Category: #alzheimers

Can you have a difficult conversation and be respectful?

Posted on March 15, 2023 by - #alzheimers, #caregiver, #caregivers, #dementia, #parkinsons, difficult conversations, hard conversations

Sometimes, having a difficult conversation and being respectful don’t always go together. You can have a difficult conversation, but you can’t seem to reign in your emotions or you can talk about things that don’t really matter and be respectful. Think about it. How do you feel when you know a difficult decision must be made and you are facing a difficult conversation? Your heart begins to race, tension builds up in your body, and you are irritable. The conversation hasn’t even happened yet and you are all torn up. 

You are on edge and ready for a fight. You don’t want to have this difficult conversation, but you’re facing it all the same.   However, this is all in your mind. Nothing has happened, yet. Why do you feel this way? Past experience? Your racing thoughts are running amok and you are experiencing a stress response. You aren’t sure that a difficult conversation can be any other way than adversarial. Maybe, you don’t feel safe because you can’t predict the outcome. 

March 15, 2023

First, let’s figure out what your style of communicating is when you are stressed. Yes, you handle things differently when you are at peace with yourself and your surroundings. Stress impacts our ability to communicate. What toll are your relationships taking when you are not at your best?

Self-awareness plays a vital role in this arena. Are you aware of how you are feeling and why you feel that way? Are you aware of when it is not a good time to have a difficult decision because you are not in the best frame of mind? Did you know that it is your responsibility to get your shit together and then have the hard talks?

When you are self-aware and emotionally healthy:

·       You can intentionally respond to a situation. You think about the situation and act accordingly.

·       You are more open to others’ ideas and inputs. You are looking for the best solutions.

·       You are actually listening to understand and not just to respond.

·       You are empathetic to the other person.

·       You allow yourself to be curious about how the other person thinks and are open to changing your own mind.

·       You will allow yourself to seek out support from others.

·       You are willing to be understanding, supportive and fair.

·       You have the ability to be patient during the discussion process.

When you are not emotionally healthy or self-aware:

·       You tend to react to what the other person says and emotions escalate.

·       You will be more critical of anything the other person is saying.

·       You may even shut down and withdraw from the discussion.

·       You tend to personalize the comments and do some projecting of how you feel onto the other person.

·       You tend to be more judgmental and closed-minded.

·       You will do things on your own and not seek out help or guidance from others.

·       You will use manipulation, and verbal attacks to dominate the discussion.

·       You are impatient and that will lead to you becoming pushy and interrupting.

When we are tired, we can slide into the not-emotionally healthy or self-aware category. What is usually a small annoyance can become a mega monster deal to us and we react accordingly. Notice that I said, react. We are not being rational or acting in the best manner. Our brains have been hijacked by the amygdala (stressors and cortisol dump) and we are off on a tear. What we sometimes forget is that there are people whom we love and care deeply for on the receiving end of those rants and raves.

So, what can we do to be in the best frame of mind when we need to have difficult conversations?

·       Rest and get good sleep.

·       Do something physical each day for 15-30 minutes.

·       Write down 3 things that you are grateful for every day. Different things.

·       Be aware of what your inner critic is saying to you. Is it true or correct? If not, then you have to get verbal with the inner critic and tell it to shut up. Your inner critic needs a new job but that is another discussion.

·       You may not be able to rid yourself of stress, but you can manage your stress. Hopefully, you will do that in constructive ways.

We can all benefit from learning how to become better communicators. Take a course, do a seminar, or look up good articles online.

Our scenario:

Let’s look at the driving issue that seems to pop up. Here is the situation. Your dad needs to stop driving. He no longer has quick enough reflexes. His arthritis and neck issues are worse. Maybe there is some dementia that is now becoming an issue. You have noticed dings in the car on the sides and in the rear. The reasons could be physical, mental, or both.

You know that this is going to be difficult and it could get ugly. Hence, the stress response. You also know that this very difficult conversation has to happen soon because you are truly concerned for their safety and the safety of others.

Now that you have the scenario, what is the best approach for you to use when this discussion has to happen and you want to be helpful, loving, and respectful?

Family dynamics will play a part in this. It is best for the person who will have more sway with them to do the talking. This is not a guarantee, but it will help. Keep the main thing the main thing. Don’t get off-topic and into the weeds. Know what your “main thing” is. Next, you will need to state the “why’s.”

The main thing – stop driving

Why’s –         

§  Cognitive decline (dementia, Alzheimer’s disease, or other impairment)

§  Problems with mobility or coordination

§  Vision problems

§  Hearing loss

§  Sleep disorder

§  Seizures

§  Inability to turn their head and neck very far

All right, you have your main thing and your “why’s.” Now you need to prepare for the emotions that will come from you and them. This is where you discuss and listen with respect. That means no name-calling, no cussing, no threatening, no bulldozing over their concerns or pushback. 

They are going to push back. They are going to fight you on this. The best way to prepare for this is to listen to what their concerns are and understand what they are trying to say. I guarantee you that there are many things not being said and that is the real problem. Understand the other person’s point of view. Keep the conversation going as long as it is productive and emotions don’t send it off the rails.

What is not being said is, “I don’t want to give up my independence.” 

                                          “I want to go and do as I please.”

                                          “I don’t want to bother you or be a burden.”

                                          “I don’t want you judging me for where I go or what I do.”

                                          “I am your dad, you are not my dad.”

                                          “I will not be told what I can and cannot do.”

Take the time to understand things from their point of view. Imagine yourself being in the same situation because you’re going to be in the same situation one day so put yourself in their shoes.

You can keep stating the facts. You can even talk about the concerns you have for their safety, their passenger’s safety, or someone else’s safety. All of that is great and necessary. You have not addressed their concerns and wants. How will you handle that? You have to listen to the other person’s perspective.

You have to meet their needs and help them with what concerns them about not driving. Who will take them to the store, to the mall, to breakfast or lunch with friends? Who will take them to play golf, bowl, or to a ball game? Can they use a driving service such as a Taxi,  Uber, or Lyft? Will you set up the drive to and from for them? Who will pay?

Whew! You may or may not have a resolution, yet. You may have to table this discussion until a later date. You may, in fact, have to have this discussion multiple times before a resolution is reached. Unless they have a cognitive impairment, you may never get them to stop driving. Their doctor may have more sway than you and that is fine to use the doctor if needed. You can’t make someone do or not do anything. They get to make the decision, even if it is a bad decision. 

The purpose of this exercise was to show you an example of a difficult discussion and some things to think about before jumping in. To show you that you can prepare, you can listen for understanding and provide alternative solutions to meet their needs.

You are in control and in charge of your own emotions, feelings, and how to act and react. You are not in control of any other person’s actions or reactions.

A few tips:

·       Use “I” statements. Do not use any sentence that starts with ”you.” It makes people defensive.

·       Do not be sarcastic.

·       Do not use the words, “always” or “never”

·       Look at them in the eye.

·       Do not interrupt them. Let them say what they need to say.

·       Stick to their abilities and not their age.

·       Remember to value the relationship.

·       Be solutions-oriented. Ask them to be solutions-oriented.

·       Watch your tone.

·       Remember to deep breathe.

·       It is okay to disagree. Maybe a neutral person needs to do an evaluation of driving skills.

·       Have them drive you around.

·       Maybe, they can drive short distances in the mornings or early afternoons (avoid rush hours).

·       Know when to start or not start the conversation. Is this the best time to have this discussion? What else is going on? The time may never be perfect, but you need to find the best time possible.

·       Remember your purpose in having this difficult decision. You want them and others to be safe.

With any difficult discussion, emotions run high. Do what you can do to be prepared. Maintain your composure and learn to listen for understanding.

What disrespect looks like and sounds like

·       Disrespectful people do not care about the other person’s feelings.

·       People stop talking when you enter a room.

·       They do not accept responsibility when both of you share some of the blame.

·       They continuously interrupt you.

·       Angry or rude outbursts

·       Bullying

·       Shaming you

·       Arrogant behavior

·       Sarcasm or Taunting

·       Sighing, Making faces, Eye rolling

·       The silent treatment

·       Dismissing ideas without listening to them

You can become a more effective communicator. You can have difficult discussions with less stress. You can do all these things. You can learn better communication strategies. You know what you want to accomplish. Are you also willing to agree to disagree and improve the situation? 

Pat

Could it be an adverse reaction to a medication?

Posted on March 2, 2023 by - #alzheimers, #caregiver, #caregivers, #dementia, #parkinsons, #parkinsonsdisease, Caregiver Information

It is springtime, and you are excited to be outside and doing your thing. Whether it is cleaning up, planting, prepping, or mulching. It is great to be outside, even if you are just enjoying the weather. Time to go inside, get cleaned up, and ready for dinner. All of a sudden, you start itching and you notice a rash on your forearm. Do you think about an adverse drug reaction? Do you think about a drug reaction? 

March 1, 2023

You assume that it must be poison ivy or some other weed irritation. Over the next couple of days, the itching is still making you crazy and you are beginning to feel miserable and aggravated. You begin taking over-the-counter Benadryl or some other antihistamine. Two weeks later, it is better, but it is still there.

What is the cause? Yes, it could be poison ivy mixed up in the mulch you spread. Yes, it could be some other weed or, who knows what? It could also be one or more of your medications. Most of us don’t relate itching and redness to a drug reaction. Especially, if we have been taking our meds for a few months. 

Adverse drug reactions are not side effects. An adverse drug reaction is always negative and may cause harm to you. A side effect is a secondary effect of a medication, which could be harmful, beneficial, or neutral. Usual side effects are where you see a lot of off-label use of medications.

A drug allergy is a serious matter. Technically, it is an adverse drug reaction. In a drug allergy, your body recognizes “it” as a foreign and dangerous substance. The body then activates the immune system to fight it off. You may see rashes, hives, itching, wheezing or other breathing problems, and inflammation. In severe cases, you may see anaphylaxis, which is life-threatening. True allergic reactions happen in about 10% of adverse reactions.

The time frame is different for a drug allergy and an adverse reaction (usually). In a drug allergy situation, the immune system evens occur within minutes to a few hours after exposure. Rarely, does it occur after 24 hours of exposure.

An adverse drug reaction can occur anytime after exposure to the medication. Where it gets confusing or better yet, forget about it when it happens weeks or months after you begin taking the medication. Some adverse drug reactions can be due to the drug itself or an interaction with another drug.

Symptoms of an adverse drug reaction vary by medication, but common ones include:

·       Digestive system bleeding

·       Heartburn

·       Fatigue

·       Sleepiness

·       Nausea/Diarrhea

·       Lightheadedness

·       Dizziness

·       Constipation

·       Skin rashes

Adverse drug reactions aren’t caught a lot of times. Most of the time the physician sees the complaints as “another problem.” Guess what you get? Yep, another prescription. It takes time and effort to figure out what is going on and what may be causing the problem. This is where you can use someone, like me to help figure things out.

We didn’t discuss intolerance, but it is a possibility too. You cannot tolerate a certain medication or the side effects that may occur. Usually, this has to do with metabolism and your body’s ability to use the medication.

Drugs that most commonly cause Adverse Drug Events that lead to a hospital visit:

·       Antibiotics

·       Anticoagulants (blood thinners)

·       Insulin

·       Opioid pain meds

·       Benzodiazepines

·       Renin-angiotensin drugs (blood pressure meds) Ex. ACE Inhibitors, ARB’s (Angiotensin Receptor Blockers, ARA’s (Aldosterone-receptor antagonists)

·       Lipid modifying agents

·       Urological medications (ex. Urinary incontinence meds)

Drug reactions to medications happen more than we realize. Strange symptoms may occur such as unexplained drowsiness may be a symptom. The dosage prescribed may be too much for you. Remember, allergic reactions occur fairly quickly after the medication has been administered. Anaphylaxis reactions may occur immediately or within half an hour of administration. Anaphylaxis is a life-threatening reaction. You may see these terms, adverse drug reaction, drug reactions, adverse reaction, allergic reaction, or adverse event and they are almost always talking about an unintended adverse drug reaction. Anyone taking a drug can have reactions to medicines even if they have taken the drug before and had no problems. 

You know your body and how it feels. Don’t dismiss things that are happening for more than three or four days. You may not know what it is, but you know that you are “not right.” Yes, it could be the side effects of a drug or it could be a possible adverse drug reaction. Your response to a drug may be different from another person on the same drug. You may know folks that feel this way and maybe they could benefit from my services. Let’s have a chat and see. I don’t know if I can help them or not until we talk and it is free.

Leave a message if I am unable to answer.

Pat 865-684-8771

Husband Caregivers, Shower your Wives…learning how to do it better

Posted on February 8, 2023 by - #alzheimers, #caregiver, #caregivers, #dementia, #information, #multiplesclerosis, #parkinsons, Caregiver Information, husband caregiver

Tips on how to be more helpful when assisting your loved one to bathe or shower. These are things that you need to think about when becoming a spousal caregiver. Understanding your own feelings and beliefs in this personal issue. Understanding your loved one’s feelings, wants and beliefs in this most personal area. It is difficult to ask for help with personal hygiene chores when you can no longer do your own self-care. February 8, 2023 You two have been through a lot. You are a team, usually. You are both independent and self-sufficient. Then, things change and you are no longer self-sufficient. You have become a care recipient.  You need help because of a stroke. You need help because of cancer. You need help because of Parkinson’s disease. You need help because of Alzheimer’s disease or other dementia. No matter the reason, your wife needs help with one of the most intimate parts of her life. It could be a temporary help because of surgery, We don’t think about it much, but we each how our own ways of doing things. We have our own patterns and our own order of doing things. Most partners do not know their significant other’s daily routine. When you are the helper, you must be aware that your loved one has their own way of doing things. They have their own schedule and order in which to do things.

Learn Each Other’s Routine

Try this experiment. Each of you writes down exactly what you do from when you wake up to when you go to sleep that evening. I mean everything with the time of day noted. We won’t get into the getting dressed procedure. I know, some of you have this puzzled look on your face. We all have our preferred way of getting dressed and we have very specific ways we do things. For example, I place my left arm first, whether it is my shirt or jacket. It is automatic for me; if I even try to do it with my right arm first, I can’t do it easily AND I am out of sorts mentally. Now, the next day write down your partner’s daily routine with times noted. Do this from what you have observed or what you assume they do. You will probably get the big things right, but probably not all of the little things. Find a time to go over the information. Make it a date night. Talk about it and see how close you are to knowing each other’s routine. What are the similarities? What are the differences? This is a big-picture type of exercise. We all have our own routines. When you are the helper or caregiver, it is best for the caree (your loved one) to be as comfortable and safe as possible. In order for that to happen, you need to know their routine and their times. We automatically do things in our routine and we don’t realize that others have other routines. Doing their routine becomes doubly important when your loved one has Alzheimer’s disease or another type of dementia.

Men don’t automatically know how to care for female anatomy

Guess what? Female anatomy is different from male anatomy. We don’t automatically know how to help the other person with bathing. We don’t automatically know how to wash and clean some private areas effectively. We don’t automatically know what to lotion and what to powder. Sometimes, we don’t know what we don’t know until we get in the big middle of it. That can be very stressful. Caregiving is hard and you want to provide the best personal care possible. What follows are the supplies needed and the how-to tips to help you help your wife.

Bathroom

    • Grab bars installed properly and permanently. Place one above the water turn-on area, too.
    • Non-slip grips on bottom of tub
    • Portable heater to warm up the room
    • Shower seat or shower chair for tub
    • Tub rail grab bar
    • Hand-held shower head with 5–7-foot hose length
    • Remove trip hazard rugs

Shower Supplies

    • 4 Towels
    • 2 Washcloths
    • 2 Hand towels
    • Pouf for bodywash – may have a handle
    • Bar soap – gentle or sensitive skin type for washing privates and underarms
    • Bodywash -for washing other body areas
    • Shampoo
    • Conditioner – apply on hair and immediately rinse off
    • Lotion
    • Facial moisturizer
    • Deodorant
    • Barrier cream or protectant – if needed
    • Powder or Talc – if needed
    • Gloves – nitrile seems to be the best
    • Pump supplies are easier to use
    • Cotton terry robe will help in the drying off stage, too.
    • Always have them sit on the toilet to pee first before getting into the tub. Warm water brings on the urge to pee and if it happens in the tub, no big deal move on.
    • Let the water run for 1 -2 minutes and check the temperature on the inside of your wrist before putting any water on them.
    • You may want to place a hand towel on the shower seat for warmth or comfort
    • Encourage them to wash everything that they can wash – promotes dignity and independence
    • Use a gait belt – get trained in how to use one first
    • As the helper, you need to remain calm and relaxed. It will be slower than you anticipate. If your approach is more of a loving gesture and a desire for them to feel good, it will go a lot smoother.
    • If you have the attitude of getting in, getting it done, and getting out…it is probably time to hire this job out.
    • Use the gloves – it helps to separate intimate touch from helping with a need
    • Use a hand towel over their lap to promote privacy and dignity while they are seated on the shower seat

Order of Washing -Be Gentle

    1. Wash the face and neck first and dry the face
    1. Have them place a washcloth over their eyes while you wash their hair and condition it. Ask them to tip their head back. Scalp massages feel really good.
    1. Dry the hair with a hand towel
    1. If they can, have them hold the shower handle
    1. If they can wash themselves, then you soap up the washcloth or pouf
    1. Wash their back in a circular motion all the way down to the buttocks
    1. Wash the arms and underarms next
    1. Wash the front torso and under the breasts – wash skin folds well, too
    1. Rinse them off really well
    1. Place a towel over the top half of the body and pat dry a little (helps keep them warm)
    1. Wash the legs and have them lift up one at a time or gently lift them up. If they can stand then have them stand.
    1. Wash the feet and in between the toes (while they are sitting)
    1. Tell them it is time to wash private parts. Offer them the option to wash their own private parts, even if you need to help some.
    1. Use a clean washcloth and clean the vulvar area – use a different clean area of the washcloth for each swipe
    1. Clean from clean to dirty = front (vaginal area) to back (anal area)
    1. Separate the labia with one hand and clean gently with a downward motion to the perineum area (area between vagina and anus)
    1. Separate buttocks and clean from bottom to top area
    1. Rinse very well
    1. Talking throughout the bathing process and telling them what you are doing or will be doing next seems to help everyone calm down
    1. Use a towel to pat dry and dry well
    1. Areas that need extra care to be dry – vulvar area, anal area, underboob area, all skin folds and in between toes
    1. Gently get them out of the tub. Dry them off again or place a terry cloth robe on them to help with that. They can either stand or sit on the commode (lid down and with a towel placed on the lit) while you lotion them, powder them, and put on deodorant. Dry and style the hair. ** Note, some want to dry and style their hair before applying lotion and anything else. Some brush their teeth either before getting into the shower or right after getting out and drying off. Ask what they want to do. **
    1. Apply barrier or skin protectants to areas needed (usually incontinent folks need this)
    1. Never lotion between toes (want to prevent fungal or other infections)
    1. Places to put powder or talc – underboobs (skin under the breasts, and torso area where they touch), skin folds (anywhere there is skin-on-skin contact that does not get a lot of air circulation)
    1. Do not put anything in or right around vagina (it is self-cleaning)
    1. Help them into their clean clothes
    1. They may need a nap after a bath, it is hard work
Getting clean makes all of us feel better. Change the sheets on the bed on a bath day. Some bathe every day and some bathe 2 or 3 times a week. That is fine. Find what works best for your loved one and you. It is also fine if you hire a shower aide to come into your home to help with bathing your loved one. You will still have to do the daily cleansing needed which includes face, underarms, underboobs, skinfolds, feet, in between toes, vulva area and anal area. This is sometimes referred to as a sponge bath.

Products to Consider:

Soaps/Body Washes

CeraVe Body Wash for Dry Skin

Kiehl’s Grapefruit Bath & Shower Liquid Body Cleanser

Aveeno Restorative Skin Therapy Sulfate-Free Body Wash

Dial Clean + Gentle Body Wash, Aloe

Neutrogena Hydro Boost Fragrance-Free Hydrating Body Gel Cream

Olay Moisture Ribbons Plus

Dove Beauty Sensitive Skin Body Wash

Dove Body Wash for Dry Skin

La Roche-Posay Lipikar Wash AP+ Body & Face Wash

Lotions/Moisturizers

CeraVe Moisturizing Cream

Cetaphil Restoring Lotion

Eucerin Daily Hydration Lotion

Vaseline® Intensive Care™ Advanced Repair

Lubriderm Daily Moisture Lotion Shea + Enriching Cocoa Butter

Gold Bond Healing Lotion

La Roche-Posay Lipikar Balm AP+ Intense Repair Moisturizing Body & Face Cream

NIVEA Essentially Enriched Body Lotion

Facial Moisturizers

CeraVe AM Facial Moisturizing Lotion

La Roche-Posay Toleriane Double Repair Face Moisturizer UV SPF 30

Aveeno Positively Radiant Daily Moisturizer SPF 30

Cetaphil Daily Facial Moisturizer SPF 35

Unscented Neutrogena Hydro Boost Water Gel Face Moisturizer with Hyaluronic Acid

Aveeno Calm and Restore Oat Gel Moisturizer Unscented

Cetaphil Gentle Clear Moisturizer

Neutrogena Oil-Free Daily Sensitive Skin Face Moisturizer

Eucerin Redness Relief Day Lotion Broad Spectrum Sunscreen

Best Body Lotions for Men

Nivea Men Maximum Hydration 3 in 1 Nourishing Lotion

Aveeno Daily Moisturizing Body Lotion

CeraVe Daily Moisturizing Lotion

Dr. Jart+ Ceramidin Body Lotion

Vaseline Intensive Care Lotion

Jack Black Cool Moisture Body Lotion

Dove Shea Butter Lotion

Men Facial Moisturizers

Neutrogena Hydro Boost Face Moisturizer

Kiehl’s Ultra Facial Moisturizing Cream with Squalane

La Roche-Posay Toleriane Ultra Soothing Repair Moisturizer

Bulldog Mens Skincare and Grooming Original Face Moisturizer

Jack Black Double-Duty Face Moisturizer SPF 20

Cetaphil Fragrance Free Daily Facial Moisturizer

Skin Care Products for Incontinence – Barriers and Protectants

BAZA Clear Skin Protectant Ointment

Sween 24 Superior Moisturizing Skin Protectant Cream

Calmoseptine Ointment

3M Cavilon Durable Barrier Cream

Boudreaux’s Butt Paste Rash Cream, Original

Incontinence Cleansers

PeriFresh No-Rinse Perineal Cleanser

Aloe Vesta Skin Cleansing Foam

Theraworx Protect Advanced Hygiene & Barrier System

Toileting Information for husband caregivers

Posted on February 1, 2023 by - #alzheimers, #caregiver, #information, husband caregiver

Dementia, Surgery, or other Health Problems Require Toileting Help

Personal hygiene care is probably one of the most needed guides that no one ever talks about. It is up close and personal. Dignity is important. Good information on the differences in needs of women versus men is needed for guidance and “how-to-do.” Let’s face it…we really only know what we need and how we do things. Someone else has no idea what you need and want. If you are helping someone of the opposite sex, some things that may be going through your mind include…
    • How do I do this hygienically?
    • Am I too rough?
    • Am I wiping the right way?
    • Am I helping with their dignity or do I just want to “get it done?”
    • I hate this part.
    • I want to do this right.
    • I want to help them, but I have no idea if I am doing it right
February 1, 2023 The anatomical differences. The personal “wants” differences. The “how I do it” types of things may be different for each of us. Personal hygiene is definitely one area where very open and honest information is communicated for understanding. Never assume that you know best. Ask how you can best help them.

Tough Conversations, But Necessary Conversations

These are tough conversations but they don’t have to be awful. Maybe addressing it as a clinical need will help both of you to begin the conversation. Is it time to use adult undergarments that help with urinary or bowel incontinence? If she has hemorrhoids, how to best wipe and lessen the chance of discomfort or pain? Do any cleansers or ointments need to be applied after peeing or pooping? Do they prefer to be patted dry or wiped? After pooping, do they pat dry or wipe? Do they use a wet wipe? There are so many things to discuss. If you are used to being in each other’s space when bathing or toileting then you will have a leg up on everyone else. If you are used to being in private when you bathe or toilet, then you will have a little more “getting used to each other” in that situation. Maybe you can pee in front of each other, but pooping is a private situation for you. That is cool, make sure your loved one is seated on the toilet comfortably, and leave the room until you are called back. Try things and see what is more comfortable for both of you. Have gloves(nitrile) easily accessible in the bathroom and wear them. Wearing gloves seems to help each other to feel more comfortable with wiping.

Items to have on hand:

    • Nitrile gloves
    • Disposable white washcloths
    • Pump sanitizer
    • Personal cleansing wipes (Be careful, some of these cause a lot of irritation.)
    • Barrier cream, if needed (Calmoseptine, A&D Ointment, Boudreaux’s Butt Paste, etc.)

Niceties or Aids to help:

    • EasyWipe Toileting Aid
    • Butt Scrubber Multi-Purpose Toilet Aid
    • Bottom Buddy Toilet Aid
    • Bottom Wiper Self Wipe Long Reach Wiper – for larger or obese people
    • Squatty potty

Cleaning with tissue paper

    1. Grab more than one sheet of soft tissue paper. 4-6 squares & roll over the hand to make a roll ( I know, some people wad toilet paper.)
    1. Wipe from front to back. You are cleaning the vulva area and not the vagina. The vagina is self-cleaning. Some people use toilet paper to pat the area dry and that is fine.
    1. Make sure the area is completely dry.
    1. Be gentle
It’s important that you wipe front to back, as wiping the opposite way — back to front — can spread bacteria. After pooping, you will still need to wipe the vulva area as we pee when we poop. Prepare toilet tissue as before and you will wipe from front to back from the perineal area to past the anus. Yes, you may pat the area until it is clean. Place a little pressure on the area to clean it. Be gentle, do not wipe hard or aggressively. You may need to use a moist wipe and then pat dry. Wiping too much or too hard will cause anal itching and that will be maddening. 2 -4 wipes should be good. Note: The perineum is the area between the vagina and the anus.

Note: Sometimes wet wipes irritate the vulva or anal area. If it does, use warm water and a washcloth to clean the areas and then pat dry.

**Wash your hands after dealing with any bodily fluids, secretions, or stool.** If you have wiped and still feel like you need to wipe more….it may be because of one of the following … Dr. Sameer Islam

Feeling like you may need to wipe more may be due to one of these

    1. Hemorrhoids (hangs on to feces)
    1. Pelvic Floor Dysfunction (muscles are too tight)
    1. Weak Rectum Muscles (leakage & soiling issues)
    1. Foods can Weaken Muscles (Spicy foods, Greasy foods, Coffee)
    1. Wiping Wrong

Tips to fix the problems

    1. Fix your hemorrhoids
    1. Get a bidet
    1. Increase your fiber- slowly and drink your water to stay well hydrated
    1. Pelvic Floor Therapy – see a physical therapist for too tight or too loose pelvic floor
    1. Wipe correctly – front to back
Dr. Sameer Islam YouTube videos

Are you wiping correctly? https://www.youtube.com/watch?v=ItFKEtEt4

Aging Eyes Need More Light, So How Much & What Kind?

Posted on January 19, 2023 by - #alzheimers, #caregiver, #caregivers

Aging eyes need twice as much light as young eyes to read and do tasks. Folks with Alzheimer’s need even more light. More contrast is needed. For older eyes, yellow backgrounds or yellow highlighted areas are easier to read. Use black ink or dark blue ink. There is a point where we have to get over “pretty” and use functional.

Have you ever wondered why folks with dementia “see things that aren’t there?” It could be shadows or a dark area in their field of vision. Have you ever wondered why a person with Alzheimer’s gets fearful and acts out for so seeming reason? It could be lighting, shadows or depth perception issues.

January 18, 2023

How do you see?

How do you see? Nope, not with your eyes. With your brain. Your eyes feed data to the brain and your brain computes to send back messages on what you are seeing. Now, imagine that your brain isn’t working very well and it can’t quite make out some of the data that is being sent. In fact, it is corrupted information. GIGO – garbage in, garbage out.

One of my experiences

My brother and I were out driving one night, shooting the breeze and looking around. All of a sudden, I caught a glimpse of something on the right side of the car. It was a freaking deer. It did not hit the car, thank goodness. He saw it too, just a glimpse of something. Our eyes had taken in the data and our brains had processed what we saw. What we think we saw. We reasoned out it was probably a deer. We had no time to react, just jump because we were startled. Good thing it didn’t hit the car, because we sure didn’t have time to swerve.

Now, imagine that same scenario but now my brain has an injury or is failing. What will happen to the information that has been gathered by the eyes and sent to the brain for processing? It depends. Where the damage is in the brain and what still works will impact the quality of information and processing ability. The information sent back from the brain may have been nothing, to a bear, to a spear, to a person, or to a deer, who knows what it interpreted?

Folks that have Alzheimer’s or another Dementia…their Brain is Failing

In dementia or Alzheimer’s, the brain is failing. It cannot process and interpret as it once did. It cannot give factual information. It still gives information; it just may be incorrect information. Can you see why we would hold on to what our brain is telling us? We saw “x” and our brains interpreted either, “x, y or z” and relayed that information back. I know what my brain told me and here you are trying to tell me that it isn’t real? The fight is on! Don’t be telling me what I saw was wrong, hell, I saw it. You get the gist.

You want to lessen the anxiety and agitation by using appropriate lighting throughout the home. You will need brighter lights. You will need to eliminate or decrease dark corners and shadows. Dark corners and shadows tell our brains to be wary and afraid. Use natural light as much as possible. Always cover bulbs with a shade.

Check out the Home for Problem Areas

Look at the hallways. Is there light bouncing or reflecting off of the floor? Minimize glare. Does the floor look dark like an abyss? Look outside, what does the area look like when the sun starts going down? Look for shadows or reflections that may be troublesome. Close the curtains when it begins to get dark outside. Shadows may be mistaken for strangers.

Suggestions

Use contrasting colors to help them find things. Use a red plate for their food. Use colorful bed linens so they can find their bed. Maybe it is time to place signs up with arrows for finding the toilet, bedroom, kitchen, etc. Hang a sign, with their name on it, on their bedroom door. Label the hot and cold water handles.

A side note, sometimes you may need to cover mirrors because the person with dementia no longer recognizes their own face.

Bulbs, Watts, LED’s, CFL’s

Maybe you need 100 watts or 150 watts of bright light. Make sure the lamp can handle that amount. It is so confusing now with all of the different types of bulbs. Read on the packaging to find what you need. Ask someone who works there for help in determining what may be best for you. Some of those things are expensive. Make sure your lamp or socket is designed to hold that type of bulb and the wattage of the bulb. For example, a 32-watt compact fluorescent light (CFL) correlates to the same amount of light that a 100-watt bulb does. Then you have to deal with the height of the bulb. It will be a process.

Your goal is brighter and more consistent lighting. Getting rid of shadows and dark corners. Give it a try for a few months and see how much better their life will be and your life will be.

Pat

What skills training do you need, now that you are a family caregiver?

Posted on December 14, 2022 by - #alzheimers, #caregiver, #caregivers, #dementia, #parkinsons, Caregiver Information

As long as your loved one is fairly independent, all is well. The time will come when they need you to physically help them.  Getting up from a chair. Help with bathing, Help to get out of bed. Help with toileting. Can you do it correctly and safely for both of you? Think about what can happen if you don’t know how to move and transfer someone correctly. You can wrench your back and then what? They can fall and hit their head or break a bone. December 14, 2022 Maybe your mom can help you to move, right now. What happens when she can’t and is dead weight? Your dad is able to use safety bars to toilet and shower, right now, but what about over the next year?

Keep them safe and yourself healthy – Skills You Need

Not only do you have to figure out how to help them, but you also have to figure out how to keep yourself from getting hurt while helping them. Are you really in good enough physical shape to help them? Even if you are in great physical shape, do you have the knowledge and training to do the transfers and get them up safely?

Did you know that there are online courses or videos to help you learn the skills needed?

There are some online courses or videos for you to access. It would benefit you and your loved one to view the videos and take a course or two. I am sure that many are on YouTube, but be careful to find out where their expertise came from. Educating yourself and learning new things will help you and your loved one. Be safe. Be safe for yourself. Be safe for your loved one. Learn how to put a gait belt on your loved one and how to use it appropriately. Be prepared to help them up from the floor after a fall. Do you know how to check for injuries Before moving them?

Remember these essential safety tips

DON’T
    • Bend from your waist
    • Try to pull your older adult up
    • Ask them to hold onto your shoulders or neck
    • Let them use toilet paper holders, towel bars, or other non-sturdy items to help them sit or stand

A few resources for you to check out:

Getting in and out of a car video by Teepa Snow

https://www.youtube.com/watch?v=te4SW_0Af8k
https://seniorsafetyadvice.com/
How to use a gait belt
https://www.youtube.com/watch?v=i2nJ3roEyD0

Training Programs and Resources

Alzheimer’s Association

https://www.alz.org/help-support/resources/care-education-resources#elearning

Family Caregiver Alliance Events & Classes

https://www.caregiver.org/connecting-caregivers/events-classes/

The Veteran’s Administration

https://www.caregiver.va.gov/

The Caregiver Action Network

https://www.caregiveraction.org/resources/instructional-caregiver-videos

Generations Home Care

https://www.homecaregenerations.com/family-learning-center/

American Red Cross

http://www.programsforelderly.com/caregiver-family-caregiver-red-cross.php

Family Caregivers Online

https://familycaregiversonline.net/caregiver-education/video-tips-training-for-caregivers/

Invest in yourself for your loved one.

Be safe, Pat

It looks like aging, but what if it is malnutrition?

Posted on December 8, 2022 by - #alzheimers, #caregiver, #caregivers, #information, Caregiver Information

It may be disease-related or due to other reasons that can be addressed and fixed. December 7, 2022 You notice that your mom has lost weight. Maybe, she was a larger woman who could lose a few pounds. She tells you that she is not hungry or doesn’t have much of an appetite. She does not appear to be underweight, so you don’t think too much about it.

Unintended Weight Loss

A couple of weeks later, you see her again and you notice a little more weight loss. The question to ask is, “Do you mean to lose weight?”  Unintended weight loss can become a problem. She also appears weaker and more tired.

Ask more questions such as:

    • Is your mouth sore or is it hard to chew?
    • Is it hard to swallow?
    • Do you feel like you are choking when you swallow?
    • Have you lost your appetite?
    • Does your stomach hurt?
    • Do you have swelling or are you retaining fluid?
    • Can you only eat a little bit at a time?
If yes, to any of these, a visit to the primary care physician is in order.

Physical issues also contribute to malnutrition

Try to find a physical cause. Can they get to the store? Can they cook for themselves? What are they eating? Frozen dinners, soup, cheese, and crackers? Are they drinking enough fluids? They may be eating, but it may not be enough for their nutritional needs. There is usually an imbalance of protein, fat, carbs, and calories that the body needs every day.

What else can cause malnutrition?

It could be their medications. It could also be dementia or depression. Chronic disease also decreases appetite.

Common chronic diseases that affect (usually decrease) appetite:

    • Cancer
    • COPD
    • Dementia
    • Depression
    • Chronic kidney disease
    • Chronic liver disease
    • Heart failure
    • Underactive thyroid (hypothyroidism)
    • AIDS
    • Digestive illnesses – Irritable bowel, Crohn’s, Ulcerative colitis

Common things that may decrease appetite that is usually self-limiting or can be more easily treated at home.

    • Cold/Flu
    • Dehydration – when we don’t get enough fluids we feel sick
    • Stress
    • GERD – acid reflux
    • Sadness
    • Grief

Problems caused by malnutrition:

    • Increased risk of hospitalization.
    • Increased risk of death.
    • It weakens the immune system, making them more susceptible to “getting” an infection.
    • It causes muscle weakness and bone loss which can lead to an increase in falls and fractures.
    • It slows wound healing.
    • It decreases heart muscle mass.
    • It causes poor respiratory function.
    • It increases anxiety.
    • It increases self-neglect. (Poor hygiene, Unkempt appearance, Neglecting to clean the house, Hoarding, Not wearing suitable clothing for the weather, Messy hair, Dirty nails, Unusual odors, etc.)

FYI

**An obese person can still be malnourished.** **It isn’t always diagnosed in a hospital setting or a physician’s office without information from the patient or family members.** If you suspect your loved one is malnourished, you may have to be a more vocal advocate to get it checked out. It is perfectly okay for you to speak up and keep speaking up until you have been listened to and someone does a malnutrition lab workup. A Registered Dietician (RD) can be of tremendous help. Pat

I Have Too Many Choices, How Do I Choose, or is this analysis paralysis going to kill me?

Posted on December 1, 2022 by - #alzheimers, #caregiver, #caregivers, #multiplesclerosis, #parkinsons, Caregiver Information

Too many choices, too many decisions, too much overwhelm, and decision fatigue all contribute to you feeling and being stuck. Do you feel as if you are “just surviving” every day? That stinks, doesn’t it? But, what to do and how to get started moving forward again? November 30, 2022

Maybe, it is what to do first?

Sometimes, the issue is that we do not know what to do first. Not only that, but we stress over what is the most important thing to do first. We are afraid to be wrong and so, we do nothing. I think the acronym F.A.I.L. is appropriate here, it is your First Attempt In Learning. Yes, you are learning what works and what does not work. Failure is an event and never a person.

Afraid of making the wrong decision- pros and cons

We like certainty. We want to know that we have made the “right” decision. Our brains do not like uncertainty, it makes them work overtime to feel safe. Our brains get hijacked by our emotions and we cannot think logically. Stop overloading your brain. You do have a decision-making process, but sometimes overthinking causes you to procrastinate. Do you feel like you have to “shop around” and keep all your options open before making a decision? Two or three would be ideal, but we have to go to 10 places and keep comparing. How many of us get too obsessed or too anxious? You know who you are and you are nodding your head in agreement. You may have many options, but are they good options for you and your loved one?

Analysis Paralysis

How much energy are these decisions taking? Is it really worth that much stress, anxiety, or energy-wasting? Have you ever thought about when this choice overload happens? It usually happens when we don’t have enough good information or knowledge in the area of need. Use your good resources. Set your limit to three of those resources. Find a knowledgeable person and have them provide you with your best two or three options for your needs. (That would be a plug for my services, in case you didn’t catch it.) I know that you are afraid of making the wrong decision. I want you to know that you can make another choice if the first one isn’t working very well. You can pivot. It really is okay.

What does feeling stuck look like?

    • You have been searching for something that interests you and you find it. Then you look at all the steps it takes to do it and talk yourself out of doing it.
    • You keep thinking about what could be better or different all the time. You may even be future-oriented. You get into the “when I get this, I will be happy” or “when this happens, I will be happy.”  The problem is that you are here, right now in the present and this is where your focus for happiness would be best served.
    • You really want something – for yourself – a new relationship, a better job, a new house, to get in better shape, etc. – However, before you start, you lose your motivation. Maybe, you do get started and then you lose your motivation.
    • You have a feeling that something isn’t right in your life, even if you can’t put your finger on it.

Is it a lack of motivation?

Motivation is red hot for a while, but then it burns out and all you have are a bunch of ashes. What now? For one, the realization that motivation is never enough to achieve a goal. It takes commitment to the process. Doing it even though you don’t feel like it is another realization. Be consistent. Continue after a break. Maybe you feel trapped as a family caregiver. You don’t mind helping, but now you feel like you never get out. It is a difficult adjustment. Be careful, resentments can build up before you know it. You feel like you are missing out. You feel trapped by doing the same tasks over and over. Consider this, challenges are matters of perspectives and our own attitudes. Is there some middle ground that you and your care receiver can agree to? Challenge yourself on “stinking thinking.” It could be your perspective and attitude that are the problems. Feelings change and they don’t last forever. It is best to make choices on the information that you have at the time. You will encounter a tough decision and you will feel overwhelmed. There are no perfect solutions so stop trying to find the perfect solution.

Some ideas to help you not feel trapped:

    • Only you can change the things in your life that you are unhappy about.
    • Live a healthier life by moving (walking/running) and eating better.
    • Be consistent, motivation alone is not enough.
    • Accept uncertainty. We can make good decisions, but we cannot choose the outcome.
    • Reconnect with your personal values.
    • What can you do, right now, that will be helpful?
    • Be the hero of your story and not the victim. Stop saying, “I don’t want …”
    • Stop focusing on the things that are causing you to suffer. Focus on whatever fills you up.
    • You may not have good options, so choose the option that you will regret the least.
    • See if you are in the “all or nothing” thinking. It can be a “both/and.”
    • Write down some “I could …” statements.
    • Write down three different things you are grateful for every day.
    • Be proactive rather than reactive. You will have more control and less stress.
Determine the number of good resources you will use. Three and no more than five. Do a pros and cons list. Throw the right choice out the window. Good enough for now, is okay. Pat

Secrets that folks over 65 try to hide from their families…

Posted on November 10, 2022 by - #alzheimers, #caregiver, #caregivers, #dementia, Caregiver Information

    1. Short on money

    1. Buying a lot of “stuff”

    1. Gambling

    1. Drinking more alcohol

    1. Prescription drug misuse or abuse

    1. Illegal medication misuse or abuse

    1. Binging on sweets

    1. Financial abuse – from a family member, a friend, or a caregiver

    1. Elder abuse or Neglect – from family, friends, neighbors, or caregivers

    1. Automobile accidents

    1. Driving Infractions or Getting a Ticket for something

    1. Hiding bruises – either from falls or abuse

    1. Eating a lot of take-out

    1. Changes in the way they dress

    1. Closing the doors to rooms – to keep junk hidden, the messiness, or the dirtiness

    1. Limiting driving to short trips and not far from home

    1. Poor personal hygiene – from not changing clothes to not bathing nor brushing teeth

    1. Unopened mail

A few behaviors that may mean they are trying to hide information:

    1. They discourage visitors. It may get to the point of them not letting anyone inside their home. It starts as “We will meet you at the restaurant.” “The house is such a mess, let’s do it another time.” They may even say that they know “you are busy with your job.” They begin to avoid or conceal certain things. 

    1. Hiding mistakes – driving, spending, buying, They don’t want to argue or deal with repercussions.

    1. They make a lot of excuses for their forgetfulness or their behaviors

    1. Changes in activity – you are looking for changes in their normal routines

    1. Speaking for their spouse

Why might they do some of these things? “Denial (De Nile) isn’t just a river in Egypt. Secret still gives them some control.

    1. Denial – If you don’t acknowledge it or talk about it, then it doesn’t exist and nothing is wrong.

    1. Pride – They can’t admit that they can’t do a lot of things necessary to live on their own. We all are an independent and prideful bunch. 

    1. Embarrassment – maybe they become self-conscious or ashamed of what they can no longer do. Especially if it has to do with personal hygiene. Embarrassment rears its ugly head when they have some financial difficulties. They cannot afford food, medication, and getting repairs done to the house. It may or may not be any fault of their own.

    1. Fear – of losing their independence

    1. Depression – chronic health conditions seem to cause a rise in depression. Depression is not always the ‘woe is me” stuff.

Depression is not a normal part of aging. It may mimic dementia.

Signs and Symptoms of Depression in folks 65 years and older:

    1. Memory impairment

    1. Trouble retrieving some words

    1. Takes longer to process information and deliver an answer

    1. Depressed mood

    1. They no longer have pleasure or want to do the things they used to enjoy

    1. Noticeable weight loss or weight gain

    1. Sleeping too much or too little

    1. Feeling fatigued

    1. They experience feelings of worthlessness

    1. Having excessive or inappropriate feelings of guilt

    1. Recurrent thoughts of death or suicide

    1. Feel confused

    1. Struggle to pay attention

    1. Be grumpy or irritable

    1. More aches and pains

    1. Move more slowly

    1. Crying spells

    1. Apathy –  lack of interest or concern

Medical reasons for changesIf they still have their partner, the partner will try to help and cover for them. When they are tag-teaming it is more difficult to figure out what is going on. It isn’t always intentional, but it can be intentional. To be fair, it may have happened slowly and they are taking care of each other the best way they know how to help. Observe to see if the spouse is finishing tasks for them, finishing sentences for them, or making excuses for some type of behavior.

November 9, 2022

Too Secretive Because of Too Independent?

No one likes to admit that they may need help. We are all very independent and quite stubborn. Most of us fear losing our mental faculties more than we fear losing physical capabilities. I understand that. Too often, people feel that they are “getting dementia” or “Alzheimer’s disease,” but that may not be the issue at all. Which is why it is important to go through a diagnostic workup. It could be fixable, such as better nutrition and hydration. It may even be a type of depression. Of course, it could always be a generation thing to keep secrets. They may also ignore or have resistance to seeing “what is” so they don’t have to deal with it or reveal it. 

  1. Falls
  2. Pain
  3. Dizziness
  4. Financial difficulties

We always want to rule out the things that can be ruled out. What if it is a lack of nutrition, dehydration, loneliness, or isolation? Those are fixable and doable. If it is depression some medications can help. Shoot, even running has been shown to help mild to moderate depression. Once we know what it is, it really is much easier to handle.

Pat

What Caregivers Do NOT Need to Hear from Others

Posted on October 26, 2022 by - #alzheimers, #caregiver, #caregivers, #dementia, #parkinsonsdisease, Caregiver Information

You may mean well. You may even mean what you say, but you are hurting them rather than helping them. Will you be open to learning how to better support someone who is helping a loved one? It will require some effort and thinking on your part.

October 26, 2022

I meant to help

I have said some things in the wrong way. I really meant to help, to be supportive and available. What went on in my own mind, did not play out well for someone I was trying to help. I had to realize that I was looking at their situation through my own ways of caregiving and what I would have liked help with.

If you truly want to be a help to your friends or family members who are caregivers, you have to buck up and take the time to learn what they need and want help with. No, that does not mean rapid-fire questions. A lot of the time, they do not know what they need or want because they are in hell and too stressed out to think.

What do you do? How about you learn what they don’t need and don’t need to hear?

    • Judgement – Don’t second guess them or their choices. You don’t know their family dynamics and you are not in their shoes.

    • Horror stories – They don’t need or want to hear about all the messed up crap that happens in nursing homes or what happened to “so-and-so.” Just shut up, there is no good that can come from that.

    • Don’t ask what they need – Granted, this is difficult as you may want to help, but you don’t know what to do. Give them the gift of your time. You know the things that need to be done at your own home. Mowing, cleaning the house, laundry, running errands, grocery shopping, and making dinner.

    • Don’t make more work for them – Don’t just show up, don’t call and say. “the gang is coming over to visit you.” They will feel the need to clean up and get the place cleaned up.

    • Don’t ignore them – Maybe they can’t attend functions much anymore, but you can keep including them. Update them and let them know that you are thinking of them.

Now we will move on to, Things You Should Never Say

    • “If you ever need a break, call me.” – What the hell. They do need a break and they don’t have time to go take a shower, much less call you.

    • “You have to take care of yourself, too.” – Do you really think that they don’t know that? You are adding more stress and guilt, so unless you are offering to sit with their caree (care receiver) so they can take care of themselves, shut up.

    • “You look tired.” – They are tired.

    • “I don’t know how you do it.” – They have no choice.

    • “God doesn’t give you more than you can handle.” – That statement is wrong on so many levels.

    • “You will get your reward in heaven,” – You have just discouraged them more.

    • Why do you keep going to visit them, they won’t remember it anyway.” – Their loved one still deserves love and care. They may not remember your name or who you are to them, but they sense and know that you are someone who loves them and cares for them.

    • “You should put them in a home.” – You don’t get to decide what is best for them and their loved ones. Pretty much, anything that has a “should” or “would” in it … Keep it to yourself.

    • “I could never do what you do.” – You don’t know what you will or won’t do until you are in your own situation. All relationships are different. All families are different.

    • “I wish there was something I could do to help.” – Bullshit, you would do something if you wanted to. We will get into the things you can do and say next week.

    • “You should get some help.” – Do you really think that they haven’t thought of that? Maybe, they can’t due to finances. Maybe, they have hired folks that do not show up.

    • “How are you doing?” in front of the caree (care receiver) – Really? Do you want them to vent right in front of their loved one?

    • “You need to find some time to relax.” – I am sure they would love to, but when and how?

    • “Don’t feel guilty about …” – Feeling guilt is a part of caregiving.

    • “Everything happens for a reason.” – No, it doesn’t. Stuff happens and we have to deal with it.

    • “I know just how you feel.” – No you don’t. You may have had a caregiver type of experience, but it is not the exact same. Situations are not exactly the same, people are not exactly the same, and needs are not exactly the same.

    • “What doesn’t kill you, makes you stronger.” – Do you think this hardship is making them stronger? That is foolish.

    • “At least it’s not cancer.” – At least it’s not…statements cause more pain to the caregiver.

    • “Just think positive thoughts.” – Way to go, you have just increased the feelings of guilt and pressure they put on themselves.

    • “Your mom (dad) used to be a great person.” – Don’t talk about their loved one in the past tense. It is hard enough to watch a loved one decline, without being reminded of what has already been lost.

Think before you speak. Practice what you will say. Say it out loud. How does it sound? Is it uplifting or helpful? How might it be taken by someone who is stressed out and exhausted?

Practice Saying It Outloud Before You Say it to the Caregiver

If you find yourself using any of the following, don’t do it. “I think,” “You should,” “I would,” “You could,”

Shut up. I get it, I want to help and fix things too, but some things are not meant to be fixed by you. That is a hard lesson, but a helpful lesson on being fully present and letting them vent. You just sit there and be the listener.

Next week we will talk about what to say and do to help a caregiver.

Pat

Husband’s say, “It’s just something you do.”, but won’t say, “I am a Caregiver.”

Posted on October 20, 2022 by - #alzheimers, #caregiver, #caregivers, #dementia, #multiplesclerosis, #parkinsons

Men often feel unprepared when their role in the family changes. Even if, they played a significant part in child raising (changing diapers, bathing, reading to them, holding them when they cry, etc.), they do not know how to help an adult that needs help with ADLs (activities of daily living).  It is just something that you do. You may have seen your mom or dad help their parents or each other when needed. The word “caregiver” never entered your mind. Maybe, “caregiver” is a negative word these days.

October 19, 2022

Ruck up – “man up” for a difficult situation

I like that phrase. It doesn’t matter if you are a man or a woman, the sentiment is “handle it.” You can handle it and you will need help. Everything may be okay for a year or so, but, eventually, you will need help. Learn to delegate. You will still have plenty to do.

Is there a difference between caregivers or male family caregivers?

I did not identify as a caregiver because I was not doing hands-on care. I was helping out. I was doing what needed to be done. Along with working full-time and dealing with my own home and life with kids.  I was scheduling, and I was seeing to her needs. I ran errands, took her to doctor appointments, cleaned the house, mowed the yard, and did the laundry. My dad did not identify as a caregiver because he was providing care for his spouse. I wish that we didn’t have to deal with gender roles. It keeps getting less and less, but it is still an issue., especially with personal care. 

I didn’t want to be seen as a caregiver

I did not want to be seen as a caregiver. Maybe it was because I did not want to admit to myself the reality of the situation. If I did, then it would be real. I did not want to be seen as a caregiver because it made me feel weak. I wanted to “fix it,” but I couldn’t. I didn’t want to be a caregiver because it meant I had to give up some things that I wanted to do. I didn’t want to give up my life and free time. If I admitted that I was a caregiver, I would have to make changes in my life.

I did not realize that I had choices, opportunities, and helpers willing to help. I could have boundaries and provide good care. I could take care of my own needs and my family’s needs as well as care for my mom and my dad, who was the primary caregiver.

My dad never identified as a caregiver

My dad never identified as a caregiver. This was his wife and he was going to keep her at home and do what needed to be done. He learned a lot. He learned how to cook a little, clean the house, do the laundry, pay the bills, make doctor appointments, etc.

He never talked about how he felt. It didn’t matter, he had a job to do and it was going to get done. A few years later, a few mini-strokes later, a personality change and a decline in physical health all began to take their toll. Mama was not rational and daddy did not know what to do or how to handle it. He finally told me that he did not know how much more he could take. Long story short, we got her the help she needed (when daddy stopped fighting us) and things improved immensely.

He stayed in the CCU (critical care unit) area for families from the first visit until the last visit. He got to visit 10 minutes about every 4 hours. I couldn’t get him to leave, even when I was there. He finally agreed to stay with me at my house (which was 20 minutes away versus an hour from where he lived). Mama was there for about a week. She did not make it.

He did what was necessary and he was a caregiver

He took early retirement and did what needed to be done for his family. He loved her and had responsibilities as a man and husband. My brother and I saw his example of how you take care of your family. Was he perfect? No. Is that a requirement? No. Did he love her? Yes. Did he do the best he could? Yes. Was he a good caregiver? Yes.

My brother and I saw as we were growing up that you help your family in whatever way that you can. You jump in and do what is needed. We didn’t think anything about it, we just did it. That is the way a lot of us were raised.

That is great, but nobody really talked about the stress and emotions that you deal with while helping. Times were different when I was growing up only about 50% of the females or moms worked outside of the home. It is much higher than that today. Men are more hands-on with child rearing too. Good thing, too. 45% of caregivers are now men. They need different things than women caregivers. Hell, one thing is that they need to identify as “caregivers.” Men care provide just as good of home care as women can. 

Men approach caregiving differently

Men approach caregiving responsibilities differently from the way women do. Men focus on tasks and practical things that need to be done. Not so much on the nurturing tasks such as bathing, toileting, or dressing them. They can do them, but they need some training. Men are problem solvers and they tend to hire help to do some of the responsibilities that they either cannot do or do not want to do.

How frustrated might you be if you had never changed the sheets or cooked a meal? Yes, you can learn but you can also hire that stuff out.

Who are the ones most likely to have major health issues?

The strong silent types are those that will have major health issues sooner rather than later. Sadness is a part of all caregiving. Things that are lost deserve to be grieved. You may even hear men say, “What good does talking about it do?” It keeps crap from getting bottled up and further stressing you out. I get it, being stoic is about self-preservation. You can’t deal with the sadness, anger, and anxiety so you push it all down. It will eventually all come up and out. Support groups are great for all caregivers.

You are often unprepared and usually overwhelmed when the need hits. Why is identifying as a caregiver a good thing? It opens you up to possibilities of help and care. It also helps your primary care doctor know what to look out for in your own health needs.

Caregiving is a demanding job both physically and emotionally

Can you be a man and be a caregiver too? I think you can. Some men may feel it makes them look weak. That is not true. A caregiver has to be strong both physically and mentally. It is a very hard job. Strength under control is how I look at it. You have the physical strength when you need it, but you can be kind, nurturing, and loving too. To me, that is a protector. Another good thing about men as caregivers is that they are more vocal advocates for their loved one when they are in a caregiving role. 

Guys, you may feel that you are failing if you aren’t able to “fix-it.” You are not a failure. Sometimes, things cannot be fixed. You have to be strong enough to let things “be as they are.” That sucks and it hurts. It doesn’t mean that we do not have hope or work toward goals, but we can accept things just as they are, right now. I can accept reality but I never give up.

Feelings pop up, resentments pop up

You will feel alone. You will feel resentment. You will begin the grieving process before they are gone. It is your job to take care of your own physical and emotional needs. If you don’t then you will not be an effective caregiver for very long. Then what?

Have a list ready and share the care responsibilities that you can share

Place your to-do chores list on the refrigerator and leave a place for names of who will do the chore. People usually ask what you need or what you need to be done. Of course, you can’t think of a thing when they ask…

This way they can check the list on the refrigerator and pick what they can help with. Yes, you can put a time frame or day on the chore that needs to be done. Put everything that someone else could do on your list and see what you get.

Examples

    • Dinner Monday

    • Dinner Tuesday

    • Dinner Thursday

    • Laundry Wednesday (take home and bring back)

    • Clean the bathrooms

    • Mow the yard

    • Clean the gutters

    • Change the sheets Friday

    • Vacuum, Sweep, Mop

    • Sit with her from X to Y on Friday

    • Take her to the beauty parlor on ______ at _____

Getting help is not a sign of weakness, it is a strategy for being a successful family caregiver. 

Pat

Burnout stage or Nervous breakdown stage, as a Caregiver?

Posted on October 12, 2022 by - #alzheimers, #caregiver, #caregivers, #dementia, #parkinsons, Caregiver Information, stress

Nervous breakdown. What does that really mean? It isn’t used as a medical term or a diagnosis, but we all seem to know what it means. It means a mental health crisis. It means an emotional health crisis. It is also known as a breakdown of your mental health.

It happens when you have intense physical and emotional stress, with difficulty coping and you are not able to function effectively or normally anymore. You feel like you are losing control. The stress that you are under may have you feeling anxiety, fear, worry, stuck, overwhelmed, and/or nervous.  You are at the point where you can no longer function in life. Many caregivers will experience caregiver stress and exhaustion. 

October 12, 2022

Everyone’s Caregiver Stressors are Different

Everyone is different and everyone will have different stressors and reactions to those stressors. This is way past burnout.

A few things to watch out for:

    • You call in sick for a day or two (sometimes, longer).

    • You miss appointments.

    • You avoid or back out of social engagements.

    • You have trouble with healthy eating, exercising regularly, sleep, and your personal hygiene starts slipping.

    • You withdraw from people and don’t want to leave your home.

    • You lose interest in things that used to bring you joy.

    • Panic attacks.

    • PTSD flashbacks

Things pile on

We all have our own “set point” for a breakdown. Losses are a huge part, especially if they are stacked one on top of another. For example, a death, a divorce, losing your house, a terminal illness, being a caregiver, losing your job, family turmoil, severe financial strain, a chronic medical condition (a worsening chronic medical condition), inability to relax, continued loss of sleep, work stress, school stress, lack of self-care, etc.

As you can see, a lot of things can pile on. Step away, take a timeout! Get a talk therapy appointment, ASAP. You are no longer able to get out of this situation on your own.   Breathe, just deep breathe for 5 minutes.

You will have to make adjustments and learn better-coping skills. You will have to learn to say, “No.” You will have to take care of yourself physically and mentally before you can help anyone else. Yes, you can recover, but I want you to be able to prevent burnout. 

Burnout is more common. My wish for all of us is that we take better care of ourselves BEFORE we get to this stage. The same stressors apply, they may not be as intense or as long, but they could be.

Burnout is usually defined as chronic stress related to poor life and work practices, that produce exhaustion (physically, mentally, and emotionally). You are overloaded and overwhelmed. When a person is overloaded and overwhelmed with negative emotions and feelings rear their ugly heads. We have hostility, anger, and frustrations and we don’t seem to be able to cope or handle these negative emotions.

Extreme burnout will lead to a mental health crisis.

This article from Medical News Today, explains burnout very well.

Some causes of caregiver burnout include:

    • Emotional demands: A caregiver can feel emotionally drained, especially if you are aware that the person you are taking care of will not get better despite their efforts. For example, this could happen if a person is caring for someone in palliative care.

    • Conflicting demands: These are the additional demands a person has outside of their caregiving role, such as looking after children, going to a job, and making time for their partner.

    • Ambiguous roles: Often, the role of a caregiver is all-consuming. It is easy for a person to lose sight of who they are outside of their caregiving responsibilities.

    • Workload: Some caregivers may be looking after someone with complex needs. In these instances, it is important a person seeks temporary relief and gets assistance from other carers.

    • Conflicting advice: In some cases, treatment procedures may change as research progresses. While these changes aim to give people the best care, they can cause a significant amount of disruption and stress if a caregiver has an established routine.

    • Privacy: Additional clinical support, such as nurses and other healthcare professionals, may visit a caregiver’s home throughout the week. While this can be helpful, it can also take away their privacy.

All of these factors can contribute to a caregiver feeling overwhelmed, self-critical, and drained. If they do not address these feelings, they may start experiencing serious signs of caregiver burnout. Caregiving is both emotional and physically exhausting. 

Caregiver burnout can manifest in several ways, and some people may notice they are experiencing some symptoms more strongly than others.

Symptoms of caregiver burnout include:

    • disrupted sleep

    • persistent irritability

    • altered eating patterns

    • anxiety

    • increased alcohol consumption

    • high-stress levels

    • lack of joy

    • loneliness

    • loss of hope

    • suicidal thoughts

Additionally, symptoms can indicate what stage of caregiver burnout a person is in.

The three stages of caregiver burnout are:

    1. Frustration: A person starts feeling frustrated and disappointed that the person in their care is not getting better. They cannot accept that the person’s condition will decline regardless of how well they look after them.

    1. Isolation: After a while, a person may begin to feel lonely in their caregiving role. They may also grow tired of hearing negative opinions from family members, especially if these family members do not appreciate or recognize the time and effort caring requires. At this point, the caregiver may withdraw from friends and family.

    1. Despair: Eventually, a person may feel helpless and isolated. They can find it hard to concentrate, struggle to find joy in hobbies or interests, and avoid social interactions. The level of care they provide may also begin to drop as they spend less time on their own well-being.

Read the entire article here:  https://www.medicalnewstoday.com/articles/caregiver-burnout#symptoms

Pay attention to your signs of stress and aggravation. If you need help or think that you may need some help, give me a call and let’s have a conversation. We won’t know if I can help unless we talk to see.

Pat

865-684-8771 (leave a message, if I am unable to answer)

Caregivers: How to balance expectations and reality when your care receiver won’t get better?

Posted on October 5, 2022 by - #alzheimers, #caregiver, #dementia, #multiplesclerosis, #parkinsons, Caregiver Information

Sometimes, reality sucks! We cannot accept reality until we go through a process. Denial will be high and it is a coping mechanism for difficult emotions. We are not talking about avoidance, which causes a whole lot of other problems. We deny the truth so we can keep things the same. We have a fear of change and the unknown.

Facing reality means that we might have to change and make choices that we do not want to make. The uncomfortable feelings rise up within us and we become stuck. The inner conflict makes us miserable. Are you in denial about something?

October 5, 2022

Family caregiver denial

We can’t even get to balancing expectations versus reality until we deal with our denial.

Some clues that you may be in denial about something:

    • You wonder, “If only she (or he) would …?

    • You doubt or dismiss your feelings.

    • Hope things will improve when …

    • You begin to feel resentful.

    • You walk on eggshells, trying to avoid a blow-up or avoid talking about the problems.

    • You may be worried that you will develop dementia yourself.

    • You avoid talking about the issue.

    • You avoid thinking about the problem.

    • You promise to address the problem in the future.

    • You minimize or rationalize what is going on

    • You become numb to your feelings

Denial isn’t always a bad thing. It gives you time and space to gradually accept the change. You need time to process and figure out the next steps. It can become a problem when you continue the denial and your health unnecessarily suffers. You will have some anxiety. That is normal. It is not comfortable, but it is normal.

We might have to take an action that we do not want to take. Okay, on to expectations versus reality.

Caregivers have expectations

Expectations are what we think will happen. Reality is what actually happens. Our frustrations and problems arise when our expectations are not met. My perspective is not the same as your perspective. Our life experiences are not the same and we have different known and unknown biases.

What impacts our perspectives? Our energy levels and our physical strength. How attuned we are with our own bodies. Being hungry (you will not make good choices when you are hungry). Easy-to-read statements “Seem” to be truer, whether they are true or not. Feeling bad, sad or depressed makes everything seem harder. Having our family and friends (our support system) around helps make things easier.

What expectations do you have?

Common signs that you have expectations:

    • Anticipating a certain outcome.

    • Having and holding a vision in your mind of how things will play out.

    • Having a set idea of what you want or need to happen.

Idealized versions of life and what you want can set you up for disappointment. You may not even realize that you are not being realistic.

When life isn’t fair

Increasing your awareness of your expectations is one way to help. If you have a “should” in your thinking, be careful. Life is not fair. Why do you think it “should” be this way? Stop making comparisons. You are unique and your situation is unique. It is okay to feel disappointed. It is okay to feel all of your feelings. Remember, that you have control over how you act and react.

Learn to accept, “what is.”

Accepting “what is” and trying to make that better is a great goal to have. I know some of you are wondering what I mean. It is difficult to accept reality and “what is.” It takes hard work and practice to let things “Be, just as they are, right now.” It is hard for the “fix-it” types to adjust to not being able to fix it. We have to find our new role. We have to figure out how to help. We have to learn to accept the reality before we can figure out our options.

We don’t deny reality

I don’t deny the reality of what my clients are or will be going through. It will be hard and it will be exhausting. But everyone has the right to have the best quality of life possible for them. I never give up hope. Accepting what is or what will be, does not negate hope and trying. Being fully present” in “the moment is all we have. What you can see, feel touch, smell, and taste…right now.

What if we would set compassionate expectations? We are all going to get smacked down a time or two and that hurts. Something that we tried did not work out or it was a complete disaster. Well, hell! So, try something else.

We all have a mind or soul age and physical body age. My soul age is 35, but my physical body age is 60. I listen to my body and make adjustments for activity. Now, the little imp in me is still as active as ever. I play games, aggravate people, and have fun wherever I am. I have accepted the reality that I have to make adjustments sometimes. I am okay with that. That is really the key, isn’t it? Being okay with “that.”

Consider the conflicting emotions that you sometimes feel. Could that be what is really bothering you?

    • Happy & Sad

    • Scared & Excited

    • Confident & Doubtful

    • Love & Anger

    • Grief & Joy

    • Wanting time with your partner & Alone time

    • Believe in yourself & have a fear of failure

All of us have found ourselves in these types of emotions. It is like a push/pull situation. It sure can cause a lot of procrastination too. How can you make a decision when you have competing thoughts? They don’t have to cancel each other out. They can both be true and exist simultaneously. We do not have to choose we can accept both feelings. We have talked before about

Pat

When folks with dementia wander or become aggressive, what can caregivers do?

Posted on September 28, 2022 by - #alzheimers, #caregiver, #dementia, #multiplesclerosis, #parkinsonsdisease, Caregiver Information

Our bodies are made to move. When we sit for long periods our body hurts. Our joints and bones hurt. We simply do not feel good. Now, imagine that you have a disorder or chronic health condition that makes movement more difficult or you can’t remember to exercise. Your body still needs movement to relieve pain and relieve excess energy.

September 28, 2022

Move more, hurt less. Move more, rest better. Movement and exercise for the care receiver will make the care giver’s life easier.

Regular Movement and Exercise Can Decrease Agitation and Aggression

Is your loved one restless? Do they wander? Are they withdrawn? Hurting? Regular exercise and movement will help decrease these issues in people with dementia.  Do something every day. We often think about things to keep the mind busy, but we sometimes forget about the body. It takes both to make an impact on their well-being.

Those dealing with Parkinson’s disease know that movement and breathing exercises help them to maintain strength and independence longer. They seem to be more open to exercise classes and doing workouts at home. Why? Probably, because they have all of their mental faculties, it is their body that is failing them and they want to be as independent as possible.

Does your loved one with dementia wander?

Those dealing with a dementia, such as Alzheimer’s disease, are experiencing brain failure. They become less and less aware of what their body needs, but they need to have something to do.  They forget that their body needs movement and exercise. Over time, they lose the ability to reason through the many steps it takes to exercise. These folks need reminders and workout buddies to help them achieve their goals. Many times, they can mimic what they see. Family caregivers can workout with them. 

What they can do safely is of great importance. As with any exercise routine, a physician needs to be consulted. Maybe, a visit to physical therapy and/or occupational therapy is a good idea. PT’s and OT’s can help with an exercise program that can be done at home. Any exercise needs to be done appropriately. Form matters. Consistency matters. Never giving up matters.

Rock steady boxing has great results for folks that are dealing with Parkinson’s. Deep breathing exercises and vocal exercises are important too. Walking is good for everyone. Being outside is good for everyone. Playing in the dirt (aka, gardening) is good for almost everyone.  So, what, if you have to modify things? Being adaptable is a plus.  

Why we need to get tired

Walking, weightlifting and dancing are great exercises for folks that are dealing with any type of dementia. The body needs to work in order to get tired. If we don’t get tired, we get restless. We can’t sleep and we get a little testy. Now, imagine that your brain is failing and you can’t reason out these things. You only know how you feel at this moment in time. You have to get your “willies” out somehow. You wander, you follow people around, and you ask the same question over and over.

Don’t forget about brain use activities. They are important too. Coloring, making something, building something, and doing a puzzle are all important, too. It does not have to be perfect. 

I know that some of you caregivers are thinking, “I just want to get X, Y, and Z done.” Let your loved one help, give them a job. Be fully present and engaged with them. It won’t take any more time and it may even take less time because you won’t have all of the interruptions. People with dementia often want to help or contribute in some way. This is another area where daily routines are very beneficial. Set a time to go outside for a walk. Set a time for working out, doing brain work and help with folding towels. Yes, even if they have already been folded. Mess them up and give them to your loved one so they can help. 

People before things.

Help your loved one to take care of their exercise needs. Develop your routine and stick to it. Put yourself in “time-out,” when needed. Think outside of the box. Who can exercise with them for about 30 minutes every day? Total visit time would probably be 1 & ½ to 2 hours. I bet you can find other family members or friends that can do that visit.  You have to tell folks what you need help with.

Those that have requested to stay at home (age in place), for as long as it is safe for all…will need to be fit, and have some strength and endurance. When they become “dead weight,” or can no longer toilet themselves, they will have to begin the transition to assisted living and nursing homes. It is possible to keep them at home with 24/7 in-home care.

Strength and balance exercises are very important.

The health benefits of exercise include:

    • Improved mood

    • Better sleep

    • Reduced likelihood of constipation

    • Reduce or prevent wandering

    • Reduced aggressive behavior

    • Reduced risk of falls

    • Increased maintenance of motor skills

    • Improving heart health

    • Improved strength

    • Improved balance

You may start with 5 minutes a day and increase a minute or two every week.

Dancing counts. Playing golf counts. Running errands counts. Riding bicycles counts. Walking on a treadmill counts. Yoga or Tai chi counts. Vacuuming and folding laundry counts.

For the mind:

    • Do a puzzle

    • Play a board game (Connect Four, Chutes & Ladders, Checkers)

    • Read a book aloud to them

    • Play a card game

  • Reminisce (ask them about childhood, hobbies, work life)

Pat

Behavior in a person with a dementia such as Alzheimer’s disease ALWAYS has a reason

Posted on September 22, 2022 by - #alzheimers, #caregiver, #dementia, #parkinsons, Caregiver Information

Why is he doing this? Why is she acting this way? We always wonder why they are acting out or being disruptive, but we don’t always think about what is really going on. What is really going on is that something is bothering them and they cannot tell you what it is. You have to put on your detective hat. I promise you that they are not doing this on purpose.

September 21, 2022

When people with dementia can’t tell you what is wrong

It is hard to deal with a person that cannot tell you that they are hurting, uncomfortable, or scared. They do things that don’t make any sense to us. But, remember you are in dementia land. They have less and less control over their emotions.

Aggression in dementia can become scary and abusive. Aggression can become physical. It may also come out as cursing, spitting, or being verbally abusive to the care partner or helper. The aggressive behavior is thought to be the way that the person with dementia  shows anger, fear or frustration.

Overboard reactions include screaming, shouting, making crazy accusations, and becoming agitated or very stubborn. They may also have uncontrolled laughing or crying. Possibly due to misunderstandings/miscommunications or even an underlying illness.

Change in sexual behaviors. The person with dementia no longer knows what to do with their sexual desire or how to address it appropriately. There may be a diminished interest in sex or there may be an increased interest in sex. They may remove their clothes, make sexual advances toward others, fondle themselves in public, or mistake another person for their partner.

Repetitive behaviors include asking the same question over and over and over, pacing, undoing something that you have just done, or word repeating. Give them something to do.

Wandering or leaving. Maybe they are “trying to go home,” or “they are going to work.” You may have to hide “exit cues” or “trigger items,” such as keys, shoes, jackets, purses, or hats. Try to engage with talking or reminiscing while distracting them from leaving.

Sleep disruptions. Dementia affects sleep patterns. Have the doctor rule out other possible causes. Keep them active and on a schedule during the day. They need physical exercise (walking 30 -45 minutes each day). Is the sleeping environment dark, and quiet? Is the temperature in the bedroom comfortable? Make sure they have sunlight during the day and even if they can’t go outside a lot, they can see the sunlight through the windows.

Delusions and Hallucinations: False beliefs, paranoia, and hallucinations may occur. Sometimes, the hallucinations are pleasant and sometimes they are not. Strong emotional memories from their past may recur. They will feel as though they are experiencing them in real time, all over again. If they are not bothered by the hallucination, then leave it be. If they are distressed, talk with the doctor to rule out other causes or to change/update medications. You can acknowledge their experience with a matter-of-fact tone without agreeing or disagreeing with them. You could say something like, “That is interesting.”, “I don’t see that.”, or acknowledge what they have said and move on to another topic.

I saw this article from Better Health and would like to share it with you.

https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/dementia-behaviour-changes

Sleeping problems in dementia

Problems with sleeping are common for people with dementia. Some people sleep during the day and are awake and restless at night. Some are no longer able to tell the difference between night and day, while others are simply not as active as they used to be and so need less sleep.

Problems with sleeping or late evening agitation are often a stage in dementia that eventually passes. Many people with dementia sleep more during the later stages of the illness.

Sleep problems are among the most difficult dementia symptoms for carers. Families and carers must be able to get adequate sleep themselves. Plan regular periods of rest and regular breaks for yourself, as well as for the person with dementia.

Medical possible causes of sleeping problems in dementia

Sleeping problems may be caused by physiological or medical causes including:

    • brain damage (caused by the dementia) that affects the ‘biological clock’ in the brain that directs our sleep patterns

    • illness such as angina, congestive heart failure, diabetes or ulcers

    • pain caused by conditions such as arthritis

    • urinary tract infections that cause a frequent need to urinate

    • leg crampsor ‘restless legs’, which can indicate a metabolic problem

    • depressionthat causes early morning wakening and an inability to get back to sleep

    • side effects of medication, such as antidepressants and diuretics

    • snoring and sleep apnoea

    • ageing that causes sleep patterns to change so that some people need more sleep and some need less.

Things you can try include:

    • Discuss with the doctor the possibility of stopping or changing diuretic medication (which makes a person urinate), because this may be contributing to the problem.

    • Arrange a medical check-up to identify and treat physical symptoms.

    • Treat pain with an analgesic (pain-relieving medication) at bedtime if the doctor agrees.

    • Discuss with the doctor whether sedatives may be contributing to the problem.

    • Ask the doctor whether an assessment for depression may be necessary.

    • Ask the doctor about possible side effects of medication.

    • In some situations, it may be necessary to consider discussing with the doctor the appropriateness of either using tranquillising medication or sleeping medication. Sleeping medication may be helpful in the short term to establish a better sleep cycle, but both types of medication can have negative effects, such as increased confusion.

Environmental causes of sleeping problems in dementia

The environment of the person with dementia can cause sleeping problems in a number of ways including:

    • The bedroom may be too hot or too cold.

    • Poor lighting may cause the person to become disoriented.

    • The person may not be able to find the bathroom.

    • Changes in the environment, such as moving to a new home or having to be hospitalised, can cause disorientation and confusion.

Things you can try include:

    • Keep the environment as consistent as possible.

    • Check whether the person is too hot or cold when they wake up, because dementia can affect the body’s internal thermostat.

    • Provide adequate lighting if shadows, glare or poor lighting are contributing to agitation and hallucinations.

    • Move the mirror in the bedroom if the person becomes confused when they do not recognise their own reflection or the reflection of others in the room.

    • Install night-lights that might help cut down on confusion at night and may help the person to find the bathroom.

    • Place a commode next to the bed if finding the bathroom is a problem.

    • Make sure the bed and bedroom are comfortable and familiar, because familiar objects may help to orient the person.

    • Avoid having daytime clothing in view at night, because this may make the person think it is time to get up.

    • Make sure that the person is getting enough exercise – try taking one or two walks each day.

Other causes of sleeping problems in dementia

Other causes of sleeping problems may include:

    • going to bed too early

    • sleeping too much during the day

    • overtiredness, causing tenseness and inability to fall asleep

    • not enough exercise, so the person does not feel tired

    • too much caffeine or alcohol

    • feeling hungry

    • agitation following an upsetting situation

    • disturbing dreams.

Managing sleeping problems with food and drink

Some suggestions include:

    • Cut down on caffeine (coffee, cola, tea, chocolate) during the day and cut them out altogether after 5 pm.

    • Cut down on alcohol and discuss the effects of alcohol and medication with the doctor.

    • If you think the person may be hungry at night, try a light snack just before bed or when they wake up during the night.

    • Herbal teas and warm milk may be helpful.

Managing sleeping problems through daily routine

Some suggestions include:

    • Try not to do any tasks in the late afternoon that may be upsetting to the person.

    • If the person refuses to go to bed, try offering alternatives such as sleeping on the sofa.

    • In some situations, it may be necessary to consider discussing the appropriateness of either using sedative medication or sleeping medication with the doctor. If the person wanders at night, consider allowing this, but check that the house is safe.

    • Try a back rub before bed or during a wakeful period.

    • Try a radio beside the bed that softly plays music.

    • Gently remind the person that it is the evening and time for sleep.

Hoarding in dementia

FYI – People with dementia may often appear driven to search for something that they believe is missing and to hoard things for safekeeping.

Some causes of hoarding behaviours include:

    • isolation – when a person with dementia is left alone or feels neglected, they may focus completely on themselves. The need to hoard is a common response

    • memories of the past – events in the present can trigger memories of the past, such as living with brothers and sisters who took their things, or living through the Depression or a war with a young family to feed

    • loss – people with dementia continually lose parts of their lives. Losing friends, family, a meaningful role in life, their income and a reliable memory can increase a person’s need to hoard

    • fear – a fear of being robbed is another common experience. The person may hide something precious, forget where it has been hidden and then blame someone for stealing it.

Managing hoarding

Things that you can do to help manage hoarding behaviour in dementia include:

    • Learn the person’s usual hiding places and check these first for missing items.

    • Provide a drawer full of odds and ends for the person to sort out, as this can satisfy the need to be busy.

    • Make sure the person can find their way about – an inability to recognise the environment may be adding to the problem of hoarding.

Repetitive behaviour in dementia

People with dementia may say or ask things repeatedly. They may also become very clinging and shadow the person caring for them, even following them to the toilet. These behaviours can be very upsetting and irritating for families and carers.

Managing repetitive behaviour

Things that you can do to help manage repetitive behaviour in dementia include:

    • If an explanation doesn’t help, distraction sometimes works. A walk, food or doing a favourite activity might help.

    • It may help to acknowledge the feeling expressed. For example, ‘What am I doing today?’ may mean that the person is feeling lost and uncertain, and a response to this feeling might help.

    • Do not remind the person that they have already asked the question.

    • Repetitive movements may be reduced by giving the person something else to do with their hands, such as a soft ball to squeeze or clothes to fold.

Wandering in dementia

Wandering is quite common among people with dementia and can be very worrying for those concerned for their safety and wellbeing. The person’s failing memory and declining ability to communicate may make it impossible for them to remember or explain the reason they wandered.

FYI – Develop an action plan for when a person with dementia wanders, such as noting the clothing they were wearing, and contacting neighbours and the police.

Reasons that a person with dementia might wander include:

    • changed environment

    • loss of memory

    • excess energy

    • searching for the past

    • expressing boredom

    • confusing night with day

    • continuing a long-held habit

    • agitation

    • discomfort or pain

    • believing they have a job to perform.

Managing wandering

Things that you can do to help manage wandering in dementia include:

    • Get a physical check-up for the person to help identify whether illness, pain or discomfort has triggered the wandering.

    • Discuss the side effects of medication with the doctor – try to avoid medication that may increase confusion, and cause drowsiness and possibly incontinence.

    • Consider the psychological causes of wandering to try to determine if the person is anxious, depressed or frightened.

    • Make sure that the person carries some form of identification that includes their current address, if travelling

    • Use identification cards available from Alzheimer’s Australia.

Sundowning in dementia

People with dementia may become more confused, restless or insecure late in the afternoon or early evening. This is known as sundowning and these behaviour changes can become worse after a move or a change in routine.

The person with dementia may become more demanding, restless, upset, suspicious, disoriented and even see, hear or believe things that aren’t real, especially at night. Attention span and concentration can become even more limited. Some people may become more impulsive, responding to their own ideas of reality, and this may place them at risk.

Visit the doctor for a check-up and a review of medication. There are a number of physical and environmental changes you can make to restrict stimulating activities to the morning and promote relaxation in the afternoon and evening.

When you are dealing with all kinds of behaviors, you will need a way to calm your own frustration. Sometimes, you need to walk away and take a few minutes to compose your own thoughts and settle down. Is what they are doing hazardous or frustrating and aggravating? Unless it is dangerous or hazardous, leave them alone.

Know your own warning signs of frustration:

    • Shortness of breath

    • Knot in the throat

    • Stomach cramps

    • Chest pains

    • Headache

    • Compulsive eating

    • Excessive alcohol consumption

    • Increased smoking

    • Lack of patience

    • Desire to strike out

If you don’t deal with your own frustrations, anger and resentment are not far behind.

Pat