input needed - full time caregivers questions

gramsjenny

Hi everyone! My parents, brother and I take care full time of my grandmother who is 91. We have for about 6 years. She has advancing (more rapidly now it seems) dementia and we need help. She is now fully incontinent and wears adult diapers. She fights my mom when she is wet and we want to change her and clean her up. There are days we come to her room in the house (she has the living room and the half bath) and she has thrown her wet pants on the floor by the fireplace or on her walker, with or without the diaper in it, and sits with no pants on at all on her bed. Or she has urinated on the floor and there is a trail. The urine has destroyed the laminate floors my folks had put down. My mom is constantly washing her sheets, her clothes. She forgets she eats or drinks and will say she is hungry or thirsty at least twice an hour. She fights us when we want to wash her up. She fights when she has to go to the doctor. She knows everyone, remembers favorite things, etc. Says multiple rosaries a day. She loves the Christmas tree and its still up in her room (its artificial). She still flirts with her hematologist every time she see him. She has leaky valves in her heart but her cardiologist says she is in great shape and her heart could go around 5+ years. We live in a colonial so we are up and down the stairs constantly. We are thinking of installing cameras so we can watch her from upstairs if we aren't down there. My dad has found her in the kitchen at the fridge in the middle of the night. We are emotionally and physically exhausted and get no help from my uncles. My one aunt lives in town and helps periodically. My mother has almost constant migraines. She responds better to me it seems and I think its because she and my mother have had a difficult relationship. My grandmother has been controlling and bossy over the years and it has affected my mother. We don't want to put her in a nursing home. It will kill her. If we bring in social services they will want her to receive a COVID vaccine and that is a no. Or she could be exposed to it. We want to care for her the best we can and we all love her so much. If anyone has any ideas, I would appreciate it. Thank you!

star26

Hi gramsjenny, The “Ring Indoor Cam, Compact Plug-In Camera” works well for me and saves some trips up and down the stairs. ($60 each). I also use “Munchkin Xtraguard Dual Action Multi-Use Latches” on door and drawers I don’t want opened, including the refrigerator. Available on Amazon.  The BuckandBuck website sells an “adult onesie” that keeps a person with dementia from being able to remove their underwear/diaper. It might be worth a try. People on this site have used various layering methods when making the bed to minimize wet sheets and daily laundry. For instance, waterproof mattress cover, waterproof incontinence pad, bottom sheet, washable waterproof incontinence pad, disposable waterproof incontinence pad. All are available on Amazon. Maybe she needs a different incontinence garment at night, or doubling up, or a different bathroom/changing schedule at night if she's leaking through her pants and uncomfortable during the night. Stay tuned...others will come around with more ideas in the next few days. 

harshedbuzz

gramsjenny wrote:

Hi everyone! My parents, brother and I take care full time of my grandmother who is 91. We have for about 6 years. She has advancing (more rapidly now it seems) dementia and we need help. She is now fully incontinent and wears adult diapers. She fights my mom when she is wet and we want to change her and clean her up. There are days we come to her room in the house (she has the living room and the half bath) and she has thrown her wet pants on the floor by the fireplace or on her walker, with or without the diaper in it, and sits with no pants on at all on her bed. Or she has urinated on the floor and there is a trail. The urine has destroyed the laminate floors my folks had put down. My mom is constantly washing her sheets, her clothes. She forgets she eats or drinks and will say she is hungry or thirsty at least twice an hour. She fights us when we want to wash her up. She fights when she has to go to the doctor.

It sounds as if it is difficult to provide care needed because of your grandmother's agitation and non-cooperation. It would be a good idea to take her to a geriatric psychiatrist for a medication evaluation. Often this kind of behavior is driven by non-specific anxiety; relieving it would improve her quality of life and your as well. 

Buck and Buck has one piece outfits and pajamas which prevent a PWD from taking off their clothing. Getting these one will only be possible if she's being cooperative, so the geripsych should be the first stop. One piece clothing will not help with her not fighting your mom to be cleaned up or changed. 

Jumpsuits - Women's Adaptive Adaptive Clothing for Seniors, Disabled & Elderly Care (buckandbuck.com)

She knows everyone, remembers favorite things, etc. Says multiple rosaries a day. She loves the Christmas tree and its still up in her room (its artificial). She still flirts with her hematologist every time she see him. She has leaky valves in her heart but her cardiologist says she is in great shape and her heart could go around 5+ years.

Just an aside. I find it's really hard to get a sense of how long a leaky valve will be functional. My mom's interventionalist gave me a 5-10 year window for TAVR after her last catherization 2 years ago but things progressed rapidly and she ended up with the procedure over the summer. 

We live in a colonial so we are up and down the stairs constantly.

It sounds as if your grandmother might need more companionship in the moment to redirect and assure her. Given that there are 4 of you, perhaps one could sit with her when she's awake to circumvent the undressing.

We are thinking of installing cameras so we can watch her from upstairs if we aren't down there.

Cameras are always an option, but they're more of a reactive solution than a proactive one.

My dad has found her in the kitchen at the fridge in the middle of the night. We are emotionally and physically exhausted and get no help from my uncles. My one aunt lives in town and helps periodically.

That's unfortunate, but very typical.

My mother has almost constant migraines. She responds better to me it seems and I think its because she and my mother have had a difficult relationship. My grandmother has been controlling and bossy over the years and it has affected my mother.

Caring for a parent with dementia is always hard but it can be exponentially more difficult if the relationship was challenging for some reason. This may be your mom's call to make.

We don't want to put her in a nursing home. It will kill her.

There are facilities that may be able to give better care than she's getting at home. Given that she's still engaged, she might get into less mischief with a routine of dementia-informed activities.

When my dad's care became too great for my mother and I, we placed him in a very nice MCF. He, too, was not a cooperative and easy PWD. One thing we hadn't anticipated was that he cooperated with staff there and ended up cleaner, more hydrated, and taking his medications as prescribed- all things that were a battle at home. And we could go back to being his wife and daughter who brought treats instead of trying in vain to get him to change or take his meds.

If we bring in social services they will want her to receive a COVID vaccine and that is a no.

I would call various agencies to see what their policy is. Perhaps there are vaccinated HHAs who would be willing to come into the home. 

 Or she could be exposed to it.

She would be greatly at risk. A few people here have had a LO survive COVID, but my husband I know 4 people with various dementias who died from it earlier in the pandemic.

We want to care for her the best we can and we all love her so much. If anyone has any ideas, I would appreciate it. Thank you!

I would look into a geri psych eval.

mommyandme (m&m)

Cameras are “da bomb”! We use the Wyze Pan Cam.  Each camera was $30 on Amazon when we ordered them 1.5 years ago.  Very user friendly. My brother in another state can also keep informed of my mother’s goings on.  I use it when I’m in the next room even though she lives in a ranch style home. 

Sorry for your trials and tribulations.  This is all a huge bummer.