My husband has been under the care of hospice 11 months and shows no sign of slowing down, which is fine with me, but I struggle over the best way to care for him. After 2 years of nightmare experiences with in home caregivers a few days a week for my respite, I decided to try a memory care facility day care program 2 days a week. I love that it has activities, brain boosters, etc., although my husband sleeps most of the time and, although he seems content while he's there, he really doesn't like to go and grumbles all the way there. I feel the activity is actually improving him. If he really is dying, and who knows, do I keep trying to improve his quality of life or let him Rest In Peace? How does one know what's best? He has Parkinson's and dementia.
Well, she got sick (UTI) and was in hospital. After that stay, she went to rehab. She has declined cognitively. She now can't remember the simplest steps to accomplish a task like getting dressed, going to the bathroom (almost completely incontinent now), or even eating meals. So I am currently her full-time caregiver.
I need to be working, but husband doesn't want strangers in our home when we aren't here. (Legitimate reasons relating to his business.) He also thinks it's too much for me to take care of her. I do have to change her every 2 hours, get her up standing or pushing the walker every hour or so to prevent too much pressure from sitting, etc. This is only week two. I see the benefit to never looking further ahead than the next hour.
My problem with putting her in somewhere (SNF or memory care) is guilt. She cried and wanted out of the rehab/nursing facility every day she was there, even though it was basically a decent place. I'm concerned with the eventual medicaid lookback (5 years) since she probably only has funds for 2 years of care if we can get her house cleaned out and sold.
I'm also angry that my siblings say sorry, let us know what we can do - while at the same time, not being willing to even take mom for a day or weekend during the past 4 years. They don't care if I put her in a nursing home. This doesn't affect them either way.
After reading all the responses here, I'm going to look into day care and/or in home care for a few hours a week so I can leave the house and get groceries and do errands.
My wish for everyone is a good night's sleep. That is what I crave the most!
You're a hero
None of this easy and having mom in a facility will present its own challenges too but if you can't get good help at home you may need to place mom
Broke my heart last night when my mom started crying when I put her to bed since she knows that is when I leave
May I ask if your mom's house has been empty the past 4 years while she's been with you ?
With my grandmother, her 7 kids all agreed at 92 she needed to move to a facility. 2 years later she is still alive and adjusting. One just never knows. I wonder what will happen to me when that day comes when I can't stay in my own home.
As a caregiver to my brother with ALZ it has been a roller coaster ride. Professionals were right, his self & behavior, especially with me, would not get better or change. This saddens me because I am concerned what will happen when the "when time" is a necessity.
I have been "it" for caregiving, behavior a concern. I am always seeking & trying the right approach to assist him. I may have to use a new tactic or fib to do for him what he is now unable to do. His care takes time, patience & "an on the ball" mentality. It can be frustrating & stressful. I do realize a bad day or moment is not always his fault or anyone's. ALZ is an unpredictable disease.
I've witnessed that consistency, routine & structure work. A facility, a day program strives for that & it's hard to duplicate at home. It takes a team approach & yes, a finely tuned one all the better. I don't know if an inconsistency of assistance & people is fair to anyone.
I am starting to understand the reality of it all though & maybe that's the way it should be. It's about us, the caregivers as well. We have to care about ourselves. Trust our decisions & reasonings.
Blessings 🌸