1. < Caregivers: Dementia

Alzheimer’s, Parkinson’s and obesity

Posted by janty @janty, Jan 18, 2023

Hi, I’m new to the group and grateful for its existence.
My 75 year old husband has Alzheimer’s and Parkinson’s and weighs in at 300 lbs. He gets little exercise, as much as I can persuade, but he’s very weak. He is now very uncertain when walking, stopping every few steps to test the ground with his foot as if searching for a step, making even walking for exercise a challenge.
He’s generally pleasant but increasingly difficult to care for because he can’t follow directions, such as ‘lift your right arm’ and he’s way too big for me to move, nor does he want to move!
He’s up several times at night and I need to help him use the bathroom, get back in bed and get his CPAP mask on. It often takes some time since he can’t follow directions about getting in bed. He sits on the end of the bed and can’t navigate himself into a sleeping position.
I feel like I should be asking a clear question instead of venting, but all I can think of is “ how in the world do you do this?” Long term care is not affordable and I couldn’t do it anyway as long as he is able to enjoy our home.
Thanks for reading this.

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Jan 18, 2023

H,i @janty Welcome to the community. I'm Scott and I was my wife's caregiver during her long war with brain cancer as well as a secondary caregiver for my mother-in-law who had dementia.

While I understand that every patient, their health journey, and caregiver are unique, I will offer some of my experiences in the hopes they might be of some small help to you.

In my case we needed additional in-home assistance when I could no longer do it all for my wife. I was able to find someone to come in just a couple hours a week and that really did help. Then when things progressed we opted for home hospice care for my wife.

In between we did find using a hospital bed was an incredible help in getting my wife in and out of bed. We used a Hoyer Lift to help lift her later on as well. We also used adult diapers during the night so she could not have as many nighttime sleep interruptions, along with pads on the bed. None of these were perfect but they did each help at a certain point in time.

My wife's activity level also declined as her body needed more and more of its energy to fight her disease. It was explained to me that the brain tries to focus only on the most critical of needs, so exercise, etc. can decline at times when the disease is increasing.

As far as how does anyone do this, I can only say someone once said to me "Courage does not always roar. Sometimes courage is the quiet voice at the end of the day that can only manage to whisper "I will try again tomorrow."

If I may ask, how long has your husband been diagnosed with his Alzheimers and Parkinsons?

Strength, Courage, & Peace

REPLY
1 reply
centre | @centre | Jan 19, 2023

The Parkinson’s makes physical movement difficult, the Alzheimer’s makes understanding Step 1, 2, etc to perform the movement difficult. Something that worked for me- get a bariatric bedside commode, place alongside the bed near his pillow, facing the bottom of the bed. When he has to go, he sits up to the edge of the bed, makes a quarter turn onto the commode, uses, quarter turn back to the edge of the bed, legs up to lie down, caregiver empties the commode bucket. This method has just a few steps, versus managing him getting up, walking into the bathroom, on and off the toilet, walking back to the bed, into the bed, now fully awake. I bought the commode on Craigs list. Many communities have service clubs that store and give out “durable medical equipment”.

REPLY
1 reply
centre | @centre | Jan 19, 2023
In reply to @centre "The Parkinson’s makes physical movement difficult, the Alzheimer’s makes understanding Step 1, 2, etc to perform..." + (show)
@centre

The Parkinson’s makes physical movement difficult, the Alzheimer’s makes understanding Step 1, 2, etc to perform the movement difficult. Something that worked for me- get a bariatric bedside commode, place alongside the bed near his pillow, facing the bottom of the bed. When he has to go, he sits up to the edge of the bed, makes a quarter turn onto the commode, uses, quarter turn back to the edge of the bed, legs up to lie down, caregiver empties the commode bucket. This method has just a few steps, versus managing him getting up, walking into the bathroom, on and off the toilet, walking back to the bed, into the bed, now fully awake. I bought the commode on Craigs list. Many communities have service clubs that store and give out “durable medical equipment”.

Jump to this post

Forgot to mention- try the “log roll technique” to get him up to sitting, have him roll onto his side (you hold elbow to elbow and give him a gentle pull if needed), once on his side, guide his legs to drop over the edge of the bed- the weight of his legs going down will bring the rest of him up to sitting. Reverse for lying down, guide him to lie down on his side, he rolls to his back, bringing his legs up. My husband is very tall and I’m short- trying to help him to sit up by bending at the waist has proved spectacularly unsuccessful.:)

REPLY
1 reply
janty | @janty | Jan 20, 2023
In reply to @IndianaScott "H,i @janty Welcome to the community. I'm Scott and I was my wife's caregiver during her..." + (show)
@IndianaScott

H,i @janty Welcome to the community. I'm Scott and I was my wife's caregiver during her long war with brain cancer as well as a secondary caregiver for my mother-in-law who had dementia.

While I understand that every patient, their health journey, and caregiver are unique, I will offer some of my experiences in the hopes they might be of some small help to you.

In my case we needed additional in-home assistance when I could no longer do it all for my wife. I was able to find someone to come in just a couple hours a week and that really did help. Then when things progressed we opted for home hospice care for my wife.

In between we did find using a hospital bed was an incredible help in getting my wife in and out of bed. We used a Hoyer Lift to help lift her later on as well. We also used adult diapers during the night so she could not have as many nighttime sleep interruptions, along with pads on the bed. None of these were perfect but they did each help at a certain point in time.

My wife's activity level also declined as her body needed more and more of its energy to fight her disease. It was explained to me that the brain tries to focus only on the most critical of needs, so exercise, etc. can decline at times when the disease is increasing.

As far as how does anyone do this, I can only say someone once said to me "Courage does not always roar. Sometimes courage is the quiet voice at the end of the day that can only manage to whisper "I will try again tomorrow."

If I may ask, how long has your husband been diagnosed with his Alzheimers and Parkinsons?

Strength, Courage, & Peace

Jump to this post

Thank you for your post, your suggestions and encouragement.
It seems that you have been a loving caregiver.
He has had symptoms of both for several years and his diagnosis is three years old.
We purchased an adjustable bed and he’s getting used to it but often positions himself so close to the end of the bed that it’s ineffective.
I’m currently researching home care, just a few hours a week for companionship for him and a break for me. Its unfortunate that cost drives such decisions, isn’t it.
Thanks,
Jan

REPLY
1 reply
janty | @janty | Jan 20, 2023
In reply to @centre "Forgot to mention- try the “log roll technique” to get him up to sitting, have him..." + (show)
@centre

Forgot to mention- try the “log roll technique” to get him up to sitting, have him roll onto his side (you hold elbow to elbow and give him a gentle pull if needed), once on his side, guide his legs to drop over the edge of the bed- the weight of his legs going down will bring the rest of him up to sitting. Reverse for lying down, guide him to lie down on his side, he rolls to his back, bringing his legs up. My husband is very tall and I’m short- trying to help him to sit up by bending at the waist has proved spectacularly unsuccessful.:)

Jump to this post

Thanks! We just got the commode and I think it will help. I forgot to mention that he uses a CPAP machine and he can’t get his mask on if he gets up to use the bathroom. This way he can just keep it on. Maybe we can both get some sleep.
He does wear diapers at night but can’t bring himself to use them, fear of leaks it seems.
I truly appreciate your suggestions.
Thanks,
Jab

REPLY
Mentor
Scott, Volunteer Mentor | @IndianaScott | Jan 22, 2023
In reply to @janty "Thank you for your post, your suggestions and encouragement. It seems that you have been a..." + (show)
@janty

Thank you for your post, your suggestions and encouragement.
It seems that you have been a loving caregiver.
He has had symptoms of both for several years and his diagnosis is three years old.
We purchased an adjustable bed and he’s getting used to it but often positions himself so close to the end of the bed that it’s ineffective.
I’m currently researching home care, just a few hours a week for companionship for him and a break for me. Its unfortunate that cost drives such decisions, isn’t it.
Thanks,
Jan

Jump to this post

Good morning, @janty Yes, it sure is unfortunate that money/cost drives so many decisions, especially when it comes to support needed by caregivers to help make the lives of their loved ones, and their own, somewhat easier.

It's a rough road for sure and I hope you are able to find some reasonable help!

Strength, Courage, & Peace

REPLY
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