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.
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 🌸
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.
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 ?
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!
After a few months, being tired, from working, being away from my family. I had to make the decision for mother-her condition was not improving. There was never-ending situations with the home care staff. My mother and I was stressed. The AL facility is great, my mother is adjusting. I am trying to get my life back.
I think we as caregivers for our parents, want to do all that we can to keep them home and care for them. I am learning to have no guilt about the decision I made for my mother. I found that the time, and energy needed to care for my mother was greatly affecting me physically, and mentally. I love my mother with all my heart but I am physically and mentally tired.
Then comes one that was recommended from a friend of a friend, she seemed great also, very talkative, friendly, and recommended from someone who actually retired for the Police force as a dispatcher. Well I guess I should have checked her record!!! Bad mistake there, called in sick all the time or just did not show.
The third one I though well this is perfect!!! long term friend, also lived in my home twice trying to help him out. I trusted him so much we had a 12 year friendship and to me I considered him part of the family. Well again, After Mom was rushed to the hospital and we were advised by the doctor to place her in a home for her safety, she had started to fall and needed round the clock care. At that time I started to get my senses back, after 4-5 years of dealing with this your kind of brain dead. This time I realized that my dear friend had purchased his Gas, Beer and Food Even tools off of Mom's credit card.
She is now in a very nice home. I hate that she is not with me but I know its best for her. We are so fortunate to have found the place that we did. I can't speak highly enough about the facility and the staff members, all of them are wonderful. I do worry sometimes because I see Mom fading fast and I don't know if its the disease or if she sees others that are way worse than her and she is becoming like them. It really bothers me. I hate this disease!!!! I don't want my Mom to live this way but I don't want her to die.
Mom's is $330 a day plus I have personal caregivers with her 12 hours a day but she is correct that they let the residents do and say what they want which means they largely ignore them
Fights break out, folks fall and UTIs are rampant as no one is changed or taken to the bathroom every 2 hours despite the $450 a month incontinence fee
Whether at home or in a facility, dementia is a long tiring journey for everyone
Another problem is that Medicare no longer allows rails on the beds and now there is an effort to ban bed and chair alarms. It seems the new thinking is that it is the patients right to fall. With all the interest in health care why is there no interest in healthcare for the elderly?
A beautiful new Memory Care facility opened up. I was getting tired from interrupted sleep every night and from having caregivers in my house everyday. We had just down-sized our home and we were trying to get used to the smaller place, when we had to take over mom's care. We moved her into the memory care unit. $4500/mo I supply briefs, pads & wipes, as well as her clothing, linens & hygiene supplies. I was amazed by the relief I felt and how my mother adapted so soon. I did have some issues with the caregivers, mostly because of her incontinence and anal redness. I had her PCP order Calmoseptine twice daily, instead of as needed. I found out that PRN/as needed meds are rarely given. I'm told that the CNA cannot make medical decisions, but the med techs don't assess (look at her butt). So a twice a day order has worked. They toilet her every 2 hrs, while awake. This is a $500/mo incontinence fee, included in the $4500 that I mentioned earlier. The caregivers are trained to allow the residents to do and say what they want. They go along with their crazy stories and redirect them if the are stressing over something. My mom asks where her husband is very often (he is deceased) and they say he is playing poker or at Walmart. She is fine with that. My sisters and I had a hard time in not correcting/arguing with her. We have learned a lot, since mom has been in the facility. Hope this helps. Your health and wellbeing is important. You can visit as often as you want & you can be free to enjoy your life. God Bless you all!
Anyway, my feeling is that when our loved ones are nearing the end of their lives, we should allow them to indulge in any pleasures they want. Why not? That's what I hope for when I'm at that age. (If you haven't read Roz Chast's brilliant graphic memoir about her parents' decline, get it asap!)