs. We know that we need to take care of ourselves so that we can take care of our loved ones. We know that caregivers can often wind up in worse physical shape than those they are caring for. Still, we do nothing for ourselves. Why? September 7, 2022 We are stubborn people. We all  believe that we can handle “this.” We must handle “this.” You may even hear and believe that “God doesn’t give you more than you can bear.” That is not a true statement. Go read it. 1 Cor. 10:13. God will not let you be tempted more than you can bear. He will provide a way of escape. God will give you the grace you need in every situation. His power helps us use the resources that we have and can get to handle whatever is in front of us.

Try for a both/and solution and not an either/or solution when you are the caregiver

Do we think that we have to suffer or put our own lives on hold to help or care for someone we love? You see, that is more of the “either/or” thinking and not the “both/and.” Get out of the “either/or” thinking mindset. Get into the “both/and” types of thinking. If you have only thought of the “either/or” possibilities, then you can learn to think of a “both/and” possibility. More on this later.

What attitudes and beliefs do you have that stand in your way?

    • Do you think you are being selfish if you put your needs first?
    • Is it frightening to think of your own needs? What is the fear about?
    • Do you have trouble asking for what you need? Do you feel inadequate if you ask for help?
    • Do you feel you have to prove that you are worthy of the care recipient’s affection? Do you do too much as a result?
Really think about the above questions. It may be time to take 30 minutes to think and talk to yourself. Writing it out helps you to get to the real issues/answers.

Here are some ways that your own mind will kick your ass when you are wondering what your caregiving responsibilities are…

    • I am responsible for my parent’s health.
    • If I don’t do it, no one will.
    • If I do it right, I will get the love, attention, and respect I deserve.
    • Our family always takes care of their own.
    • I promised my father I would always take care of my mother.
Your own negative self-talk will get you into trouble. Just because you think it, does not make it true or right. Circumstances may have changed and you can no longer keep your promises. Don’t hold yourself to impossible standards made in the heat of concern/passion. Our behavior is based on our own thoughts, beliefs, attitudes, and misconceptions. Remember, your feelings can and will lie to you. You may believe something that is simply not true. Half-truths are what make up great lies. You do get to choose what you will or will not do. You do not get to choose what you can and cannot control. That is not the way life works. Yes, it sometimes is awful, frustrating, and maddening. What can you truly control? Your attitude. Your own actions. Your self-talk. Your gratitude. Your own mental and physical fitness. Your eating habits. Your sleep. Your boundaries. What you prioritize?

Things you do not have control over:

    • You can’t control other people (what they do or what they say).
    • You can’t control how other people see you.
    • You can’t control what happens to other people.
    • You can’t control your thoughts or feelings, they just are. You don’t have to act on them, though.
    • You can’t control the outcome.
    • You can’t control other people’s happiness.
    • You can’t control the past.
    • You can’t control the future.
    • You can’t control that change is inevitable.
Stop wasting your energy and time on things you cannot control. Focus on what you can control and actually make a difference. Will you reduce your personal stress? The problem isn’t always the problem. The problem is how we perceive the problem. The meanings we attach to the problem. The following information is from Family Caregiver Alliance

Your level of stress is influenced by many factors, including the following:

    • Whether your caregiving is voluntary. If you feel you had no choice in taking on the responsibilities, the chances are greater that you will experience strain, distress, and resentment.
    • Your relationship with the care recipient. Sometimes people care for another with the hope of healing a relationship. If healing does not occur, you may feel regret and discouragement.
    • Your coping abilities. How you coped with stress in the past predicts how you will cope now. Identify your current coping strengths so that you can build on them.
    • Your caregiving situation. Some caregiving situations are more stressful than others. For example, caring for a person with dementia is often more stressful than caring for someone with a physical limitation.
    • Whether or not support is available.

Steps to Managing Stress (Before you get to caregiver burnout)

    • Recognize warning signs early. These might include irritability, sleep problems, and forgetfulness. Know your own warning signs, and act to make changes. Don’t wait until you are overwhelmed.
    • Identify sources of stress. Ask yourself, “What is causing stress for me?” Sources of stress might be that you have too much to do, family disagreements, feelings of inadequacy, or the inability to say no.
    • Identify what you can and cannot change. Remember, we can only change ourselves; we cannot change another person. When you try to change things over which you have no control, you will only increase your sense of frustration. Ask yourself, “What do I have some control over? What can I change?” Even a small change can make a big difference. The challenge we face as caregivers is well expressed in the following words modified from the original Serenity Prayer (attributed to American theologian Reinhold Niebuhr):
  • “God grant me the serenity to accept the things I cannot change, Courage to change the things I can, and (the) wisdom to know the difference.”
    • Take action. Taking some action to reduce stress gives us back a sense of control. Stress reducers can be simple activities like walking and other forms of exercise, gardening, meditation, or having coffee with a friend. Identify some stress reducers that work for you.
Pretty good information, huh?

Have you considered the real reasons that you do not take appropriate care of yourself?

    • You haven’t made your health a priority.
    • You don’t feel you have enough time to do all you “need” to do.
    • You feel guilty taking some time away from your loved one.
    • You don’t have the energy.
    • You have reached the burnout stage.
    • You won’t accept things as they are, right now.
    • You won’t put yourself in the mix of things to handle.

10 Health Problems Caused by Chronic Stress

    • Weakening of the immune system, which increases vulnerability to colds and other infections
    • Mental health disorders (e.g., anxiety, panic attacks, depression, mood swings)
    • Cardiovascular problems (e.g., high blood pressure, elevated heart rate, high cholesterol levels, increased risk of heart attack and stroke)
    • Metabolic disorders (e.g., metabolic syndrome, insulin resistance, diabetes, obesity)
    • Gastrointestinal issues (e.g., ulcers, vomiting, diarrhea, constipation, heartburn, chronic bowel disorders)
    • Muscle tension and pain (e.g., backaches, neck pain, jaw pain, tension headaches, migraines)
    • Chronic fatigue syndrome
    • Respiratory problems (e.g., shortness of breath, rapid breathing, exacerbation of existing lung diseases like asthma and chronic obstructive pulmonary disease)
    • Worsening of skin conditions (e.g., eczema, psoriasis, acne, rosacea, hives)
Which of these have you noticed in your own life? As you can see, you have to decide if your health is worth taking care of so that you feel better and are able to be the caregiver your loved one needs. Prevention is much easier than fixing a problem after it has happened. You do deserve to be happy and healthy. You do deserve to provide better care and get your life back. My services can help you achieve your goals. Pat

What are the two things that, usually, trigger a need to move a loved one into an assisted living facility (especially a person with a dementia or Alzheimer’s disease)?

Posted on August 31, 2022 by - #alzheimers, #caregiver, #dementia, Caregiver Information

I know, it is usually more than two things, but, these two, in particular, seem to ramp up the need for 24/7 in-home care or transitioning to an assisted living facility. Toileting and Bathing. Some helpers/caregivers can help a spouse or partner with toileting and bathing duties with no problem, but when it comes to an aging parent, they can’t seem to handle those areas. Some are willing to learn how to do these things safely and some are not going to do them at all. Still, others will do it in an emergency situation, but not all the time. Whatever you choose is the right decision for you. August 31, 2022 Emotions, feelings, physical strength, and preparedness are all important factors in helping someone to toilet or bathe. Embarrassment, Stress, Rebellion, Stubbornness, Shame, and whatever else shows up will have to be dealt with respectfully. Everybody will feel embarrassed.

Helping Your Loved One with Privacy and Personal Hygiene

We all want to do our private business by ourselves. Imagine, that you have had surgery on your right shoulder and your left arm is hooked up to an IV bag on a pole. Now, imagine that you have to go to the bathroom badly and it is not to pee. Can you wait on a nurse? No. A side note, it is so much easier to let someone, you don’t know, who is trained in helping a patient poop and then clean their bottom, help you than it is to let a partner, spouse, or loved one help you. I was so embarrassed to have someone that I knew and loved to wipe my bottom. It was an awful feeling. The person doing the wiping was great and it did not seem to bother her as she said, “I’ve cleaned my kids’ butts, no big deal.” Pooping is a normal bodily function. Peeing is a normal bodily function. Why did I wig out over having to go? Because I could not take care of my needs at the time. I was vulnerable. I was embarrassed. I needed help. I am the one that helps others, I don’t need help. Although, I am not sure that I could wipe someone’s bottom that I love or care about on a regular basis. I probably could in an emergency, but not all the time. I guess we really don’t know what we will or won’t do until we are put in the situation. I have learned to never say never. Some of you are thinking, “Well, if you did it once, then you can do it again and again.” Probably, but I don’t want to!

You better be strong and patient

It takes time, effort, and physical strength to help a loved one toilet and bathe. It takes someone that knows how to do these things appropriately and safely. It takes someone that is patient and kind throughout the entire process. Will both of you get over the embarrassment? If you can, then all the better to help your loved one be as independent as possible. Realizing that some help with toileting and bathing will help your loved one stay at home longer.

Safety needs for older folks and memory care folks

Grab bars are a must for the toilet and shower/bath. A raised toilet seat will help too. Non-slip decals need to be placed in the tub. Brighter light is a plus. Some bathrooms need to be heated with a ceramic floor heater or an oil-filled radiator heater. Be sure whatever you get, is appropriate and safe for a bathroom. Schedule regular bathroom breaks every 2 – 4 hours. Give them time to get there. Pack your patience and a loving demeanor along with a loving tone. Give them directions and let them know what you are doing.
    • The toilet seat is right behind you. Squat down slowly to sit.
    • I am going to help you stand up now. Scoot your butt forward.
    • Lean forward and put your hands on my forearms when you are ready. Then ask them to raise/stand up. (Do not pull on their arms or legs. Hold on to the trunk of their body or their hips.)

Learn to wipe properly

If it is the opposite gender from you, learn to wipe properly. For example, an adult son, helping his mom toilet needs to know that to wipe a female, you wipe from the front to the back. So, put on your gloves and wipe from the vagina towards the rectum. This keeps fecal matter from getting into the vaginal opening and the urinary tract. Use wet wipes for cleaning and throw them in the trash can. Keep the private areas clean to lessen the chance of a UTI. If the person you are helping has a dementia, remember that they can sense emotions so keep calm and carry on. Do not make a big deal out of anything. Do not mention clothes or the mess. Sing a song and carry on. They are going to have an accident.

Nighttime Accidents:

Either they cannot make it to the toilet on time or they have no awareness that they need to “go,” The unawareness may be due to a dementia. It may also be that they have no warning from their brain signals that they have to “go.” They do not feel the urge. Sometimes, they feel the urge too late and can’t make it on time. Shit happens,  literally. Use the adult undergarments. Don’t call them diapers. Absorbent underwear with pads under the bottom sheet in the pelvic area may help protect the mattress. If urinary or bowel incontinence is an issue at night, go ahead and place two bottom sheets on the bed with pads in the appropriate place. Keep the mattress dry. That way, you can strip off the top layer, get them cleaned up, and back into bed without too much fuss. You may also try using an absorbent menstrual pad under the absorbent underwear to catch excess urine. If they have a poop incident at night, you may have to strip them, get them in the shower, and wash them. Place some Vicks Vapo Rub under your nose to block some of the smell.  Lotion them and redress them. If they are calm, then back to bed, and if not, go to the kitchen for a little snack or treat. Rinse the poopy clothes in the toilet to get as much fecal material off as you can. The same goes for the sheets and blankets. Launder in the washing machine. Sing a song and soldier on. The calmer you are the calmer they will be. If they do not have a dementia, the calmer you are the less stressed they will be. It is okay, it was an accident.

Do’s and Don’ts

Learn their habits. When do they normally poop? After breakfast? After the second cup of coffee? After dinner? When do they usually pee? Another useful tidbit … wear easy-on and easy-off clothes. Help them to maintain their privacy and dignity as much as possible. Dignity is based on people’s feelings, emotions, and perceptions & other peoples’ reactions to them. Watch your tone of voice. Do not use words of any kind that associate with a “baby-state.”
    • Close the door when they are in the bathroom. Give them privacy (if it is safe).
    • Cover the top of their lap with a towel.
    • Give them extra time to sit. Bodies need to relax to pee and poop.
    • Knock before opening a door.
    • Turn your head away when they are pulling their pants up or down.
    • Do not discuss their business with others.
    • Do not restrict their fluid intake because of incontinence. You may slow it down after dinner, but never stop them from drinking. You need to encourage drinking throughout the day.

Let’s move on to showering.

Showering or bathing 3 times a week may be sufficient. You can use wet wipes for underarms, privates, feet, and rolls (where skin touches skin) on the other days. Lotion is good for their body and so is a face moisturizer. Clean clothes and underwear every day. Teeth brushed twice every day and flossed once a day.

Shower day:

    • Gather all supplies you will need (shower chair or bench, body soap/wash, pouf with a handle, 3 washcloths, shampoo, conditioner, shaving cream/gel, razor, 3 towels,  robe, body lotion, etc.) Some use a barber’s cape to cover them.
    • Heat the bathroom with a heater.
    • Deep breathe and get yourself in the right frame of mind to help them.
    • Follow them in and help them toilet and undress. While they are on the toilet, start the shower and check the temperature before putting them in. A hand-held shower head is very useful. Warmer than lukewarm water, but not hot.
    • Have them use the grab bars and guide them to the shower seat. ** Note: if you know that you will be the one washing the private parts and bottom …Latex gloves on, have 2 washcloths ready, and use one for their front and one for their backside. Rinse well and then have them sit. **
    • You may drape a towel over their lap and shoulders to maintain dignity.
    • Allow them to wash on their own. You only help if they can’t get everything washed.
    • Wash the hair and condition it, first (always rinse well).
    • Wash the body from face down. Start with the face, neck, and ears. Then proceed to the shoulders, back, right arm, and left arm. Front of body, under breasts, right leg, right foot, and toes, left leg, foot and toes, Be gentle when lifting limbs. You may have to ask them to lean forward or to the side. Have them clean their bottom and private parts, if at all possible. This is easier while they are standing. Decide what works best for them, private parts first or last.
    • Drape a terry cloth robe around them (it helps in the drying process).
    • Try to pat dry and not rub vigorously (again, you want them to do everything they can do).
    • Look at the skin for any red or cracked places. If there are some, contact their primary care doctor. You may need to use a skin protectant like Calmoseptine.
    • Lotion everywhere, except between the toes. Make sure between the toes are completely dry. Make sure the genitals, perineal area, and bottom areas are dry as well.
    • Ask them about their normal routine for shaving. Some men shave in the shower and some shave after their shower at the sink. Ask the ladies if they want to shave, as some may no longer shave or even need to shave their legs. Ask them about shaving their underarms too.
    • Ask them if they prefer the morning, evening, or afternoon for a bath/shower.

When you need to help them wash body parts:

    • If you need to help them wash, use latex gloves (this barrier may make them and you feel more comfortable).
    • Use a clean washcloth for the genitals area and another clean washcloth for the anal area
    • For females, clean from front to back. Washing the inner thighs, labia groin and perineum.
    • dry the skin folds and skin underneath the breast.
    • Apply face moisturizer
    • Apply lotion.
    • Apply deodorant.
    • Brush teeth.
    • Get them dressed in clean clothes and comfortable for a little rest afterward. They will be tired. Give them their favorite drink or snack.
    • For males, clean the tip and shaft of the penis and the scrotum & perineal area. For uncircumcised men, pull back the foreskin, wash, rinse and place the skin back into position.
    • Wash the anal area (where the poop comes out). Use a clean area of the washcloth with every pass.
    • Be quick, gentle, and efficient. Rinse well.
Always have clean sheets once a week after a bath. The little things do matter. Yes, you will have a load of laundry to do after bath time. Accept it. Pat

Pondering: When you think about “thinking about” making a decision

Posted on August 4, 2022 by - #alzheimers, #caregiver, #caregivers, Decision criteria

It happens one of two ways. One, you see or hear something that triggers the thought. Two, an incident happens and you know that you will have to deal with it sooner or later. You will hear yourself say, “I need to check on “this thing.” Sometimes, it will be, I am going to have to make a decision on “this thing,” and I need to start thinking about it. August 3, 2022

We ponder a lot, but are we stalling?

We think about thinking about stuff all the time. It isn’t high up on our priority, but we know that we will have to deal with “it” soon. Soon, as in, it’s coming. Oh well, we don’t have a timeline/deadline yet, so I guess I can think about thinking about it later. The “it” may be an oil change. The “it” may be a medical issue. The “it” may be a work project. We do this pre-contemplation for a lot of things in our lives. How do we prioritize? What can we do to make the prioritization process easier? Surprisingly, we need inspiration. A moment of clarity about new possibilities and options. Do you want to reach your goals? Your inspiration helps in your journey to reach your desired goals.

Which of these words for inspiration helps you to see your capabilities?

Creativity                    Inventiveness                          Ingenuity                                 Imagination Originality                   Individuality                           Artistry                                    Revelation Brainwave                   Brainstorm                              The “Aha” moment                 Genius Insight                         Vision                                      Incentive                                 Motivation

Find Your Top 3 Goals or Decisions to be Made

Now, that you have identified some of your capabilities you would be best served to find your top three goals. Hang with me here. You need your top goals to figure out what is important to you and to help guide the direction that you will be going. Laser focus is much better than the shotgun approach. Why? To maximize your energy levels. Remember, you only have so much focused energy per day. The other way that it helps is so you can decide what really does need to be done, what can wait, and what can be discarded (things you don’t need to do or you don’t need to do yourself). What if you could focus on the things that you can control? You cannot control your feelings or thoughts. But, you can be curious about them and accept them as they are with no judgment of good or bad. You can control how you react and act. Be present, right now. The present situation is what you can work on. You cannot change anything about the past. There will be challenges and obstacles and sometimes, you will need some help.

You can control time and effort, but not the outcome

You can control how much time and effort you put into a problem, relationship, or work issue, but you cannot control the outcome. We all hate that part. Have your “can do attitude” ready for the things you can control. Back to prioritizing. You know that we chase a few rabbits. Urgency and importance are the key factors in prioritizing. The Eisenhower box is a great tool to use. Are you able to recognize what needs to be accomplished? Do you comprehend the task? Do you know why you should do it? Feelings and emotions will probably arise about prior experiences or things we have lived before. Prior choices, prior consequences, prior successes, etc. What systems do you have in place for yourself to help you succeed? Routines, habits, scheduling, flexibility, rearranging ever-changing priorities, allowing for adequate amounts of time, etc. Patience and persistence will pay off while learning this new skill of prioritizing and planning. You will mess up and you will feel frustrated, but you will progress. Practice kindness to yourself, not beating yourself up. Just get back on track and try again. We are not looking for perfection we are looking for progress. Celebrate your efforts. That is what builds resilience.

What are some barriers to prioritizing?

    • Not making time to prioritize.
    • Not seeing the “big picture.”
    • Getting distracted by time wasters or the little things.
    • Not delegating what can be delegated.
    • Refusing to adapt when you get new or better information.
Learning your core values also helps in prioritizing and making decisions. Pat

Caregivers: Do You Know Your Limitations?

Posted on July 13, 2022 by - #alzheimers, #caregiver, #caregivers, #dementia, Caregiver Information

“A man’s got to know his limitations,” Dirty Harry in Magnum Force

I really like that quote. We all need to know our limitations or the scope of our knowledge base. I get it, most of us push past our limitations before we realize what we are doing. Can we get better at finding our limitations before we blow past them? Let’s explore a little and see… Do you know your limitations or do you just keep on pushing? You know when you keep pushing your limits, the stress piles up or you leave collateral damage in your wake. July 13, 2022 As a caregiver or helper, you are tasked with many different challenges every day and some will push you past your limits. Most of us know our limitations. However, we do not always heed the warning signs that we are getting close to them. A few folks do not know their limits and get into trouble before they realize, “Oops, I messed up.” Other words for limitations include – Constraint, Control, Obstruction, Impediment, or Qualification

Realizing and Recognizing Your Limits Can Actually Benefit You

What if realizing and accepting your limits could benefit you? What if knowing your limits and your boundaries allow you to take care of yourself in body, mind, and spirit? Learning what to give and share as well as knowing what you need from your relationships Boundaries are important too. Knowing your limits can help you to assess the areas that you can improve on. Knowing your limits also allows you to use your strengths. Another way to look at knowing your limits is to prevent burnout and decrease your stress.

Definitaion of Stress

When I think about stress, I always remember the line – “Stress: the confusion created when one’s mind overrides the body’s desire to choke the living shit out of some asshole who desperately needs it.” It always makes me smile. I get it. We can learn new skills when we hit our limitations. Usually, that is true. It is not always true though. There are times when we have hit our limitations and we need to stop. Accepting our limitations is not the same thing as accepting failure. That is probably the crux of everything anyway, the fear of failure.

You may have all the information, but do you know how to apply that information?

No matter how well we manage our time, we only have 24 hours in a day to get things done. We are limited by what we can and cannot control. We do not have endless abilities or endless knowledge about everything. We are good at what we do. We are experts at our jobs. But, that does not translate into expertise at everything. For example, I am good at what I do with research, finding solutions, and preparing plans of action with guidance and support. Now, I have a plumbing problem at home. I am smart and I can figure a lot of things out. I can research info online and handle it. WRONG! I can have all of the information in the world, but if I don’t know how to apply that information, I am stuck, frustrated, and angry. Guess who might bear the brunt of my frustration and anger? Yep, family and friends. Knowing and being able to do it or handle it are two different things. Find the expert you need. Save yourself a lot of stress, frustration, and anger. Stop beating your head against the wall.

Which of these responses do you recognize in your own life when dealing with frustration?

    • Anger – an angry person often reacts without thinking
    • Giving up – you quit everything and you no longer care about the goal (this is not the same thing as deciding to give up on an unreachable goal)
    • Loss of confidence – you might take a hit to your self-esteem too by giving up
    • Stress – too much stress breaks our bodies down (irritability, anger, anxiety, fatigue, headaches, depression, low back pain, stomach pains, migraines, ulcers, etc.)
    • Depression – continued stress or anxiety that causes brain chemical changes
    • Abuse and misuse – drugs, alcohol, food, shopping
    • Anxiety, Fear, Sadness, Guilt, or Shame are other responses to frustration.
I know that we have chased a few rabbits today. A lot of things are interconnected. I want you to know your limitations. I want you to prevent excess stress and burnout. Continued stress leads to burnout. You will begin to feel empty and numb. You don’t just numb the negative feelings; you numb the good ones too. Your “get up and go” has “got up and went.” You no longer have the motivation you once had. You are tired. Sometimes, you feel hopeless or stuck. If you have thought or said, “I know that it will never get better,” you could very well be at the burnout stage.

Signs of Caregiver Burnout

    • Feeling anxious
    • Feeling irritable
    • Feeling stressed
    • Feeling resentment
    • You are neglecting your own health
    • You are missing out on important events
    • You are not eating properly
    • You are not exercising
    • Your finances are taking a hit
    • You feel lonely
    • Increased alcohol consumption
    • Overreacting
    • Impatience
Setting limits will actually help you to achieve your goals. Limit your goals to 4 or 5 per year. You cannot do everything. Pick ones that mean the most to you and focus on them. Limit your tasks to 3 per day. Only do the important and necessary things. Place a time limit on your tasks. Focus on the task at hand. Stop adding stuff to your schedule and start crossing off the things that are not a priority. Pat

Caregivers: Do you have the skills, knowledge and expertise to be a good family caregiver?

Posted on July 6, 2022 by - #alzheimers, #caregiver, #dementia, Caregiver Information

You think you can. You said you will. But, do you have the knowledge and expertise to do it safely? Most of the time we don’t think about all the consequences before we jump in and do what we do. Maybe it isn’t really consequences, but more the techniques and training you will need for certain tasks.  Unfortunately, some caregiving tasks are not on-the-job training. They can be dangerous to your loved one and to you if not done properly. July 6, 2022

Know your strengths and weaknesses

Find your strengths and your “not-so-good-ats” (weaknesses). Find your helpers. Have them figure out their strengths and “not-so-good-ats” too. You will have to honestly assess your abilities, your capabilities, and your training needs. You know that there are some things that you can do, things that you can take care of and things that others will need to handle. Knowing is always better. It helps you to make a plan, make a schedule and prepare for the future. Sure, you can fly by the seat of your pants and find yourself in a constant state of managing by crises. Talk about exhausting, frustrating and maddening, this will do it. Planning for what you can plan for makes everyone feel more safe, secure and settled. When the unexpected arises, you can handle it easier and with less stress.

Some tasks that caregivers do, provide and handle.

    • Buy groceries, cook, clean house, do laundry, provide transportation
    • Help the care receiver get dressed, take a shower, take medicine
    • Transfer someone out of bed/chair, help with physical therapy, perform medical interventions—injections, feeding tubes, wound treatment, breathing treatments
    • Arrange medical appointments, drive to the doctor, sit in during appointments, monitor medications
    • Talk with doctors, nurses, care managers, and others to understand what needs to be done
    • Spend time handling crises and arranging for assistance—especially for someone who cannot be left alone
    • Handle finances and other legal matters
    • Be a companion
    • Be a (usually) unpaid aide, on call 24/7
    • Be some emotional support
    • Be backup care and extra care when needed
    • Take care of lawn maintenance, outside house maintenance
    • Help with wheelchair usage
    • Help with oxygen usage
    • Help with CPAP machine usage
    • Help them walk with a belt to decrease fall risks
    • Help turn them and move them in bed
    • Help with hearing aid insertion and removal
    • Help with false teeth
    • Bathe them (maintaining modesty and dignity)
    • Change sheets with them in the bed
    • Pay bills
    • Housekeeping
    • Laundry
    • Help/Monitoring physical therapy exercises at home
    • Checking blood sugar (how and when)
    • Checking blood pressure
    • Checking weight
    • Handle a crisis or an emergency
    • And much more
As you can see, some of these things you can do and handle. Others may take some training. I know that there are online training courses and probably some in-person training places in some areas. You will need to search in your area for what is available.

Online Trainings Available

Tennessee Department of Health NFSP Meet Caregivers Caregiver Training Caregiver Training online course A Place for Mom trainings and videos APFM videos and courses These will get you started.

What about your own physical strength?

Do you have the physical strength to transfer the care receiver? Do you have the physical strength to help someone get into and out of the shower or bath that is mostly dead weight? Toileting and bathing are intimate experiences and are very tough to handle. Not everyone can or will learn do it. It can be very unnerving and very uncomfortable. Your loved one will feel the same way. Be patient and respectful. It is going to take more time than you think for bathing.

Do you know how to help with personal hygiene appropriately and safely?

Personal hygiene is probably the hardest to do. No one likes it, but it is necessary. You will have to make the decision to do it, all of the love you feel for them will not make it any easier.  You will have to use discipline to get it done. Get yourself trained. The training will help you to feel more comfortable with doing it safely. The training will help you increase your confidence. The training will help your loved one feel more safe and secure. You are more apt to be able to help with personal hygiene if you have been properly trained. As many family members as possible need this type of training. It is a learnable skill. Focus on the positive aspects of them being clean. Think about how you feel after a bath or shower. You do feel better. You do rest better. Teeth brushed, hair combed, lotion on body with clean clothes makes everyone feel better. Full bathing two or three times a week is good enough. Do spot cleaning on the other days. You want to keep the skin from breaking down. You want to prevent infections from happening. A daily bath for dementia patients is better because they like routine. Lotion up after the bath. You can find your routine and rhythm. What if you have a bad back and you need to help your loved one out of a chair or from the floor. How can you do that without hurting them or yourself? Learn the techniques. How much dead weight can you lift safely? Get yourself trained. When you can no longer do personal hygiene or lift and transfer safely, it is time to bring in home care help or begin the transitioning to assisted living/nursing home. Pat

One of the Caregiving Tolls: Negative Emotions Caregivers Feel

Posted on June 30, 2022 by - #alzheimers, #caregiver, Emotions

You may try stuffing negative emotions down, or you may just ignore them … it will work, for a while. Then watch out! They will come out and it rarely will be in a productive way. Recognize them. Acknowledge them. The emotions you are feeling are valid. June 29, 2022 Of course, you love them and want to help them. You think that because you love them and you want to help them, everything will be okay. It won’t. Dueling emotions and feelings will arise. It usually becomes overwhelming in a few short months.

Accepting what you feel

Be healthier. Be more on top of things. Be accepting of what and how you feel. It is okay to feel resentful sometimes. It is okay to feel lonesome. It is okay to feel angry at your loved one’s frustrating behavior. You will have some thoughts and feelings that you will feel guilty over. Sadness will creep in. You will probably start grieving for them a little while after the diagnosis. It takes a lot of energy and effort to hold in your feelings. Stifling your feelings and emotions can cause high stress, sudden angry outbursts, unhealthy life choices, problems sleeping, increased risk of depression and hopelessness.

Give yourself permission to vent

Will you give yourself permission to say what and how you are feeling? You need a trusted person that will listen to you and not judge. You do need to vent. You may also need to tell the person that you are talking with that you just need to vent. You are not looking for solutions or suggestions. This is where support groups can help, too.

Don’t feel guilty about your feelings.

That is always easier said than done. Do you have unrealistic expectations? Do you beat yourself up over negative emotions? It is okay to get mad. For example, your loved one has made a huge mess with the meal. It is at the end of the day and you are tired because it  has been a very tough day. Now, you have to clean up the mess. You have to get your loved one cleaned up and changed.

The problem isn’t that you have negative feelings

The problem is not that you have unpleasant feelings, the problems arise when you haven’t taken care of them and you hurt yourself physically or emotionally or you hurt your care receiver physically or emotionally. You don’t bottle them up and you don’t let loose in front of your loved one. What will be your safe outlet? Take care of the mess and your loved one, then find your ways to decompress.

Suggestions:

    • Call or text with a supportive friend, family member or another caregiver
    • Go to a support group meeting
    • Cry
    • Go for a run or walk
    • Journal – let it free flow and write whatever comes up
    • Find a punching bag (a real one or a pillow) to punch, throw or scream into
    • Cleaning
    • Take a break, call in reinforcements
    • Take a hot shower or soak in a bath
    • Watch a TV show or a movie
    • Whatever is healthy and works for you
Caregiver guilt – the self-imposed “oughts’,” “shoulds,””shouldn’ts,”  and “musts.” Doing or saying what you believe is the wrong thing.

When the guilt and negative emotions rear their ugly heads

When the guilt comes, how about asking yourself what is triggering this? Perhaps an unrealistic belief about your abilities, the unrealistic “oughts,” or faults that are imagined or even unavoidable? You will feel guilty sometimes, don’t try to get rid of it, just accept it. Get comfortable with being uncomfortable. It is hard to accept reality sometimes. Resentment – few people admit to being or feeling resentment, but it happens quite a lot. It is part of the duality. You love them and want the best for them, but you do feel resentment. Your life got hijacked by this new responsibility. You may be feeling resentment because of feeling slighted by others. Maybe your brothers and sisters do not help? Resentment really shows up when your own life is way out of balance. Yet, another reason to take care of yourself. Anger – being mad for reasons that are both direct (unfair criticism, a loved one that is not cooperating, too many problems that day) and indirect (you are tired from working full-time, helping your loved one, and the lack of sleep, frustration over the lack of control, disappointment,) Chronic anger and hostility has been linked to high blood pressure, heart attacks, heart disease, stomach problems, headaches and low back pain.

Learn to express your anger in healthy ways when you are a family caregiver

Learn to express your anger in healthy ways. When you blow up or explode, what do you leave in your wake? Who do you hurt? Learn to self-soothe, take a time out, find a constructive way to express your anger. It will take work and practice, but it can be done and you will feel much better and so will your anger targets. Count to five. Take 10 deep breaths. Let your more rational mind catch up to your reactive reptilian mind. Worry – Worry seems to be good intentions run amok. Our brains need something to focus on or to be engaged with. How many of you are good at ruminating? I know that I can be very good at ruminating. It does nothing but keep me stuck. It is a time waster. It is an energy deplete. It does not change anything. You can “what-if” yourself to death. Set a timer for 5 minutes and allow worry. When the timer goes off, you then look at the possible solutions to what you have been worrying about. What will be productive? What can make a difference? Who do I need to call? Loneliness – Caregivers are lonely. Friends step back. Co-workers step back. Some family members step back. You need your peeps. You need them to be present in your life. Go out for lunch or dinner every week or two. Have an afternoon tea and dessert. Take a couple of hours to catch up, laugh, watch a movie, exercise. If you find that your loved ones or friends have stepped back, it may be because they do not want to add to your burdens or they don’t know what to do or how to help you. Be direct and upfront with them. Tell them that you want them to ask you to do things. Tell them that you do want to go out. Tell them to text you or call you and if you can’t talk then that you will contact them later. Grief – When someone deals with a long-term illness, the grieving process can start soon after diagnosis. Definitely, when the loved one begins to decline. Anticipatory grief is what it is called. I didn’t know it at the time, but that is what happened with  me. You are grieving that your loved one is losing their abilities to be the independent person they once were. You are grieving the loss of their abilities that will come. Defensiveness – It is okay to bristle at some things that people say. Try not to have a knee-jerk reaction to everything that has been said. If you are having a strong reaction to what the other person is saying. Sit with it a minute and figure out why you are feeling defensive. Realize that being overly defensive makes you closed-minded. The kind of person that can’t see the forest for the trees. Most of the time, people are trying to help. Not everyone, but, most are trying to help. The only thing that I will ask you to do is to listen to the suggestion(s) and give them some thought. You get to decide what is best for you and your loved one. Find support. Find humor where you can. We need to laugh. Even using inappropriate humor is a coping mechanism. Don’t feel guilty about laughing or finding humor in the stressful times. The absurdity of things will make you shake your head. You are not laughing at your loved one. We all know how serious these chronic health conditions are, but we also know there is stupid shit that happens too, and it is funny. Emotional Acceptance – It has happened, you have an emotional pain.

Try this exercise when you feel safe.

    1. Identify the emotion
    1. Close your eyes and put the emotion 5 feet in front of you (you want to look at it)
    1. Give your emotion a size, shape and color – watch it and recognize it for what it is
    1. Let that emotion return back inside of you
    1. Reflect on what you noticed. Did you notice any change in the emotion when you got some distance from it?
Will you be willing to accept and experience the negative emotion? By accepting the emotion, you are accepting the truth of your situation. You don’t have to expend your energy in trying to deny what is happening. You can focus on solutions. When you accept the emotion, you can be curious about it. Why is it arising? What is it trying to tell you? What tools in your emotional toolbox will help you navigate this emotion and diffuse it? Negative emotions are not fun, and accepting them will not kill you. If you want to lose the destructive power of negative emotions, accept and acknowledge them.

Acceptance is acknowledging the moment as it is, right now. No judgement.

Pat

Maybe, you aren’t cut out to be a caregiver.

Posted on June 22, 2022 by - #alzheimers, #caregiver, #caregivers, #dementia

Or at least, you are not cut out to be a hands-on caregiver. Maybe, you are more of the management type who makes sure that things are handled and done. Maybe, you are the visiting regularly and running errands type. Maybe, you are the do everything but the personal hygiene type. Then again, maybe you are not the caregiving type at all. Not everyone is cut out to be a primary caregiver. June 22, 2022

4 Common signs that you are not cut out for caregiving.

    1. You are not patient.
    1. You do not have the time.
    1. You are finding excuses not to do it.
    1. You cannot do the kind of care required.
There may be times that you have to jump in and do the caregiving due to a sudden illness, surgery, or injury. You suck it up and handle it, for a short period of time. Short period of time is the key. Now that the immediate “danger” is over, it is time to reassess the situation and the needs.

You cannot always sustain a high level of care as a caregiver

What you can do in an emergency, usually cannot be sustained over a long period of time, to me, a long period of time is anything over a month. You get worn down, everything else in your life has been put on hold. You can’t put everything on hold for very long. Relationships, jobs, careers, kids, friends, other commitments require your attention. Our lives are in flux and we do pay more attention to our jobs at times and other times we pay more attention to family and friends. Forget balance, there is no such thing. Just be fair and disciplined with your energy and time. No one likes leftovers all the time. Every family has its own dynamics and history. Sometimes it is functional and good. Sometimes it is very dysfunctional and bad. There may be estrangement. There may have been verbal abuse, physical abuse or sexual abuse. You get to decide what you will and will not do. You may hear stupid crap from outsiders who have no clue about your experiences, if you distance yourself from your family. You do not answer to them. You do not have to acknowledge what they have said or explain any thing to them. Yeah, I know, we chased a couple of rabbits. We always get back on track, eventually.

It may depend on your loved ones specific needs

Depending on the needs of your loved one, you may or may not be able to be a good caregiver. What happens if they need to be lifted, transferred or dressed and you have no training in how to do that appropriately? If you don’t do it safely, you can hurt yourself , them or both of you. What if they need toileting help or other personal care help? Talk about caregiver stress… Even if you have a good relationship, caregiving may not be right for you. Maybe conflicts have started to rear their ugly head. It would be better for everyone if there was some separation and other solutions found. Sometimes the caregiver’s own physical or emotional health prevents them from being someone else’s caregiver. Experiencing caregiver stress is a given, but we sure don’t want you to get to caregiver burnout.

Maybe, their needs have increased

The care receiver’s needs have increased and now you find that you cannot provide the care needed. Learn to say, “No.” Have the conversation and look for alternative solutions. You will feel guilt, give your heart time to catch up with your head (what you know). Just as the word “caregiving” means different things to different people. The word, “no” means different things too. It may mean that I can not do all that I have been doing, but, I can do _____________________. Maybe, “no” means that you are tired physically and mentally. Maybe, “no” means that we need to re-evaluate the situation and change some things.

Time to set bourndaris as a family caregiver

Caregivers will benefit from learning to set boundaries and also to express their feelings. Ideally, you will learn these things before you are an asshole to everyone else. Use “I” statements. “I” feel, “I” can, “I” cannot, “I” can no longer, etc. Thou shalt not use “You ought to,” “You should,” “You need to,” types of statements. You will be starting a fight. Get rid of the “shoulda, woulda, coulda’s. They are not helpful. They keep you stuck when you need to move forward.

Yes, caregivers often have guilt

Let’s talk more about guilt. We will all experience it. Not all guilt is bad, so pay attention to what it is trying to tell you. Is it calling to your attention that you wanted to do something, but then you didn’t? You can fix that by changing your own behavior. For example, if you were going to cook two meals and take them over, but didn’t…you can decide what to cook and when to take over with some follow through. Boom! It’s done. IF you are feeling guilty because you cannot change the unchangeable, then hold on a minute. You are not that powerful. You aren’t even responsible for other people’s feelings. Remember, thoughts are just thoughts until you put action to them. Granted, sometimes you need to let the thoughts go. Getting rid of the “shoulds” in your head will certainly help to stop the guilt cycle.

Are you feeling guilty because?

    • You aren’t spending enough time with your mom?
    • You aren’t spending enough time with your spouse and kids?
    • You aren’t taking care of yourself?
    • You aren’t focused at work due to your caregiving to-do lists?
    • You forgot  to do something that your dad needed you to do?
    • You let your mom  stay in her own home too long?
    • You moved your mom into assisted living?
    • You resent the time caregiving takes?
    • You think your life would be easier if they died?

Acknowledge that you feel guilty and then move on. Guilt won’t kill you but it will keep you stuck.

Most of the time, your feelings as a caregiver are completely normal.

    • It is normal to feel frustrated, in general.
    • It is normal to feel frustrated with the time it take your loved one to do anything.
    • It is normal to feel anger at times.
    • It is normal to want all of this to be over.
    • It is normal to hate yourself for feeling certain ways.
    • It is normal to silently scream in your head.
    • It is normal to enjoy aspects of your time together.
    • It is normal to wonder  if your marriage will make it through this.
    • It is normal to hate missing your kids’ games.
    • It is normal for you to be numb and not feel anything, just handle it.
    • It is normal to feel guilty when you take some “me” time.
    • It is normal for you to want to throat punch the next person that tells you that you should take care of yourself.
    • It is normal for you to want to run away.
    • It is normal for you to miss your job.
    • And, a bunch of other things.

Setting boundaris will keep caregivers and care receivers safe

Do you have boundaries? Boundaries keep us safe. They are our non-negotiables. Our individual or family values that we use to guide our choices. Find yours. A boundary is something that you must have or something that you cannot tolerate. It is going to get touchy here – sometimes we get our non-negotiables confused with important needs.

Examples of non-negotiables:

    • Your physical, mental and emotional well-being – What will you do to protect them?
        • What won’t you do to protect them?
    • That you speak to yourself in a kind manner.
    • A healthy relationship with yourself – Eating nutritious food, walking, running, working out, reading for pleasure
    • Keeping your word to yourself and others
    • Your core  values – honesty, love, joy, happiness, reliability, respect, openness, trust, accountability, etc.
    • I will be kind to myself, when I make mistakes
    • Having fun
    • Resting/Sleeping

Find your most important values

So, what are your governing values  as a person and a caregiver? The principles that you live your life by? The things you will and will not tolerate? Find 3 or 4 that are valuable to you and how you want to live your life. They will make it easier for you to answer questions. They will make it easier to say “yes or no.” Another name for non-negotiables for me is deal-breakers.

No one is perfect. We will all mess up, from time to time.

Pat

What does your temperament and your traits have to do with caregiving/helping loved ones?

Posted on June 15, 2022 by - #alzheimers, #caregiver, #caregivers, #dementia, traits

Think about it, some folks can take on caregiving chores and still be happy and others are absolutely miserable. They both have frustrations. They are both exhausted. Both of them are doing the best that they can. June 15, 2022

Are you a caregiver?

Some of you don’t know that you are a caregiver. You think you are helping them out. It could be your mom or dad. It may be your husband, wife or significant other. We are resistant to be caregivers much less be called a caregiver. We really do not want that responsibility, do we? Maybe that is just me, but I suspect that others out there feel the same way as I do. When my mom needed help, I did not consider myself a caregiver. She just needed help and we helped her. Daddy was the primary caregiver, I tried to support both of them, in ways that I could. With daddy, it was about listening to what he was going through. The frustration, the anger and the not knowing what to do. With mama, it was about listening to her anger, frustration and the irrational thoughts. Mama did not need personal hygiene care, she could take care of that herself, with modifications to the house.

It gets hard to be a caregiver, my own experience

To hear my daddy, say that he did not know how much more he could take, was hard. To hear my mama, say that she was going to divorce my daddy, was hard. To be summoned down to the house (an hour away), many times, was hard. I was working 12 hour shifts at the pharmacy and had three boys at home. Our stress was mental and emotional, not so much physical. It took about four months to get things back to “normal.” I was dealing with a dad that did not believe in mental health treatment such as talk therapy and that medications might help. I had a mom that had changed both physically and mentally due to MS and mini-strokes. WTF. Now, dammit, this was my area of expertise and my own daddy is not listening to me. I finally convinced them to go to the neurologist and let the neurologist see what could be done. I worked behind the scenes with a message to the neurologist. My mom got the meds she needed and a couple of talk therapy visits. Things went much smoother after that. It was good to hear from my dad that my mom was back to her usual fun self. It was good to hear my mom laugh again and be the jokester that she was. She cheated at the Rook card game; you know. We always had to make her stand up and turn out her pockets for that damn rook card.

I wasn’t the primary caregiver, but I was still stressed out

During all of this, I was tired and frustrated. I wasn’t angry. I wasn’t miserable. I didn’t hate every minute of help that I provided my parents. I didn’t hate that I was missing things with my boys. Disappointed, sure, but I was needed elsewhere sometimes. If your family needs help, you help them. Other folks are angry. Sometimes, they are resentful and miserable for “having” to help. Maybe, the difference is in how you look at it or feel about your loved one? Feeling like you must help instead of wanting to help may be the key, I don’t know. Did you accept your role as a helper or caregiver out of love or obligation? Most of us have had no training and very few skills in this arena. It is on-the-job training or more likely, flying by the seat of your pants. If you are providing personal hygiene care or you are having to physically move or transfer your loved one, you do need training in how to do it appropriately and safely.

Personality Traits of a Happy Caregiver

    • Patience – especially with questions, angry outbursts, length of time to do things
    • Compassion – understanding what the other person is dealing with
    • Empathy – understanding the feelings that others may be feeling or thinking
    • Humor – finding something to laugh about in these difficult situations. We know how serious things are, but we need to laugh. Not at the person, but at the situation or other things.
    • Present – be in the here and now, focusing on what they can do
    • Detail Oriented – good management skills
    • Able to Accept Help – a good caregiver lines up a team to help out
    • Able to Set Boundaries – know your own limits and say “no” when needed
    • Flexible – able to cooperate with others
    • Assertive Advocate – getting the answers needed, making sure their loved one has what they need; being firm but not being an asshole (at first)
    • Creative – some days things will work and other days you have to find something else that works
    • Good Communicator – learn to communicate with your loved one in the way that they can communicate, especially if they are non-verbal now

Which ones of the above do you need to work on?

How many of these skills do you have? Be honest. There will probably be a few that are not in your wheelhouse. That is okay, are you willing to learn? Are there some skills that you know you don’t have and are not good at? That is okay too. It is great to know what you are good at and great to know what you suck at. Use your strengths to your loved one’s advantage. Others will have different strengths to help. We can all improve. Know this: You are perfect as you are… but you can always be better. We all have the struggle or tension between self-acceptance and self-improvement. We have talked about this before. It is progress over perfection. Are you smart enough to know when you don’t know? Do you know how to find good and trusted information? Do you know when you are out of your area of expertise and need to hire that expertise? Self-confidence in your caregiving abilities comes with time and patience with yourself. It comes with learning new ideas and ways to help. You may have to silence your inner critic. Your negative thoughts are not always right. They are only thoughts, so challenge them. Confidence in your abilities is good. Over-confidence is bad. The goal is appropriate confidence. Focus on the effort. Keep learning new things. Listen to what others have to say. A reluctant or sad caregiver has feelings of unfairness or irritation. You may even feel resentment. Resentment at the care receiver or resentment at the others who don’t or won’t help. Not everyone is cut out to be a caregiver. Pat

Can you work with your siblings to provide care for your mom?

Posted on June 9, 2022 by - #alzheimers, #caregiver, #caregivers

I have seen both ends of the spectrum. I have seen the complete breakdown and fights between siblings trying to help their mom. I have also  seen the absolute success of siblings working together to take care of their dad.

Why can one family make it work and another family implode?

June 8, 2022

You know people that can put the “fun” in dysfunction. It can be amusing when the stakes are low. What happens when the stakes are high and everyone needs to do their part? It’s not so funny then. It is downright hard and very stressful.

Family dynamics, sibling relationships, parent-child relationships, rivalries, blended families, issues from the past, issues from the present, etc. Relationships can be complicated. Relationships can be messy. There may not be a relationship anymore.

First, you need to decide if you want to help your mom or dad. No judgement here, I have heard the stories of how you were treated as a child by your mom. I have heard the stories of what you endured as a child and how you worked hard to get out of that situation. No one is required to help or provide assistance to their mom or dad. It was usually one or two of the kids that had to endure the hell. The other children were spared. This is also where you and your siblings will disagree about what happened in the past. We can only speak about our own experiences and perceptions.

The first time that I heard of people being mistreated or abused when they were kids, it was hard for me to imagine. I had no reference point for that. My brother and I knew that we were loved and wanted. We got spanked, but we were never abused. You don’t know what someone else has been through. It is always hidden and it is never talked about. Why was it so hard for me to imagine? Because, I could not imagine my mama or daddy doing to me what other parents did to their kids. After hearing about others being slapped, locked in their room or being starved, you start to realize that not everyone grew up like you did.

For some of these kids, they did not admit it to themselves until they were in their 30’s or 40’s and it is not easy for them to talk about. I get why some folks cannot or will not help to take care of their parents either from a distance or hands-on care. Your own safety and mental health needs are absolutely of paramount importance.

The other things that we need to look at are the siblings that do not want to help because they don’t want to help. They have no real reason other than it will affect their own lives. Tough toenails, sometimes you have to do things that you don’t really want to do. It is called being an adult. Don’t misunderstand me, I am not saying that you have to do the hands-on care, but you do need to be involved in seeing to their care. See, right there, I used my own feelings and my own background with my own family to make a generalized statement about caring for a loved one. I apologize to you for that. I don’t know your experiences and I respect your decisions.

 For this article, I am assuming that you have siblings and you do want to help your mom or dad. You do love them and you do care, you may not know where to start or what to do first. Safety is of paramount importance. Are they safe? Are they in a safe environment? Do they have nutritious food and are they eating? What about drinking their water every day? Taking their meds appropriately? Showering/Bathing and keeping up with their personal hygiene? Are they putting on clean clothes or are they wearing the same thing every day? What are their limitations? Are they physical limitations, mental limitations or a combination of both?

It seems as though there is always a primary caregiver and then supporting caregivers. All of you may be hands-on helpers or a combination of hands-on and have in-home help. Being a caregiver or helper is hard. It is demanding, frustrating and tiring. Not everyone is good at being a hands-on caregiver. But, they can be great at other things.

Communi-friggin-cation is the key. You have to talk to each other. You have to work out a schedule. You have to figure out what your strengths are and what you are willing to do and what you are not comfortable doing. Maybe, you are good at doing most everything but personal hygiene tasks. Maybe personal hygiene tasks are okay with you, but you hate cooking and doing the laundry. Maybe your mom or dad needs help getting up out of bed or a chair. Do you know how to help them safely? You probably need training in how to lift and transfer them safely.

What happens when one sibling see things differently than another sibling with regards to where the parent is exactly “at” in their disease progression? De-Nile (denial) ain’t just a river in Egypt. When you cannot agree, it is time for a frank discussion with a social worker, their physician or me. Why would I say to meet with someone rather than tell you to roughshod over your sibling? Remember, your parent may tell one sibling one thing and something different to another. It is usually not malicious. They are trying to keep up appearances that they are okay.

A neutral third party can be objective, so that you and your siblings have a better understanding of where your loved one is, right now and also, what is to come. It is hard. We call it the practice of medicine, because there are no absolutes. We make the best decisions that we can with the information that we have right now. As the status or information changes we will make adjustments.

Some of you are thinking, but my sister is a looney tune. Others are thinking, my brother is the baby of the family and is no help at all. Other complaints include –  My sister is a know-it-all and a martyr. My brother lives out of state and thinks everything is fine. All my sister/brother wants is for them to die and get their money. My sister and I don’t get along. You may even hear, “I can’t bear to see mom/dad like that.” There is some kind of hurt or conflict in the sibling relationships.

If you love your mom or dad and want the best for them, then do what is best for them. Keep that your main goal and focus. You have compartmentalized before; you can do it again. You will get distracted and you will harp on your sibling(s). When you start griping and yelling about what “they are doing or not doing,” maybe it is time to refocus on the goal.

Have the roundtable discussion. Keep the main thing the main thing. Decide who will do what and by when. Calendar it. Place the calendar on Google Docs so everyone knows what is happening. Include your triggers for when it is time to bring in paid help. Of course, you need to figure out how and who is going to pay for it. Ideally, it will be from your loved one’s money or a long-term care insurance policy, but that is not always an option. Can the siblings pitch in money to help? Some can and some cannot. Be upfront about what you can and cannot contribute financially and time wise. You can make a plan when you know who and what you have to work with. You are looking for progress, not perfection.

Clues That You Are Acting out of Emotional Needs or Fighting Old Battles

  • Your level of emotion is out of proportion to the specific thing being discussed right now. For example: getting into a heated argument about which of you should go to the doctor with Dad next week.
  • You or your siblings criticize the way you think another person is being, for example: selfish, bossy, uncaring, irresponsible, or worse.
  • You feel that none of your siblings understands what Mom needs the way you do and you are the only one who can do certain things.
  • You or your siblings generalize a discussion, saying, for example, “You always do this!”
  • You or your siblings criticize the way one another feels, for example, “You don’t care anything about Mom.”

Here, I stole this from Family Caregiver Alliance.

Tips for Winning More Support from Your Siblings

  1. Try to accept your siblings—and your parents—as they really are, not who you wish they were. Families are complicated and never perfect. There are no “shoulds” about how people feel. They are not bad people or bad children if they don’t feel the same as you do. If you can accept this, you are likelier to get more support from them, or, at least, less conflict.
     
  2. Do not over-simplify. It’s easy to assume that you are completely right and your siblings are all wrong—or lazy, irresponsible, uncaring, etc. Each person has a different relationship with your parent, and each person’s outlook is bound to be different.
     
  3. Ask yourself what you really want from your siblings. Before you can ask for what you want, you need to figure this out, and that’s not always as simple as it seems. First of all, ask yourself whether you really, deep down, want help. Many caregivers say they do but actually discourage help. So, think hard. Do you want them to do certain tasks regularly? Do you want them to give you time off once in a while? Or do you feel you have everything under control but you’d like them to contribute money for services or respite?
     
  4. Or—and this is a big one for many caregivers—do you really not want them to do anything but you’d like more emotional support? Many caregivers feel lonely, isolated, and unappreciated. If you’d like your siblings to check in on you more, ask them to call once a week. And tell them it would really help if they would say “thanks” or tell you you’re doing a good job. They are more likely to do this if you don’t criticize them for what they are not doing.
    • Ask for help clearly and effectively.
    • Asking is the first step. You might ask for help by saying: “Can you stay with Mom every Thursday? I have to get the shopping done for the week and it gives me some time to myself.” Don’t fall into the common trap of thinking, “I shouldn’t have to ask.” Your siblings may assume that you have everything covered so they don’t recognize the added responsibilities and “burden.” They are involved with their own lives and struggles and not so attuned to yours that they can read your mind. Also, if you’re not exactly sure what you want from them, you may be giving them mixed messages.
    • Ask directly and be specific. Many caregivers hint or complain or send magazine articles about the hardships of eldercare. But these strategies do not work well.
    • Ask for what’s realistic. People get more when they don’t ask for the impossible. So, consider the relationship your sibling has with Mom or Dad and ask for what that person can really give. If your sister can’t spend ten minutes with Mom without screaming at her, don’t ask her to spend time; ask for something that’s easier for her, like doing paperwork or bringing groceries.
       
  5. Watch how you ask for help—and steer clear of the cycle of guilt and anger.
    • Avoid making your siblings feel guilty. Yes, really. Guilt makes people uncomfortable and defensive. They might get angry, minimize or criticize what you are doing, or avoid you. That is likely to make you angry, and then you will try harder to make them feel guilty. They will attack back or withdraw even more. And round and round you go.
    • Sometimes your siblings will criticize you because they are genuinely concerned about your parents. Try to listen to these concerns without judgment and consider whether it is useful feedback. At the same time, be bold by asking for appreciation for all that you are doing—and remember to say thanks back when someone is helpful.
    • Be careful of your tone and language when you request something. It’s not always easy to hear the way we sound to others. You might think you are asking for help in a nice way, but if you’re angry, that’s the tone your siblings will hear. And they’re likely to react in unhelpful ways.
       
  6. Get help from a professional outside the family. Families have long, complicated histories, and during this very emotional passage, it is often hard to communicate with each other without overreacting, misinterpreting, or fighting old battles. Even the healthiest families can sometimes use the help of an objective professional. People like family therapists, social workers, geriatric care managers, physicians, or clergy can help siblings establish what is real about a parent’s health and needs in order to help distribute responsibilities more equitably. In family meetings, they can help you stay focused on the topic at hand and help you avoid bringing up old arguments.
     
  7. Steer clear of power struggles over your parent’s assignment of legal powers. Whether or not you have been given your parents legal powers over finances or health, you need to remember that it is your parent who has made these decisions. If you have your Mom’s or Dad’s power of attorney, be sure to keep detailed records and send your siblings statements about how you have spent Mom’s money. This may seem like a lot of extra work, but record keeping is required by law, and being open will reduce distrust or distortion—and lawsuits. If a sibling has been given legal power, try to accept your parent’s decision and don’t take it as a personal attack on you. Do your best to work with the sibling who has the authority by presenting expenses and bills in black and white. If the sibling who has the purse strings doesn’t cooperate, then bring in a professional to explain your parent’s needs and to mediate. If you are concerned about manipulation, a changed will, or undue influence, contact your local Adult Protective Services.
     
  8. Don’t let inheritance disputes tear your family apart. If you feel wronged by the way your parents have divided their money and property, it’s natural to be upset, especially when you are grieving. You may feel that you deserve more because you have cared for your parents. If that’s what you feel, you need to discuss this with your parents while they are alive and can make these decisions. If you suspect foul play by another sibling, then this is the time to consult an attorney or Adult Protective Services.

Yet, research shows that most parents feel a need to leave their estates equally as a sign of their equal love for all their children. When they divide things unequally, it’s often because they are worried that a particular child will be in greater need. Whatever their reasons, remember that it was your parents, not your siblings, who decided this. Think hard before you take your anger or disappointment out on your siblings. They are what remains of your original family, and for most people, this relationship becomes more important after parents die.

The above 8 steps are from Family Caregiver Alliance

Will you agree to operate as a team for the best quality of life possible for your mom/dad? Teams set clear goals and responsibilities for team members. Everyone has a skillset, use the best person for the job. Set weekly calls with an agenda that has 3 things on it. Never more than 3. Focus on the here and now. NEVER start a statement with “you.” Use, “I feel, about a situation. Your bothers and sisters may have different ideas about the care needed. That is good. Talk about it and see if better options arise.

Be fair about the division of responsibilities. When you get off track, go back and focus on your goals for your mom or dad. You did write them down, didn’t you?

Shameless plug – I help families figure out where they are, what they will need in the future, develop an action plan to move forward and guide them.

Pat

Signs it is Time to Hire an In-home Caregiver

Posted on May 25, 2022 by - #alzheimers, in-home care

A Wednesday, like any other Wednesday, you go for a visit to your mom’s house for a mid-week visit and to take her a few groceries and you need to pee before you leave. You go to the hall bathroom, turn on the light and the toilet does not look like it has been cleaned in a month. There is a ring around the bowl, dirt on the floor, the countertops are visible soiled and there is soap scum and mineral deposits in the sink.

You know what happens next, don’t you? You start reasoning things away. “Oh, she must not clean this bathroom every week, since she does not use it.” “She must not feel good or she may be tired.” “She is missing a lot of dirt, dust and grime, we probably need to get her to the eye doctor.”

May 25, 2022

Observe the home conditions

All of those things may be true. But, there could be other reasons. Do you ask about the hall bathroom or do you just observe, make a mental note to check on it next week? Are you brave enough to check out the master bedroom and bathroom?

What do you see in the kitchen? What do the countertops look like? Is the sink full of dirty dishes or are the dirty dishes placed into the dishwasher – but not washed? What does the refrigerator look like? Expired food? Old leftovers, that are growing mold.

How many excuses do you hear? “Oh, I’ll get to it this weekend.” I was sick last week.” “It looks good, to me.” “I’ll do it later.”

Maybe, they are just getting older and they need a little help with the cleaning. Arthritis is a bitch. Low back pain can have you down and out. Look for clutter or things not put away. Look for clothes in a pile or basket, clean, but not folded. Look for garbage not taken out regularly. What does the house smell like?

Can you determine if there are physical limitations that make house cleaning hard, if not impossible now? Hire a housekeeper or clean it for them.

Check-in again 6 months later

Let’s go 6 months to a year or so down the road. You begin to notice other things …

    • They wear the same outfit multiple days in a row.

    • Their hygiene is noticeably in need of attention.

    • They are telling you they can’t find important items or you notice they are regularly missing must-haves like glasses, hearing aids, etc.

    • They are missing trash day, and trash is accumulating at the house.

    • They are not opening their mail and may have overdue bills.

    • They seem more quiet or lonely.

    • They have unruly hair

    • They look scruffier, more so than usual

    • They have lost or gained weight (due to frozen meals or junk food)

    • Unexplained bruises (usually due to falling)

    • They are forgetting appointments

    • They are forgetting words or repeating themselves

    • They have a personality change

When you notice some of the things listed above, it is time for an assessment and a plan of action for in-home care. They will not usually volunteer any information. They will, however, deny any problems exist. They may or may not realize they are forgetting things. When they do become aware that things are not “right,” or that they really are forgetting things, watch out. They can get really uptight and angry. The goal is not to set off the dynamite, it is to diffuse it.

ADLs (Activities of Daily Living) 

You may hear the phrase Activities of Daily (ADL’s) living, which are self-care tasks that can no longer be performed or are very hard for them to do now.

    • Get into/out of bed or chair

    • Toilet hygiene

    • Bathing or Showering

    • Getting Dressed

    • Personal hygiene

    • Eating

    • Walking / Climbing Stairs

    • Safety /emergency responses

IADLs (Instrumental Activities of Daily Living)

Another phrase is Instrumental Activities of Daily Living (IADL’s). These are the activities related to living independently by themselves.

    • Shopping/ Getting Groceries

    • Transportation (Driving/Public)

    • Preparing meals

    • Managing Medication

    • Using Phone/Technology

    • Cleaning / Maintaining home

    • Running Errands / Appointments

    • Managing Finances

dADLs (Domestic Activities of Daily Living)

A less common phrase is Activity Assistance or Domestic Activities of Daily Living (dADL’s). A person is no longer physically able to do ____.

    • Companionship/Socialization

    • Mental exercise

    • Hobbies requiring dexterity or fine motor skill

    • Care of others

    • Care of pets

    • Activities in the community

    • Lite exercise

    • Exertive exercise

Sometimes, it gets to the point that your loved one needs 24/7 care or a skilled nursing facility.

SIgns it is time for an in-home caregiver 24/7

10 Signs your loved one needs 24/7 care.

    1. Frequent falls or compromised balance

    1. Confusion between day and nighttime 

    1. Difficulty eating or drinking without assistance

    1. Fainting or confusion due to dehydration

    1. Wandering from home or getting lost

    1. An increase in bathroom accidents

    1. Sleepwalking or wandering during the night

    1. After surgery, a hospitalization, or stay in a rehab facility

    1. Bedbound and/or developing bedsores

    1. Family caregivers are suffering sleep deprivation or have chronic stress that interferes with their own health, wellness, and quality of life

What Care Needs are Needed?

What type of in-home care would be best for your loved one and you?

    • Companionship – they are fairly independent but they are isolated or lonely

    • Help with ADL’s

    • Help with IADL’s

    • Mobility assistance – getting in and out of chairs or bed; toilet sitting and rising

    • Memory or Cognitive decline/impairments

    • Personal care

    • Preparing meals

    • Pet care

    • Taking them to Dr. appts, visit friends or family

    • Light housekeeping

Let’s go ahead and get in the housekeeping arena. What is light housekeeping? Light housekeeping is a task that the care giver does to help provide better care for the client. NOT the entire family!

What IS and IS NOT Light housekeeping

Light housekeeping duties DO include:

    • Clearing away dishes after meals

    • Preparing/cooking meals

    • Drawing baths and setting out towels

    • Hang up towels and washcloths to dry or place in laundry

    • Cleaning sink, bath tub and toilet after use

    • Wiping down spills and sanitizing surfaces

    • Spot mopping

    • Changing bed linens

    • Dusting off surfaces

    • Tending to house plants

    • Taking out trash

    • Pet care – feeding, a walk and general cleanup

    • Cleaning up clutter

    • Sweeping and vacuuming floors

    • Organizing closets and drawers

Light housekeeping duties DO NOT include:

    • Moving furniture

    • Washing windows

    • Scrubbing carpets and floors

    • Shoveling snow

    • Mowing the grass

    • Raking leaves

    • Scrubbing shower or tub

The caregivers do not bring supplies with them. They are not housekeepers. They are people helpers and companions.

It is a good idea to write down what your loved one needs and wants. Write down what the family wants, too. Look at the lists. Do you need an in-home caregiver or do you need a housekeeper? Some of you need an in-home caregiver, but you want to use them as an in-home caregiver AND a housekeeper or a maid. That is NOT going to happen. So, to prevent any misunderstandings, anger or frustration, everyone needs to be clear on what will and will not be done. Never assume, always ask and write it down. There are a few caregivers that want to sit around and play on their phone or watch TV. That is not a caregiver. It isn’t a companion either. Whoever is there to help your loved one needs to be engaging with them and helping them. 

Pat

Is it a psychiatric illness, psychosis, or a drug-induced problem?

Posted on May 12, 2022 by - #alzheimers, #caregiver, #caregivers, #dementia, overmedication

First, what is psychosis? Psychosis is a term used to describe when a person interprets or perceives reality in a different way than those around them. Psychosis may be a symptom of mental illness, but that is not always the case. Nobody knows exactly what causes psychosis. May 11, 2022 Observations

Typical story of a psychosis

Suzi visited her mom, Val Thursday after work. Suzi checks in on her about twice a week. Val is 70, active with high cholesterol, high blood pressure. arthritis, and mild depression. Val takes her medication regularly and as directed. Suzi notices that her mom is not quite herself. Val cannot follow the conversation and does not seem to be able to concentrate. The first thing Suzi thinks is, an UTI. Possible dehydration. They go to the Dr., but the urine test comes back clean. No infection and her electrolytes are all in the normal range. Hmm. Now what? Nobody seems to know what to do next, but wait and see. It is now a week later and Val is not better and in fact she is a little worse. She cannot remember if she has taken her meds or not. She is unsure of what has happened over the last three days. Suzi is getting more and more concerned. This is not normal and her mom has never been this way before. Suzi wonders if her mom is developing dementia, Alzheimer’s disease or mild cognitive impairment. In this particular case, her physician looked at her medications and had a consult with her pharmacist. They determined that most likely it was her blood pressure medication and/or her arthritis medication. Outside chance it could be anti-depressant med, but not likely. They began a withdrawal of HBP medication and started a different one. Val was some better, but not back to normal. It was not her arthritis medication; it was her anti-depressant medication. She was slowly weaned off of that and they did a wait-and-see approach to see if she needed to be on an anti-depressant anymore. Her mind cleared and she was back to her normal self.

Too often, we fail to look for signs and symptoms of drug-induced psychosis

While this case was a success, many more are not. No one thinks to check the medications. Why? Well, their thought processes go along these lines – She has been on these meds for three years or more. It came on suddenly, it must be a UTI or dehydration or she does indeed have the beginnings of mild cognitive impairment or a dementia. Medications are not without risks and problems over time. As we age, our metabolization and kidney function decrease. We cannot clear meds as quickly or as easily as we once did. You know when your loved one is “not right.” You may not know what it is, but you know that something is wrong. Push for answers, never accept it is “just old age,” dementia, or other assumptions. Blood tests and urine tests need to be done. Medications need to be checked. Hydration and nutrition need to be addressed. We want to rule out any fixable problems.

Psychosis can be:

    • Due to stressful life experiences or trauma
    • Part of a neurological condition such as dementia. Alzheimer’s disease, or Parkinson’s disease
    • Triggered due to a brain injury
    • Medication side effects
    • Effects of illicit or illegal drugs such as marijuana or cannabis
    • Effects of alcohol withdrawal
    • Triggered by menopause
    • Triggered during times of severe stress or anxiety
As you can see, it is not black and white. Many things can trigger a psychosis. By the way, marijuana is not the gateway drug to addiction. Trauma is the gateway to addiction. The self-medication, whether it is alcohol, marijuana, cocaine, hydrocodone, heroin, etc., becomes the problem due to another problem. We have to deal with the primary problems first! Yeah, I know, we chased a rabbit there. We don’t think about medications as causing a psychosis or a psychotic episode, but they sure can. Too often, we assume that it is a mental health issue. Maybe it is, but, we need to find out and rule out other fixable causes. Understand that some classes of drugs can cause psychosis.

Classes of meds that may cause psychosis:

    • Muscle relaxants
    • Antihistamines
    • Antidepressants
    • Cardiovascular medications
    • Antihypertensive medications
    • Analgesics
    • Anticonvulsants
    • Antiparkinsonian medications
    • Chemotherapy agents
    • Corticosteroids
    • Stimulants
From the list above, you can see that the possibility is real that the psychosis is from a medication and not mental illness. Alcohol abuse or misuse is another inducer of psychosis. Drug-induced psychosis usually only lasts until the medication/drug has cleared the body. Depending on the drug, the metabolization and clearing may take from 1 day to several weeks (if it is from a stimulant medication). A healthcare professional needs to be contacted. They can decide where the safest place to “come-off” the medication will be. Drugs can affect different people in different ways. What causes a psychotic episode in one person may not cause a psychotic episode in another person. Genetics plays a part. Life experiences play a part. Pre-disposition to mental illness plays a part. Remember, mental health disorders can cause substance use or misuse on its own. The mental health disorder can be exacerbated or intensified by medication use, abuse or misuse, but it is not caused by the meds. We should note that schizophrenia is not caused by drug use, abuse or mis-use. It may trigger schizophrenia symptoms in those people susceptible to schizophrenia.

Common signs and symptoms of psychosis includes:

Hallucinations – when you see, hear, feel or taste things that other people don’t
    • Hearing voices or sounds that others don’t
    • Seeing things that others do not see
    • Tasting things when you haven’t had or eaten anything
    • Feeling someone touching you who is not there
    • Smelling things which other people cannot smell
Delusions – unusual beliefs that other people in your “community” do not share, even though they feel real to you You may worry:
    • That you are being followed by secret agents or members of the public
    • People are out to get you or to kill you (may be strangers or people that you know)
    • That a chip has been implanted in your brain to monitor your thoughts
    • That your food or water is being poisoned
    • That you are a powerful person or God
Cognitive impairments – these relate to mental action (learning, remembering, functioning)
    • Problems concentrating
    • Memory problems
    • Difficulties understanding new information
    • Having a difficult time making decisions
Alcohol, amphetamines, phencyclidine (PCP), cocaine, and hallucinogens are among the most common causes of drug-induced psychosis. Symptoms of drug psychosis include:
    • Hallucinations. A person might see, smell, or hear things that aren’t there.
    • Delusions. A person may adopt demonstrably false beliefs, such as that a demon is pursuing them.
    • Dangerous behavior. A person might attempt to fly, harm themselves because a voice told them to do so, or become a danger to others. Some people who experience psychosis become aggressive.
    • Disconnection from other people or from reality. A person may appear catatonic or totally withdrawn.

Drug-related psychosis is distinct from other forms of psychosis in a few ways:

    • It appears while under the influence of or withdrawing from a drug.
    • It comes on suddenly.
    • It is typically more intense than other forms of psychosis.

Illicit/Illegal Drugs that most commonly cause substance-induced psychosis:

Methamphetamine Cocaine Marijuana LSY Peyote Mushrooms Ketamine (this is a Rx drug, but is used illicitly) PCP Ecstasy This overview is so that you know and understand that medications can cause psychotic episodes. What signs and symptoms to look for? Contact your healthcare provider for withdrawal and monitoring needs. Pat

Family Caregivers: When to take a rest day

Posted on April 13, 2022 by - #alzheimers, #caregiver, #caregivers, Caregiver Information

How caregiving is like working out, rest days are important. April 13, 2022 Why is it okay to take a rest day or two from working out but, it is not okay to take a rest day from caregiving responsibilities or helping your loved one? Think about that. We have the research and the information about listening to our bodies. That rest days are just as important as workout days. That if you cannot mentally concentrate on a lifting day, you are better off skipping that workout. If you push through your chances of injury are greatly increased. Then what? You got it… you will have to take four to six weeks off to heal. Helping out a loved one is the same kind of thing. Sometimes it is mentally exhausting and sometimes it is physically exhausting. You know that you need a break, but will you take a break? Will you push through? For how long? At what cost to you and your own health?

When you are a caregiver for more than 3 months

These are things that all of us need to think about. The problem is that we don’t think about these things. We just jump in and do. That is great, if it is for a short time. The problems arise after we have been helping for a longer period of time. Three to six months is what I consider a longer period of time. At about 18 to 24 months burnout has begun, if you have not gotten help or taken time outs. I get it. It is hard when you are in the big middle of things to think about what would be best for all involved. You get in to survival mode and you just do. Some of us don’t want to think about what would be best for us and for out loved one. Thinking is hard and it takes a lot of energy when you are learning new things or doing new things. Remember, you only have about three hours of focused energy per day to use. When are your good hours? When are you able to concentrate and work on detailed projects the best? The rest of the day, you can do the things that do not take as much mental energy or focus.

Habits improve our health and well-being

Developing habits are good for us. I am talking about positive habits. They decrease the expenditure of mental energy. Basically, when we have habits, we do them and we do not have to waste any mental energy or focus to think about the “who, what, when, where, why” things. We just do. We have already learned. Some folks call it discipline and others call it a routine. The demands of caregiving are exhausting physically and mentally.

The dreaded where to go when eating out question…

As with most of us, the most aggravating thing is trying to figure out where to go for dinner. How much time and energy is wasted on this simple act? We ask each other, “Where would you like to go?” The reply is usually, “I don’t care, where do you want to go?” Yes, you know what is coming next. “How about the Roadhouse, you ask?” Wait for it …. The reply is … “I don’t want to go there.” Here comes the hard part … do you say this or just think it? “Obviously, you do care. So, where do you want to go?” The back and forth continues, until finally a place is chosen. How do you feel after this discussion? Tired? A little miffed? Wondering why it is a chore to pick a place to eat? Sometimes, you can give them three options and they still do not like any of them. But, they don’t have any options to give you. Why is that? Sorry about that, I digressed. How does the rest of your evening go? If both of you can let it go, the evening will probably be okay. If one or both of you do not let it go, then chances are you will not be having pleasant conversation the rest of the evening. I wonder how much better and easier it would be if one of us said, from the beginning, “I would like to go to the Roadhouse, do you want to go?” The other person can say yes or offer another suggestion. Then the suggestion could be taken or not and they can go or stay at home. Shoot, one person gets to pick this time and next time the other person gets to pick. We are trying to get a consensus, but sometimes that is not possible. The same thing happens when you are a helper or care giver. You may or may not get a consensus. A “good enough” decision has to be made. NOT perfect. Progress, not perfection is what we are after. If you do not have habits or routine, try this for two weeks and see how you do and how you feel. Plan your breakfast every day. It does not matter if you eat at home or go and pick something up. Figure out what it will be the night before. Pick out your clothes and shoes the night before. Stick to this routine for two weeks. Hopefully, you will find that having a routine frees your mental energy for other things. What day or days do you clean the house? Do laundry? Change the sheets? Workout? Run or walk? Schedule them like an appointment, until they become a habit. When they become a habit, the less focused mental energy you will use and will have that energy to do other things. Learning to manage your energy is much more efficient than managing time. Which of these fits you today?

8 SIGNS YOU NEED A REST DAY

1. YOUR RESTING HEARTRATE IS ELEVATED 2. YOU FEEL TIRED 3. YOU’RE MOODY 4. YOU FEEL SICK 5. YOU’RE ALWAYS SORE 6. YOU’VE HAD A FEW BAD WORKOUTS IN A ROW 7. NOTICE YOU’RE NOT GETTING ANY STRONGER 8. YOU FEEL THAT YOU NEED A REST DAY From Tough Mudder https://toughmudder.com/blog/no-excuses/signs-need-a-rest-day/

14 Signs you need a rest day from being a helper or care giver

    1. Feeling “trapped” or hopeless
    1. Losing patience or compassion for your loved one
    1. Overreacting to small accidents
    1. Resenting or neglecting your loved one
    1. Withdrawing from your personal hobbies and friendships
    1. Oversleeping or not sleeping enough
    1. Overeating, not eating enough, or eating a lot of high-sugar foods
    1. Having health problems
    1. Abusing drugs or alcohol
    1. Having thoughts of suicide
    1. Making mistakes
    1. You are irritable
    1. Signs and symptoms of depression
    1. You feel exhausted most of the time
I can’t say it any better than Daily Caring has said it in their article.
https://dailycaring.com/6-ways-to-make-it-easier-for-caregivers-to-take-a-break/

6 WAYS TO MAKE IT EASIER FOR CAREGIVERS TO TAKE A BREAK

1. Accept that you’ll feel guilty Guilt is a normal part of caregiving simply because you care – it’s never going to disappear. Don’t let this stop you from getting the caregiving help you need. Taking regular breaks is the best way to maintain your overall health and your ability to provide care. Besides, how good would you feel if you never took any breaks and your health declined to the point where you could no longer care for your older adult? It doesn’t do them any good if you’re not physically or mentally well enough to be their caregiver. 2. Don’t ask your older adult for permission This isn’t a decision that your older adult gets to make. Many older adults refuse outside help because they’re uncomfortable with the idea. And someone with dementia doesn’t have the cognitive ability to make a rational decision. When seniors refuse, they’re not thinking of your needs and are often not considering their own true needs either. That’s why you need to make the decision, regardless of how they feel about it. All that matters is that they’re safe and well cared for when you’re not there. 3. Start before you really need it (if possible) It may take some time to find the right person to help and for them to learn the caregiving routines. That’s why it’s helpful to find help before you really need it. When you’re putting together a team of family, friends, and volunteers, it can be less stressful if you have some time to get the team in place and work out the details. To make the transition easier, you could have someone come and shadow you until they learn the ropes and can be left alone with your older adult. Or, you could have someone come for a short time in the beginning and gradually increase their time as everyone adjusts to the new situation. 4. Combine paid services with help from friends, family, and volunteers Hiring caregiving help can be expensive. But even if the cost is high, maintaining or improving your health is worth it. Being open to different sources of help also lowers the cost of taking regular breaks. Ask family or friends for help and seek out local volunteer programs that offer companionship services. Then supplement those hours with paid help as needed. 5. Check in to know that your older adult is well-cared-for You might be afraid or nervous to leave your older adult with a stranger or a family member with limited experience. To give you greater peace of mind, use simple, discreet ways to keep an eye on them and make sure they’re treating your older adult well. You could sometimes come back early as a surprise check-in to see what’s been happening. Or while you’re out, call occasionally to hear how things are going. Another good move is to ask the caregiver to take notes so you’ll know what happened while you were out. 6. Be creative when introducing the hired caregiver Nobody wants to be told that they’re getting a babysitter. If your older adult is very resistant to outside help, be sensitive and creative when introducing them to the household. A careful approach is especially important to prevent seniors with Alzheimer’s or dementia from reacting with fear or anxiety. For example, you could introduce the person as your helper around the house and have them help you with meal prep, light housekeeping, and simple care tasks. After a few of these visits, it will seem normal that they’re around and it will be easier for you to leave to “run errands.” You could also position it as doing that person a favor. Perhaps you could say that this person is in need of extra income, so you’re helping them out with a few hours of work here and there. If family or friends are helping, you could say that they wanted to visit and spend some time catching up. When they become regular visitors, you can start popping out to “run errands.” By DailyCaring Editorial Team Pat

How to make stress work for you?

Posted on April 6, 2022 by - #alzheimers, #caregiver, stress

April 6, 2022

How to make everyday stress work for you

Let’s start with a definition of stress.

Stress: a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances.

Now, notice that it does not say anything about negative or positive stress. Have you ever even wondered about that? Some may think that all stress is negative. Not true. Positive stress happens, too. Positive stress (Eustress) or good stress is the type of stress response that we feel when we are excited.

Stressors are thoughts or challenges. They can be positive or negative. Stress and how it affects you depends on your mindset.

What Is Stress Mindset?

Again, it’s how you view stress, what it means to you.

    • Is it a threat – something that will negatively affect your emotional state, your performance (physical and mental), even your health?

    • Or is it a challenge that lifts you to a higher level of energy and performance? (i.e. the stress response is helping you cope.)

Why Stress Mindset Matters

A negative stress mindset views stress as harmful, a threat – and therefore something to be avoided, averted, maybe even suppressed. Negative consequences are:

    • You’ll avoid challenges and opportunities for growth and development (as with a fixed mindset).

    • Trying to avoid stress, and in particular trying to suppress the body’s stress response, actually amplifies it and makes the feeling of stress and anxiety worse, and probably longer lasting.

    • You can get locked into a state of chronic stress response, which is actually harmful (unlike short bursts of stress) – your stress mindset becomes self-fulfilling.

A positive stress mindset means stress is a challenge to be embraced, moving you to perform better. The stress response is your body’s mobilizing energy to help you meet the challenge. It feels like excitement, not anxiety. In other words, although there is still a physical stress response, it doesn’t feel like stress at all.

I stole, I mean, borrowed this from Stress Resilient Mind

Distress Stressors:

    • Financial crises

    • Solo caregiving

    • Death of a loved one

    • Relationship problems

    • Illness or Injury

    • Abuse

    • Feeling neglected

    • Worrying about someone else

    • Work problems

    • Deadlines

What happens to the body during stress?

The body’s autonomic nervous system controls your heart rate, breathing, vision changes and more. Its built-in stress response, the “fight-or-flight response,” helps the body face stressful situations.

When a person has long-term (chronic) stress, continued activation of the stress response causes wear and tear on the body. Physical, emotional and behavioral symptoms develop.

Physical symptoms:

    • Aches (headaches, body aches, etc.)

    • Pains (lower back pain, neck pain, etc.)

    • Chest pain or heart racing

    • Trouble sleeping

    • Exhaustion

    • Dizziness

    • Muscle tension

    • Jaw clenching

    • Stomach problems

    • Weaker immune system

    • Trouble with or lack of interest in sex

Emotional or Mental symptoms:

    • Anxiety

    • Irritability

    • Sadness

    • Depression

    • Panic attacks

Stress is subjective and cannot be measured with tests. Only the person experiencing the stress gets to determine how severe it is! That being said, we can look at the physical and mental symptoms you are having and we can also assess whether you are handling the stress with healthy or unhealthy behaviors.

Negative Stress:

Examples of unhealthy behaviors:

    • Alcohol misuse – drinking too much and/or too often

    • Medication misuse – taking a medication for other than its intended purposes

    • Food misuse – overeating, excessive eating of sweets, eating disorders

    • Smoking

    • Gambling

    • Shopping

Examples of healthy behaviors:

    • Deep breathe for 3-5 minutes four to six times a day

    • Eat for nutrition

    • Hydrate with water and other non-caffeinated beverages

    • Walk or run regularly – four to five times a week for 20 minutes at a time

    • Practice relaxation techniques

    • Mindfulness meditation

    • Sleep enough

    • Make time for your hobby

    • Talk therapy

    • Re-framing the situation

    • Journaling for 10 minutes each day

    • Setting realistic goals

Find your own personal mantra:

    • I did not cause this and I cannot fix this.

    • I cannot control the outcome; all I can do is to do my best.

    • I cannot change this situation and no amount of worrying will change the situation.

    • It is okay that the situation is not okay, I am moving forward and doing my best.

    • I can control how I react now, and that is all I can or have to control.

    • It is okay that I did not get it all done today, I have accomplished a lot today.

    • Things are not too good today, but I have adapted.

    • Let it go = let it be just as it is, right now

Create your own mantra for stress management

Create your own saying or mantra. One that is empowering and meaningful to you.

Sometimes stress is telling you to pay attention, something needs to change around here. Something is out of whack. Look at it. Is there a fix? Yes. Great, do it and move forward. Is there a fix? No. Great, let it be and move forward.

I know, I know. It is not normal to let things be and move forward. We all have to understand that our problems arise when we refuse to believe that what is happening cannot be fixed and we don’t like it! It is the internal struggle that is wearing us out. How much better off would we be, if we would accept things the way that they are, right now? It does not mean that we don’t try to make things better. It does not mean that we don’t move forward. We adapt. We reassess.

Re-frame the situation

Re-frame the situation. How in the hell do you re-frame the situation? Start by noticing “stinking thinking.” Get ready to write some things. No, you cannot just think about them. That is part of the problem, you are in your head too much. Get the paper and pen or pencil.

    1. Write down your thoughts. (What is causing the anxiety?)

    1. Fact-check your thoughts. (Are they true? What is the proof?)

Truth is on a spectrum, it takes in to account your experiences, life stories and belief system. Facts are facts. They are true everywhere and for everyone.

 3.When you are really feeling stuck, ask, “Is this helpful?

4. What would you say to a close friend that is having the same thoughts are you are?

5. What is realistic, not positive? Finding a positive thought about a negative situation is not realistic. You don’t have to put a positive spin on it.

6. Screw “the bright side,” find “the meaning.” Get out of the “all-or-none” type of thinking. It doesn’t have to be an “either/or” situation, it can be a “both/and,” type of situation.

7. What is the next right action to take?

8. Try this for a week or two. Give it time or work or fail. Then reassess, make a plan and try again.

Reframing is not the best way to deal with every situation, but it sure can be a helpful tool. Use reframing to take an alternate view of the situation.

What are your skills and traits? Identify your strengths. Identify the areas that you are not so good at to find out either what you need to learn or you will learn that you need to let someone else handle the job.

If you are using all of your energy focusing on the negative, then you will have little to no energy left to find any good in the situation or to look for possible solutions. Use your energy wisely, you only have so much focused energy to use every day (about 3 hours).

Positive Stress:

Some stress can be good for you. How do you know if it is good stress?

Positive Stress Characteristics:

    • Focuses Energy

    • Motivates you

    • Within our coping abilities

    • Feels exciting

    • Improves performance

    • Short-term (you will still have physiological changes to your body)

    • Challenges for learning, growth and achievement

    • Sense of purpose

Positive Stressors:

    • New relationship

    • Wedding

    • Upcoming holidays

    • Retirement

    • Vacation

    • Pregnancy

    • Taking on a new project at work

    • Physical conditioning

    • Learning something new

    • Buying a home

    • Graduating

    • New job

    • Self-care

Positive stress is key for developing resilience. That is what we are all after. The ability to handle whatever happens both good and bad. To get back to the point that we know we are going to be okay.

Pat

How do the 5 Senses Change in a Person with a Dementia

Posted on March 3, 2022 by - #alzheimers, #caregiver, #dementia

No, they are not just being difficult.

March 2, 2022

Your loved one is having an unexpected reaction to the food they are eating. They stop eating, declaring that it has no taste. They become very apprehensive while walking through a door into a restaurant. They are nervous and are becoming more and more irritated. They cannot seem to judge how to sit down in the seat. They seem so distracted that they cannot read the menu or decide what to order.

These things and more are due to the brain not being able to process the sensory inputs correctly or in a timely manner. Their sense of taste and smell have lessened or may even become non-existent. When areas are too dark, they are unable to differentiate the floor from the walls, tables or chairs. Their depth perception is way off and maybe they begin to sway more and even fall more. Noisy places can send them over the edge. Too much sensory information overload can cause a meltdown and unwanted lashing out behaviors. The talking, the music, the televisions may be too much for them to handle.

You probably will not be able to calm them down and so it is best to remove them from the situation. They cannot follow the conversation with all of the distractions. They will become disoriented more easily and their balance will be affected as well.

Dementia Affects Changes in Perception and Processing

Why is this sensory overload happening? It could be an auditory processing disorder. That can be tested by an audiologist. In mild cognitive impairment, any dementia, including Alzheimer’s disease too much “noise” can strain the brain and make it work harder. Our brains only have so much focused energy to use during the day and an impaired brain, has way less energy to use. If they expend all their energy on the “noise” issue they have no energy left to work on anything else. They may be able to hear well, but they cannot process/interpret the sensory input. By the way, hearing also affects balance.

Sight/Vision issues:

    • Lack of depth perception

    • Decrease in ability to detect movement in the room

    • Decrease in ability to see colors

    • Problems recognizing people, faces or things

    • Shadows and light can mess with their minds and what they think they are seeing   .

    • They may be able to see, but are unable to interpret what they are seeing.

    • Things may appear blurry.

    • They may no longer have peripheral vision.

    • They will need more light to see.

Smell issues:

    • Sense of smell decreases

    • They can no longer smell smoke, odors, foods that may be spoiled.

Taste issues:

    • Sensitivity to taste declines in dementias.

    • The last taste to go is the sweet taste.

    • They will add a lot of salt, if the salt shaker is visible.

    • It is perfectly fine to use other spices to help them “taste” their food.

    • When the sense of smell goes, taste goes too.

Touch issues:

    • They may be unable to tell when things are hot. You might want to decrease the hot water heater temperature.

    • They may not know when they have cut themselves with a knife.

    • They may not be able to tell the difference in hot water and cold water on their body.

Hearing issues:

We talked a little about that in our example above.

    • A person with dementia may have normal hearing, but they will probably be unable to process the information correctly. Remember, we hear with our brains.

    • Competing noises are very distracting. Even if it is normal to you, a person with a dementia cannot filter out the extraneous noises.

    • Are the batteries in their hearing aids good? Are their hearing aids working?

    • Do they need to be checked by an audiologist? NOT, a hearing aid specialist.

    • They need a quiet setting. Low music is usually fine. TV is not good and needs to be turned off, while they are eating and talking.

Impaired movement issues:

    • They may take shorter steps.

    • They may drift to one side.

    • They may shuffle their feet.

    • They may slow way down as they walk.

Balance issues:

    • It becomes harder to judge distances and they may bump in to things.

    • They struggle or can no longer negotiate stairs.

    • Balance and coordination may be off and so they trip or fall more easily.

Stiffness/Shaking issues:

    • The muscles can become more rigid which makes it more difficult to move.

    • The muscles can become tighter and restrict movements.

    • The muscles can waste away from inactivity and malnutrition.

Coughing/Choking issues:

    • The ability to chew and swallow may become compromised and even lost.

    • It becomes easier for them to aspirate and a pneumonia set up in their lungs.

A person with a dementia is actually having brain failure. The brain can no longer receive, process, interpret and react to sensory signals appropriately. What is so frustrating is that sometimes ou

Pat