I take care of my husband 24/7, except he goes to day care three days a week for only six hours and the rest of the time I have to be with him as they are afraid he will start to wander. Is it time for a facility as he is seeing things, afraid of the dark, thinks I am having a party in the living room and I am in bed at the time? He has been diagnosed with dementia and walks with a walker, cannot take his own meds, incontinent. Therefore laundry is a daily chore. He will not shower for me, says he just took a shower, and I can smell him from the other bedroom. All he wants to do is sleep, and therefore, does not get his meds on time and does not receive enough fluids and food intake. What do I do? I only have a son and daughter-in-law and they both own their own businesses and her mother is also in an Assisted Living facility and her dad needs care for appointments, etc., so I cannot expect too much help from them and their daughter just started college.
My husband had dementia and the situation was very much as you describe, except he wasn't incontinent until the end. Aricept really helped with the hallucinations. Is your husband on that? My husband took one drug to reduce anxiety and allow him to sleep, and another drug for excessive daytime sleeping.
I never promised to keep him at home until the end. I did promise never to abandon him, and if he developed problems that could be dealt with in a facility I would be there often and I would always be his advocate and see that he was getting good care. We had this conversation several times, during times he was lucid. He would have preferred a promise to keep him home, but I thought I should tell it like it is.
As it turned out, he was able to stay at home the full ten years. He had about 5 weeks of hospice care at the end.
I was almost 20 years younger than my husband. I think that makes a HUGE difference. He attended day care 3 days a week. When he got to the point where he needed more attention than the day program could provide we got a personal care attendant 30 hours a week. That was wonderful! We had a team of great doctors. It also helped that he retained his pleasant demeanor throughout the course of the disease.
The other person in my life with dementia was my mother. When she could no longer live alone, my Sis and BIL took her in. BIL is a total sweetheart and was supportive and helpful. Two people doing the caring makes a huge difference. They didn't need to find an elder-sitter every time they needed groceries. For respite I took her for a long weekend once a month and so did another sister. The third sister stayed with mother one evening a week. So the couple had some scheduled respite. Mom stayed with them 14 months. When her health worsened we moved her into a nursing home. She was there about 2 and a half years, dying at age 96. She was content and she got good care.
Deciding whether and when to place a loved one in a care facility is very stressful! And each situation is unique, so it hard to set guidelines.
I suggest you start looking at care centers so you'll be ready if you decide that is the best course. While he is still at home, I suggest 2 things: Talk to the doctor treating his dementia. Describe these disturbing behaviors and ask if there are medication that might help. The other thing is to have your husband attend day care 5 days a week, and get some help. Even hiring a house cleaner can free you up a little. You need respite!
Have you thought about sending him to day care more often? Or getting some help in the home? Maybe a professional to help with showering? Are finances something you need to consider?
I have heard others on the chatrooms say that if you are going to move a LO then earlier is easier on them. I don't know as we have decided mom will stay with us to the end. If you do decide to move him, you should feel good about your decision... You are making sure he is cared for.
It's time when you say it's time. I understand your anguish and send blessings,
Jamie
You can also consider hospice. My grandmother was just diagnosed with dementia last year but in May she began showing more severe signs (similar to your husband) in addition to getting ill more often as a result of poor hygiene and reduced food intake, despite my best efforts to assist her. I contacted the hospice I used for my father last year and I have been able to keep her at home until now between their help and the state program (she was in day care for awhile until hospice)...so it's a total of about 24-30 hours of aides a week.
That was enough before, when I was just working and gram could be alone for 30-45 mins or so if I was on my way to/from work and the aide had just left or hadn't yet arrived...and I had cameras set up too...but now it's getting to the point where I am too overwhelmed with her care and I am going back to school on top of working. It is time to place her in a NH.
The decision maker for me: she is not able to accurately tell me what she needs any more, or she gets upset if I try to guess and I am wrong. I don't know if she's hungry or not, or what she feels like eating. I don't know if she's in pain, or if I give her pain medication if the pain has been relieved. She refuses to let me change her dirty briefs and will actually push me away because she can't see (or understand) that they're dirty, but will then wear herself out changing into clean ones three times in 30 minutes. It is simply not safe for me and me alone (besides the paltry 24-30 hours) to take care of her, especially when I'll be exhausted from work and school.
Making that decision is hard on both of you. If it is no longer safe for EITHER of you, it's time. You'll be able to enjoy the time you spend with your husband more when you visit than now when you are trying to run around and do all of the caregiving tasks that are never ending. That's what is important.
It sounds to me that you already know the answer, that you know his needs are too great for you to manage anymore and he should be in an extended care facility. There comes a point in dementia or any degenerative disease where the act of greatest love is to admit that the disease has progressed too far for your own 24/7 loving care. That is where you are now, and to keep him home could even be construed as neglect since he is staying in his urine-soaked clothes, not receiving adequate fluids and not receiving his meds on time. If he is incontinent he should be in paper pull-up underwear (such as Depends). If he refuses this he should be in a facility so multiple people can reinforce these issues and not you. It is an act of love at this point in his disease to put him in a facility. Also, the physical deterioration aspect of dementia can progress very slowly compared to the mental aspect and he could stay at this level for many months or longer. That is too much care for one person to do. He needs a staff and you need a break. You can visit him daily at the dementia unit in a facility and this arrangement would be better for both of you. Reni Winter-Evans, MSW (Dec. 2017), CNA, HHA
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