Does anyone here take care of parents in their home?

Smilinpj

Hi, I have never written a post here but have stopped by a few times to read posts.

My parents moved in with me about 1 1/2 years ago (March). Mom (87) had Level 6e AD and dad (91) has dementia. Mom is in level 6e, where she is talking jibberish at times, knows very few words, and apparently I change completely to her, depending on what I'm doing! (LOL).

Anyway, I have to say ((tearing up a bit here)) that I am starting to get scared. She just started to be incontinent, but still refuses help in the bathroom. She hides her accidents in drawers and closets - or doesn't even realize it's a problem. She can barely walk because her knees are bone on bone, but refuses to sit in a wheel chair. Both her and my dad are so very private, have been all their lives. The plan is they do not go into a place, that they stay together and with us until... I know eventually we will have hospice help, or maybe additional nursing help, but here is my question: Has anyone one on here done this? Made it through to the end? I am just scared at this point of being able to handle it. I guess I'm just needing some encouragement.

Thank you for listening!! :)

DCCEPEK

https://alzconnected.org/discussion/67469/does-anyone-here-take-care-of-parents-in-their-home

Absolutely. As I sit by my MIL to make sure she doesn't do something a toddler would do. We have a restroom schedule every 2 hr.,totally incontinent or diaper change. She's doesn't move from her chair until you move her. She has to be fed. My husband and I are 65 it's hard. Financially we have no choice and do the best we can. She's healthy other than being blind deaf and stage 6 plus. Hospice comes once a week says she doing good. She doesn't even know she exists. Hallucinates more than sleeping. IT'S HARD and basically have no life til hers ends💧

mommyandme (m&m)

Yes, my mother died at home with me by her side. In fact, it was one year ago today. I made it til the end, although many times I wasn’t sure if I would or could. She and I were together for 2.5 yrs on this journey. I only had one patient to support, I think two would be very difficult especially without respite relief or hospice care. My mom was with hospice for 1.75 years and started when she was beginning stage 6. They were an invaluable extra layer of support. If I were you I’d give a call in to get a hospice evaluation. They provide supplies, medication, equipment, bathing and medical help, among other things, covered by Medicare. Being admitted to hospice doesn’t mean only expecting 6 mos left of life for dementia patients, usually. My mom was later stage 7 when she died, but getting covid ended her, not actually dementia, although both are listed on her death certificate. Hospice, this support group and lots of helpful women (from a hospice volunteer and a self pay service) coming in to give me a break was the only way I survived, oh and I should mention an extremely supportive husband and my out of state brother.

Do you have some support? Someone to give you relief, relatives, friends etc…? Please call one or two hospice companies. Even if only one parent is admitted, you’ll be a step ahead.

Im so sorry this is the journey you’re on. Keep coming back here, so many wise and supportive folks.

Smilinpj

Wow DCCEPEK, what you are going through is so hard. It sounds like she is in Level 7, beyond where my mom is at this time. I guess because her body is in good shape that Hospice is only once a week?

And thank you m&m, too. My mom was admitted to Hospice almost 2 years ago, so I do know they can help. But she was doing well enough that they kicked her out. As you both know there are some days better than others, but right now my biggest worry is how difficult it is for her to move due to her knees hurting her so bad. I am afraid of hurting my back or my knees worse. I don't know what we'd do then! She eats ok, much smaller portions now, and coughs/chokes often due to some going the wrong way. I did get some lessons on how to get her up from the dinner chair, but even with that I could get hurt too. Once or twice they've been ill since they moved in, and those are the times that are truly scary as she can't follow any simple commands and trying to help her turn makes her cry out in pain, worse because she isn't helping.

The one thing I am blessed with is her happiness. She hums and lalalas at the top of her voice (!) and is pretty easily distracted. She talks to the different musical animals and Santa and says, "Good one." when they finish a song. It's the mobility. Falling is really not a question of 'if' but when.

Thanks for listening and you both have my positive thoughts.

smiley

mommyandme (m&m)

Hospice also discharged my mom even though she was steadily declining and was bed bound. I could do all that she needed and she could hang on like that for quite awhile. I understood the reason but I felt a bit abandoned lol. Two months later I had to call them back when it was clear she was transitioning towards the end of her life after the Covid struck.

My mom was somewhat able to pivot in and out of the wheelchair, but eventually fear of moving/falling overtook her. She hated getting out of the bed so for her peace and comfort, she never left the bed again. A few weeks before hospice left they ordered in a hospital bed and alternating pressure air mattress. That was so helpful for changing her in bed. Because she hated to move at all we ended up buying the equipment from the DME place hospice contracted with so she wouldn’t have to feel the change. My husband thought I was premature in moving the hospital bed to the living room so she could stay there indefinitely. When he tried to help me move her from the bed he realized, nope, she must stay here for her own security. People just don’t get it unless they’re in it constantly and my husband was involved plenty and still questioned it.

I wonder if your moms difficulties with ambulation and choking may be a reason to call hospice again? Maybe a wheelchair is her next step? I know when we went from walker to mostly wheelchair it was a milestone I had trouble accepting. Getting her in and out of the wheelchair for the toilet and her recliner got so hard. I had to give up the bathroom and had to get her in bed to change her now tabbed briefs. (Diapers). That was the safest way. Then came the hospital bed which helped with changing her as I could raise it. Then pivoting at all was too difficult hence the hospital bed being moved to the living room and then I only had to get her two feet to the recliner. Getting her in the recliner was for me I found out, so bed bound it was. Then came the air mattress. Oh how wonderful that was, so easy to roll her over to clean her up.

It’s very difficult to watch and accept the decline. I’m sorry.

Smilinpj

https://alzconnected.org/discussion/comment/191919#Comment_191919

My (((((hugs))))) to you. I don't know how you do it. We are just entering the incontinence zone. 3 major poop episodes in the last two weeks. I don't know how to stop it from being a mess because she still potties on her own. By the time I realize there is a problem, she's got it everywhere and before I'm done I'm in tears and she's at the sink singing - which makes it even worse for me! I have to find a way to toughen up or something. You are doing great, I just know by what you posted. I hope I can do as well…