Category: #parkinsons

Can you have a difficult conversation and be respectful?

Posted on March 15, 2023 by Pat - #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 Pat - #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 Pat - #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

Getting “Life” Things in Order: You want it. You need it. But, you can’t seem to do it…why?

Posted on January 12, 2023 by Pat - #alzherimers, #caregiver, #caregivers, #dementia, #information, #parkinsons

Maybe, it is because you don’t know your “why.” Your own personal “why” is what motivates you. You can say “I need to…” or “I should …” do X,Y, and Z. Yet, it never gets done. Is it because you don’t know where to start? Is it because you are not sure what to do or what is important? Is it because you don’t really see the benefit of doing “it?” January 11, 2023 Simon Sinek, says to always start with your “WHY?” Why is it important? How will it help you or your loved one? How will it improve your life? How will it decrease your stress? Why do you do what you do?

The Stress-Buster Binder is for you, if you want an easy to use format.

Will a fill-in-the-blank PDF help you?

Would a fill-in-the-blank notebook be of benefit to you? Would a fillable pdf document be of benefit to you? For some of you, it is what you have been looking for. For others, it is something you didn’t know you needed but will be of tremendous help to you. What is in the world could it be? My shameless plug for my Stressbuster, Time Saving Important Documents Binder.

How will it help?

It is organized by topic. The pages are protected by sheet protectors, you fill it out and have the information at your fingertips. You know how it is, you go to a new doctor and you have to fill out a complete medical history. You cannot remember everything nor can you remember dates. With the grab-and-go binder, you fill it out ONCE and use the information forever. That decreases your stress level when you are asked for medical information that you don’t recall.

Topics Included:

A durable power of attorney Financial

Power of attorney for Health

HIPAA

Health Care Proxy

Financial Affairs

End-of-life decisions

Advance directive

Will

Things you may also need, that you didn’t-know you would need

Medical History

Online Accounts – passwords and security questions

And more…

Pre-printed Binder Kit (pages are in sheet protectors) Checklist

You also receive clean sheets to make copies. This is great for updating the records and for when you need to use medications given check-off sheets. The complete binder kit is $249.00 and can be mailed anywhere in the contiguous 48 states for $17.00, as of this date 10/25/2023. Prices for printing and mailing may be updated as those prices increase. Yes, I am telling you to get the binder before the price increases.

Computer version Checklist

Fillable PDF file for family use $129.00 Fillable PDF file for single use $69.00 Pat

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

Posted on December 14, 2022 by Pat - #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

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

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

Posted on December 1, 2022 by Pat - #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

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

Posted on October 20, 2022 by Pat - #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 Pat - #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 Pat - #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

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

Posted on September 22, 2022 by Pat - #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.

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

If it isn’t visible, it isn’t happening and other bull$%^!

Posted on March 9, 2022 by Pat - #alzherimers, #caregiver, #dementia, #multiplesclerosis, #parkinsons

Invisible Illness: how do you get others to “see” what is happening to you on the inside?

If it hasn’t happened to them, they have no idea what is going on. But, a lot of them have an opinion about how you are; how you should or should not feel. Even if they have experienced it, it may not be the same as how you experience it.

March 9, 2022

We are all different. Our life experiences are different. Our pain tolerance is different. Our bodies are different. Sure, they are comparable, but they are not exact. We metabolize foods and medications differently or not at all. So many variables affect our immune system. So many things affect the inflammation inside of our bodies.

Biological processes are variable. Cultural traits are different. Genetic make-ups are different. We all have special qualities. We have our own body type.

When did healthy become based on appearance?

You can be really thin and be very unhealthy. You can be overweight and be really healthy. People of all shapes, sizes, weights, can either be healthy or unhealthy. You are in your body 24/7 how do you feel and what is going on with you? Is your body nourished with the foods that it needs? I am not talking about stress eating or emotional behaviors, just plain old giving your body what it needs to function at its highest level. Food, hydration, rest, activity and sleep are all important for a healthy body.

What happens when a body has an autoimmune disorder? An autoimmune disorder is a condition when your own immune system mistakenly attacks your body. It destroys healthy body tissue by mistake.

What happens inside the body of one with an autoimmune disorder

How would you think a person might feel while all of this is going on inside their body? They have pain, tiredness, fatigue, nausea, rashes, headaches, dizziness and more depending on what disease they have. They feel these things, All-of-the-time, because they have these things all-of-the-time. It would be rare for them to not to feel bad because their body is under attack.

My hope is that these folks are working with their doctors and other health care providers to find out what works best for them and their needs. To have the best quality of life possible. I only want folks to take the medications that they need. To use other means to help manage their conditions. Nutrition, hydration, strengthening, mindfulness-based stress reduction meditation, stretching, rest and activity. It takes all of these things plus medications to improve quality of life.

I get it. It is hard to do all of these things, work full-time, have a family life, friends, etc. Don’t look at it as giving things up. Look at it as caring for yourself to improve your energy and strength so you can spend more time with those that you love and do the things that you enjoy doing. Your friends and family can do all of those things with you, except, take your medication. It is probably easier to have a work-out buddy to keep you engaged and committed to the routine. That is the key anyway. It will become a routine and then a habit. Once it is a habit, you no longer have to use a lot of brain energy to figure out all the particulars.

Chronic disease is hard on everyone

Living with a chronic disease is hard. It is hard on the person that has it and it is hard on those that love them. It sucks to make plans and then they get cancelled because of a flare-up or a bad day. Once or twice, you can usually get over it, but more than that, it begins taking a toll on all involved.

No body wants to make plans because they get cancelled. A wall begins to build up. Everybody is pissed and nobody is talking to nobody about the elephant in the room. Maybe, it is because you don’t want each other to feel bad? Maybe, it’s because, you know that sometimes shit happens and you have to adjust.

It is great to realize all of that. You must also talk with each other about it. How you see things, how it makes you feel and what you want. You aren’t really mad at each other; you are mad at the situation. If you are mad at each other, I suggest you go and get counseling now. It does not matter if it is a partner relationship or a friend relationship, you do need help in navigating these issues.

Non-medical messy side of chronic disease

Too often, only the medical side is addressed. No body wants to deal with the messy part of a chronic illness. The parts that leave families strained and sometimes broken. You have to deal with the messy parts. Once you do and you have a workable plan, it can make all the difference in your relationships. It is not easy, but the results are worth it. In my business, I deal with the medical side and most parts of the messy side. If you need a therapist, I will recommend that.

Learning and understanding what is truly going on with a person that has a chronic illness is eye opening. Being able to modify plans or activities will improve relationships. You want them at their best, so what are you going to do to help them get to their best? Can you relate to what they are experiencing?

Pain is subjective. We all have different tolerances and what may be a 10 (the absolute worst pain you have ever had) may be a 3 or 4 (mild to moderate) to me. I am sure you have heard people state that they have had a kidney stone and it was the worst pain possible. It has to be worse than having a baby. Why? Because you “say so?” Because the pain you experienced was the worst pain in your life does not mean that it was worse than the pain of childbirth. Some of you mom’s that have had both can speak to this. I have heard a few moms say that childbirth pain was the worst and I have heard a few moms say that the kidney stone pain was worse.

Chase the Rabbit

Here comes a rabbit chasing. No one needs to suffer from uncontrolled pain. I understand that all pain cannot be eliminated and that is not really the goal of treating chronic pain. We treat chronic pain to help those with that type of pain to live the best quality of life possible. An active life. A fulfilling life. Managing the pain to a tolerable level is the goal. Treating chronic pain takes a multi-prong approach. Medication alone will not provide the relief needed. Strength training is one way to reduce pain. Running or walking is another way to reduce pain. Eating for nutritional needs, is yet, another way to reduce pain. Hydrating every day is another way to reduce the pain. It is all connected. Yes, I know there are many different types of pain. Thus, the multi-prong approach. I don’t believe in cookie cutter approaches to treating pain. People are different, their pain is different, their tolerances are different, medications work for some, but do not work for others. It is very easy to get frustrated when every thing that you try does not work. I use a combination approach with my clients and that seems to work better for pain relief and pain control. It will take effort, some fine tuning to the plans to get the right combination that works for you, but it will be worth it. Rabbit chasing over, for now.

After a while, folks just give up. The one with the chronic illness and the one without the chronic illness, just give up. If your loved one has a chronic illness, help them to become they best they can be. Encourage them to take back control of their life. Help them to focus on the solutions and not the freaking problems. What can they do? What can they improve? What will it take to help them? You can’t make them, but you can encourage them, believe in them and help them when they ask. You can’t do it for them and they do get to decide what they will or won’t do.

To the one without the chronic illness, you need to take a look at your beliefs about the one that has the chronic illness. This may get ugly. Do you understand what they go through every day? Do you understand that they feel like they let everybody down? Do you understand your part in not being able to go and do? Are you becoming an enabler to their lack of action or lack of participating in activities? There are other things, but you get the idea.

Don’t give up! There are things to try. There are things that will make your life easier. Get ready to look forward to activities again. Yes, you have to think about getting ready. You have to reason it out in your mind. The negatives will come rushing at you. All of the “you have tried this and it didn’t work,” thoughts will flood your mind. It may not have worked then, but it is possible that it will work now by doing “x,y and z.” If you are not open to the possibility that things can get better and actually be better, then they won’t.

Who do you need on your healthcare team?

Who do you need to add to your health care team? Me? A sports psychologist? A nutritionist? A therapist/psychologist? A trainer? A workout partner? A deal with my anger and other emotions therapist?

An autoimmune disorder may cause destruction of body tissue, may cause an abnormal growth of an organ, or even cause changes in organ function. The areas most often targeted are blood vessels, connective tissue, joints, muscles, your skin, red blood cells, your thyroid or your pancreas and other endocrine glands.

Very few of these disorders can be seen. It is all happening inside the body.

Here are some of the most notable autoimmune disorders:

Next time, we will touch on other non-visible health conditions such as migraine, depression, heart disease, etc.

- Rheumatoid arthritis

- Sjögren syndrome

- Systemic lupus erythematosus

- Type I diabetes

- Addison disease

- Celiac disease – sprue (gluten-sensitive enteropathy)

- Dermatomyositis (muscle weakness, swelling, tenderness)

- Graves’ disease

- Hashimoto thyroiditis

- Multiple sclerosis

- Myasthenia gravis

- Pernicious anemia

- Reactive arthritis (happens after in infection)

- Crohn’s disease

- Lyme disease

- Narcolepsy (looks more and more like an autoimmune disorder)

- Psoriatic arthritis

- Raynaud’s syndrome

Ulcerative colitis

Pat

Which caregiver role fits you, right now?

Posted on January 6, 2022 by Pat - #alzherimers, #caregiver, #parkinsons, Caregiver Information

January 5, 2022

- Hands-on caregiver – you are physically there and you help with their daily needs (i.e., dressing, bathing, toileting, brushing their teeth, meal preparation and feeding).

- Companion care – they can do most things on their own and you are there to provide company, keep them engaged with conversation (emotional support) and make some meals as well as medication reminders and light housekeeping. Maybe, take them to an appointment or on errands.

- Long-distance caregiving – you probably live an hour or more away, you may be helping with money management, and you may be in charge of making appointments, finding in-home care assistance, and planning for emergencies.

- Accidental caregiver – Oh crap, I did not see this coming, right now. I know that I have to help, but I am not sure what I am good at? I will muddle through.

- Reluctant caregiver – you may find yourself responsible for someone who has abused you in the past or that you do not get along with. This one is very difficult and it may be best to find help immediately and place yourself in the long-distance caregiving camp.

- A Swoop-in, create havoc and swoop on out caregiver – these folks need an ass whipping. They come in every once-in-a-while, state and do whatever they feel like, without regards to the care receiver or the other care givers and get things stirred up and then they leave. Most likely, these folks are just waiting for the care receiver to die so they will not have to be bothered.

- Provider of support to the caregiver – Physically and emotionally help the caregiver to excel at being a caregiver. You help the caregiver with the chores or things that need to be taken care of at their house or the house of the care receiver. (Laundry, house cleaning, cooking a meal or two, mowing the lawn, cleaning the gutters, running errands, etc.)

Maybe, you don’t identify as a caregiver, yet

Some of you have never identified as a caregiver, it is just something that you do. You are helping your mom. You are helping your dad. You are helping your wife. You are helping your husband. You have never viewed it as caregiving, they need help and I will help them. It is that simple.

You never even give it a second thought. That is what family does for each other. I get it, I have been there too. It is what good friends do for each other too. While we don’t identify with the word “caregiver,” that is what we are. A lot of us are the Lone Ranger. We are fine, for a while. We can manage our lives, our jobs, our homes and all of our loved one’s stuff, for a while. Usually, it is about 18 months in and we are stressed out, frustrated, tired and overwhelmed. We look up one day, and wonder how we got here? It happened so slowly and it wasn’t too bad or too hard. But, now, it takes a lot more time and effort to help our loved one.

Our love for them has not changed. Our goals for them have not changed. Our goals for ourselves have not changed. What has changed is our own health. We are tired and we just cannot get rested. Our eating habits are worse, we have gained weight and those stress headaches and lower back pain keep us off of our game. Work is work. It hasn’t slowed down and I am expected to perform at my best every day. I can’t concentrate as well as I used to. I find myself worrying more about my loved one and I can’t remember the last time I had some free time.

Tools to help you in your family caregiving role

What would help you the most in the next three months?

Do you need an easy to use, fill-in-the-blank essential information binder?

The three things it will do for you –

- Decrease your stress level

- Empower you to be more in control, to make better decisions

- Information will be easily accessed when needed

What is included in this Stress Buster, Time Saver, Information Binder:

- Banking Information (including retirement information)

- Bills – list of and when due

- Doctors and other Health care providers list

- Documents needed

- HIPAA release form

- Home information (home, vehicles, rental property)

- Income to be received (from Social Security, Retirement, Renters, etc.)

- Legal Documents needed

- Medical bills and EOB’s (explanation of benefits, with tips and info)

- Medical history (incl. diagnoses, surgeries, devices used, etc.)

- Medicare and Medicare Advantage Plan (how to check on EOB or MSN for coverages and benefits)

- Medications (list of medications, administration check-off list, incl. over-the-counter medications0

- Online accounts (User names, Passwords, Answers to security questions)

- Tasks to be done sheets

Available as a Binder Kit (with pages in sheet protectors, highlighters, ink pens and a mechanical pencil)

As a downloadable, fillable PDF file for Single use or Family Use

Use this link for more information and to Order product.

Binder Kit

The next thing that may help you or your loved one is to KNOW whether the medications you are taking are working for you, against you or doing nothing for you. It is a genetic test for medications. You do it once and use the information for the rest of your life. It is a cheek swab. Have your own doctor, physician’s assistant or nurse practitioner order the test (they may use a prescription pad), get it to me and we will get you started.

For more information and a list of medications that have a genetic impact, click on this link

Right Med® Test Kit

Scroll down to blue bar that states Right Med Mediation List and click on that link to see the list of medications.

Services offered are listed under the Options tab. Click on link below to access options page.

Options

Option 1 is for an overview and is available to all.

Options 2 and 3 are researched, doable plans of action using best practices and your individual needs as guidelines. You will be heard and understood. These require a conversation and acceptance as they are customized and detailed.

** I won’t waste my time or your money, if these options are not for you. **

Options 2 and 3 are customized for the individual with researching, troubleshooting and support plans for the individual and the family.

The difference in Option 2 and Option 3 – Option 3 includes follow-up for three months instead of one month. With Option 3, updating the support plan is included. I am your guide and will help you to keep moving forward.

My goal with Option 2 or Option 3 is to help you have an understanding of your options, what you may be facing in the future and how to be as prepared as possible. To have the information that you will need to make decisions and choose the best options for you and your family.

Who do you know that could benefit from any of these products or services?

I need your help to get the word out about these products and services. I want to help those that need these things. If I can make their journey less stressful, that is what I want to do. Please pass along this information to those you know. Thank you for your time and effort.

All products and services are available throughout the U.S.

Pat

Will you ever be okay with being wrong?

Posted on December 29, 2021 by Pat - #alzherimers, #caregiver, #parkinsons, making decisions

How many better decisions could you make IF, you felt it was okay to be wrong?

December 29, 2021

Okay to be wrong? Nope, I can’t even think it, much less say it out loud. For those of us that are “recovering” perfectionists (Remember, I am a work in progress.), still have a hard time believing that being wrong is okay.

Trust me, I know that making a mistake can be deadly. That was drilled into us at pharmacy school. But, not every mistake will be deadly. It may cause some harm or no harm. None of us want to hurt another person, we are here to help you to get better. To thrive. My yearly average was pretty good. Some years, I made no mistakes and some years, I made one. It sucks to have to write-up the incident report. Thankfully, mine was never the wrong medication. Wrong strength, wrong dosage form (tablet instead of capsule), incorrect directions, wrong doctor name, wrong original date, wrong quantity, all count as errors or mis fills. Every mistake and every incident gets written-up and sent in to corporate.

We hate making mistakes

I hate making mistakes! I get angry at myself. I replay the incident over and over in my mind. Sometimes, I can figure out what happened and sometimes, I cannot. If it is a procedural error, such as disruption with a phone call or a customer at the window, then we can put things into place to mitigate those disruptions. If it is a look and mis-see error, usually you cannot fix that. Once you have “seen” drug, names and directions, you tend to see the same thing every time that you look at the prescription and the label. That is why it is best if a technician types in the prescription and the pharmacist checks it with fresh eyes. You always want at least two sets of eyes on it. I did not really mean to go this deep on this.

What did you learn?

The point is, if you can identify a “fix” or a better way to do it next time, then you have learned something and most likely you will not make that same mistake again. You have learned and moved forward.

Isn’t that what is best for all of us? But, no, we keep beating ourselves up for past mistakes and errors. If we do that long enough, we will never make another decision that may impact someone else.

What if we could, be a little kinder to ourselves and allow ourselves to learn from what went wrong? Learn from what did not work? We catastrophize, we imagine the worst possible outcome of an action or event. For example, “If I flunk this test, I will fail this course, I won’t graduate and I will be a failure in life.” Another one is, “If I don’t recover fully in the first two weeks, after surgery, then I will never get better and I will be in pain or disabled the rest of my life.

97% of the time, none of that is true. You keep studying and doing better in your class. If you fail, you will have to re-take it, and then you will graduate. Healing takes time and you do get better as time goes on. You do have to do your part with rehab, moving and taking your medication as directed. Your pain will lessen and you will be able to get back to your activities.

Catastrophize

I guess that we all need to catastrophize occasionally. Maybe, it keeps us on our toes? If you are going to catastrophize, then you have to go all in with your thinking. Ok, the worst has happened. Now what? Keep going.

What if we don’t catastrophize? What if we stop the automatic negative thoughts that come to us? What if the negative thinking is hurting you more than it is keeping you safe? If you always look for the bad or the worst, you will find it! The opposite is also true. If you look for the possibilities or the good, you will find that too. Stress and anxiety really does play a part in how we think about things.

You are right, sometimes things will get bad. But, not everything gets bad. We don’t deny reality, we do our best to accept it and provide the best quality of life possible. I will never give up planning and hoping for the best. I have learned that it is okay to make a mistake. It is okay to make adjustments. It is even okay, to try another approach. Trying is never failing. F.A.I.L. – First Attempt In Learning

Fear of failure, keeps us stuck

It is our own screwed up mindset that keeps us afraid and that fear of failure rears its ugly head. Our self-worth gets tied up in to how well we perform. Think of a baby that is learning to walk. How many times do they fall? How many times do we tell them, “You can do it?” Or “try again?” They are learning something new and it is going to take a little time for them to learn. What would happen if the first time that they tried to walk and fell, they just sat there and cried and never tried to walk again? We would take them to their doctor to find out what was going on. We would think, “Ok, they fell, but they can try again and again and soon they will be able to walk.” We will even help them to get up and move those legs.

Have you ever been pushed to explain your reasoning? Even when someone is curious and really just wants to know, we get all mad and start defending our position rather than explaining. That conversation never ends well, does it? What if we can be curious and wonder about our choices. What options have we thought of? What options could be found if we talked with others? Don’t guess. Don’t assume, ask questions when you do not understand. I like to use a round table discussion where everyone is helping to brainstorm. Everyone throws out their ideas and nothing is ruled out until after the brainstorming session has ended.

None of us is very comfortable being critiqued. If you work for a company, then you will have a yearly evaluation. Sometimes, they are not pleasant. It is not that they are bad or really even negative, just some things that we need to improve. When we realize that we are receiving feedback to help us to become better and more efficient, we tend to accept the information easier than if we think we have done something wrong. Don’t let your automatic negative thoughts run away with you. Take a minute or two and assess the situation. The people around you want you to succeed. If they don’t, then find new people to be around.

I guess we did chase a rabbit or two during this blog.

Stop trying to be perfect

Let yourself be open to learning new things. If you are wrong, admit that you are wrong. I promise you; it won’t kill you to admit such a thing. I have done it myself and it did not kill me. In fact, when I stopped trying to be perfect, most decisions became easier to make. They turned out quite well, too. I am smart enough to know when I don’t know. I find others that are smarter than me and I ask questions. I learn new things and new ways of doing things.

When you are right, don’t be an ass. Tomorrow, you could be wrong. Do you want to be right or do you want to be happy? Decide if you want to be a leader or a follower. A leader will take charge and make a decision after considering the current options. A leader knows when they have made a mistake. A leader will say, “I have messed up. This did not work out as I had hoped. Let’s try this.” A leader will say, “We made a good choice and things are working out nicely. Thank you all for your input.” When we admit our mistakes, we make it easier for others to admit theirs. Being wrong does not mean you are bad. Being wrong does not mean you should feel shame. Being wrong is just a thing that happens sometimes.

Failure is an event, not a person

If you try to avoid mistakes, maybe you are not open to learning new things? Making mistakes does not make us a failure. Failure is an event and never a person. I wanted my techs to check me. I always told them that I had rather they be wrong than me be wrong. We need to challenge things that we think are wrong. They may or may not be wrong, but we need to find out. Question when you do not understand. Something new takes two, three or five times to hear before being understood.

Admit your mistakes. Look at the new skill you will learn. Resilience is what you learn when you get back up and try again. Resilience is one key to succeeding. You will not like making a mistake nor should you, but you do need to accept that you have made a mistake.

“My bad”

When you make a mistake what will you do? Will you pretend that it did not happen? Will you point the finger at someone else? Or will you take responsibility for your mistake and learn from it? Will you forgive yourself and move forward? If someone else makes a mistake, will you empathize with them instead of blaming them?

Besides, when you admit your own mistake … no one can ever hold it over you.

Pat

Who are you? Who are you helping?

Posted on December 23, 2021 by Pat - #alzherimers, #caregiver, #ms, #parkinsons

I am the daughter of a dad with Alzheimer’s.

I am the son of a mom with Parkinson’s.

I am the wife of a man that has had a stroke.

I am the husband of a woman that has breast cancer.

I am the partner of one that has complications of diabetes.

December 22, 2021

You find yourself helping your mom with grocery shopping, taking her to the doctor, and having her hair done. You find yourself helping your dad by mowing the lawn, cleaning the gutters, and cleaning the house.

Maybe, you are doing their errands, laundry or going to the bank for them.

No big deal, it is just what you do for family. They took care of you when you were younger and now it is your turn to help them.

Health issues arise. Both physical and mental. They are no longer the independent, self-sufficient person that they once were. A part of you thinks that this is temporary, but the other part of you knows that this is the beginning of a decline in someone that you love.

We talk about parents and their needs, but it could be a spouse or partner. A life-altering tragedy has occurred and now you are helping them. You still have the same responsibilities you had before with your own job and your own health needs. Don’t forget about your civic responsibilities, church activities or friendships.

Caregiving needs and duties change over time

Over time, their needs take up more time and effort. Your free time becomes less and less. There will be times that you cannot take care of your own things very well as you are helping them with their things. It happened slowly and you didn’t really notice it until something like an unpaid bill smacks you in the face. You beat yourself up for missing the due date. You have never missed a due date before. Oh crap, I have had to take money out of my savings to pay some of my bills. Oh yeah, I had to miss a week’s work. When was the last time I ate dinner with my kids?

I need a break; you think to yourself. But, how and who will step-in?

It is about this time that you start to look around and see how much time your helping has turned in to over these past couple of years. You start wondering and evaluating what has been happening and what would be best.

Questions to ponder:

Is what I am doing for them necessary or can they do it themselves?
Are you doing these things so others will sing your praises?
What can be delegated to other people?
Are you trying to exert control over a situation that is uncontrollable?
Are you feeling guilty?
Do you feel resentment building up?
Are you open to others helping?

These are hard questions. These are necessary questions for you to answer to help you realize where you are and how you feel. Maybe you have some guilt trying to run your life. A little guilt is good for us. It makes sure we are doing things for the “right” reason. When you start the “Should” in your thoughts and sentences, watch out. Big guilt heading your way. “Should’s” need to be stomped out of our vocabulary. That would stop a lot of the guilt. Are your “should;s” coming from what other people say? You could say, I can’t do that, but you are more than welcome to do that.

Be open to seeing you have options

You are not all powerful. You are not all knowing. You do have options. Be open to seeing the possibilities. What do you want to be? What do you want to take care of? What are you good at? Your own attitude towards situations do make a huge difference in how you feel about a task.

Set certain days for certain things. Example, Medical Mondays – all appts. Need to be on a Monday morning. Grocery store Thursday evenings. Find the day and time in your own schedule that will work for you.

People are usually willing to help. However, they cannot read your mind. Make that list of things and keep it ready. Pull it out and sign them up. Need a meal fixed, put it on the list. Does the yard need to be mowed? Put it on the list. Laundry? They can pick it up and bring it back when they are finished. Do you need a “go-fer” for the day? Add your errands to the list.

The new normal

Your new normal does not have to be awful. Your new normal does not have to always be stressful. Your new normal does not have to take over your own life. Your new normal does not have to cause resentment

Your new normal can be a blessing. Your new normal can bring your whole family closer together. Your new normal can help you learn to delegate better. Your new normal can help you to communicate better. Your new normal can be whatever it becomes because you are open to the possibilities.

Pat

Let it be … Even though every fiber of your being tells you not to let go of control

Posted on December 9, 2021 by Pat - #alzherimers, #caregiver, #ms, #parkinsons

December 8, 2021

Some of you are breaking out in a sweat right now. WTF! I can’t let it be. It will be a disaster. He won’t do it like I do it. It will be a mess when I get back. If I don’t tell them what to do, they won’t do anything. And many, many other statements. We try to control every area of our lives and usually the areas of our loved ones lives.

What to deal with first?

Let’s start with the control freak or as I like to call them, the person that “likes to take charge.”

Who are you and why are you a control freak? Usually, a control freak is driven by an urge that they want everything done in a way that THEY feel is correct. Sometimes, it is because the control freak does not have control in an area of their own life and they will seek to control something that they feel they can control. It is also possible that the control freak has an obsessive-compulsive disorder, an anxiety disorder or possible a personality disorder. Sometimes, it is the person that has been through it before and has the experience. Other times it is the person who will step up and handle the situation. So, you see, there may be many factors as to why a person seems to be a control freak.

If you are the control freak, check yourself before you wreck yourself and your relationships. What are the real reasons behind your behavior? Is it truly to help the other person or is it for your own benefit? Do you trust others to handle situations as they arise? The better question is, will you trust others to handle situations as they arise?

Let go of the need for control

Being effective does not mean you always have to control things, people or the situation. The reality is that we cannot control things, people or situations. The only thing that we can control is ourselves and our own views. We can’t control the outcome. We can control our mindset. We can control our work ethic. We can control how we treat others. No, they don’t make you treat them any certain way, you choose to treat them a certain way. We can control what we eat, how much exercise we do, how much rest and destressing we do. We can control asking for needed help before we get to the end of our rope. We can control what we focus on. Know that what you focus on shapes what we do and how we feel. Will you focus on possibilities/solutions or will you focus on the problems?

I have heard this phrase a lot, but I could not understand it for the longest time. “Let it go.” How in the hell do you let something go? You still think about it. You still wonder. You even still try to fix it. I finally read something that helped me to understand what “let it go” really means. It means to “let it be.” Let it be just as it is, right now. There is nothing to do but accept it as it is, right now. You don’t have to like it. You don’t have to fix it. You don’t have to feel a certain way about it. I know realize why I have always hated the phrase, “it is what it is.” I hated it because it frustrated me and because I could not accept that “it” could not be changed. Only accepted, as it is, right now. I didn’t have to like it. I didn’t have to fix it. I didn’t have to do anything.

Embrace change and let the uncontrollable be

It’s funny, when I stopped fighting the things that were not going to change and changed how I reacted to them I was much calmer and more at peace. I had to learn that it was my own reactions that were hurting me. I had to decide what I will accept or put up with and what I could not accept or put up with. Decision’s time!

Things you CANNOT Control:

- If people like you or dislike you

- Other people’s feelings

- Other people’s thoughts or beliefs

- Other people’s actions

- Who our relatives are?

- The weather

- The past

- The exact outcome. Of anything. Ever.

If it is not an immediate danger. Cool your jets. If death is not imminent, wait. Sometimes, things need to work themselves out. A few failures are a good thing. They are learning times. Failure is an event and never a person.

Be the flexible, can-do person. Understand that plans change. Priorities change quickly. Adapt to making the best decision possible with the information that you have, right now. Update as needed.

Learn to have no attachment to outcome

Have no attachment to the outcome. Calm down, you have to learn to be in the present moment. There may be so many factors that go in to an outcome and we cannot control all of them. Be open to possibilities and outcomes, just don’t become attached to them.

Learn to accept change. This is so very hard. We are creatures of habit. That is not a bad thing, it becomes very frustrating and maddening when we do not make allowances for things beyond our control. Work on focusing on the top three priorities. Focus on the things that matter the most and let go (let it be) of the other things. Stop trying to change the unchangeable. Just because we accept “what is,” does not mean we give up hope or stop trying for the best quality of life possible.

What if the care receiver is the control freak?

When the strength and courage that you admired in your parents has now changed into control freak behavior, how can you handle them and it? You will be provoked. You will be angry. You may hear constant complaining. You may even feel like a servant sometimes. Annoyed, Frustrated, Resentment and Anger coming up! Sadness will be there too. Watch out for your triggers to be triggered.

Manipulation by elderly parents:

- They may guilt trip you

- Nice to your face but talk about you to others

- They want everything done in a specific way

- They complain about family members, nothing pleases them & everything you do is wrong

- Easily becomes upset at just about anything

Why is this happening?

It may be their nature and they were always this way. It could be a new thing that has happened over time. Usually, they are trying to regain some kind of control over their lives and situation. The loss of personal power and control is awful. It is sometimes scary to have to depend on someone else for your needs.

Have them do everything that they can do, even if it takes longer. Let them make decisions, whenever possible. Ask for their opinion and advice. Everyone wants to feel useful. Don’t force them on to your schedule for the more intimate needs such as bathing. Let them decide on that time. It may only be an inconvenience to you, imagine what it must be to them. Let them keep their dignity and I promise you will have fewer battles. Of course, you may have to set boundaries and that is fine. Put yourself in their shoes to understand where they are coming from and do your best to accommodate them. We all want autonomy and independence. It may be time to bring in the backup care givers.

Don’t take over, just help

As a care giver, you are there to provide them with help with what they cannot do. Your role is not to take over but to become more of an aide or helper. Encourage them to do all the things that they can do, even if it takes longer. Family dynamics will certainly play a role in a care giving and care receiving need. Everyone has a right to feel safe and to be safe.

Routines are good things. Once we have our routine, we no longer have to use excess brain power to figure things out. We just do them. Routines are good for care givers and care receivers. Figure out the best routine (one that is doable for the receiver and the giver) and implement it. Update, when needed. Agreement is the key. The care giver must be more flexible than the care receiver. The more you can fit in to their routines, the less pushback you will have. Remember to enjoy each other. Those are the moments that you will treasure.

Pat

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