Does anyone here take care of parents in their home?

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.

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.