I am curious as to how others "knew" it was time to move their loved one into assisted living. It seems selfish or self-centered of me to consider moving my husband just because I am exhausted and burned out and occasionally find myself crying uncontrollably for no apparent reason. He started adult daycare 2 months ago and I feel so much happier and relieved during the day. However he is up most of the night pacing and changing clothes. When he does fall asleep he pushes me out of the bed. If I go in the spare room he follows me and the pushing starts again. He does not realize what he is doing. Nevertheless I am sleep deprived. He is tolerating daycare well. That is a miracle, as he didn't want to go and even ran away from home a few times to make me understand he wouldn't go. I had to call the sheriff dept to find him one freezing cold evening. We have special locks on the doors so he can't get out of the house without help but we were outside together when he sneaked away. He isn't violent or mean but gets agitated when he wants to do something and I won't let him. Sometimes he has hallucinations and has cursed at "me" while having a conversation with himself. He can no longer read and understand. He cannot write or sign his name. He has aphasia from left temporal lobe damage so he cannot coherently participate in a conversation or follow directions. Our daughter, our couselor, and our neighbors think it is time for me to at least consider placement for him. His symptoms started in 1999 but we didn't get his current diagnosis until a couple of years ago. It has been a long haul with no end in sight. I love him; I want him to be safe; I want him to be normal again; I want his life to be positive and full of daily joy. I don't want to die from the stress of everything.
One thing that I kept in mind while making my decision was what a long-time Alzheimer's support group facilitator told me, that he never knew anyone who, after placing their loved one in a facility, said that they had done that too soon. He had placed his own 65-year-old wife in a memory care facility after several years of care-giving, but only after their children told him that they didn't want to lose their dad in addition to losing their mom.
Like you, I found adult daycare provided some much needed relief, but at 30 hours per week that meant 24/7 caregiving was reduced by just 18% (8760 hours in a year / by 1560 daycare hours). The remaining 7200 hours per year of caregiving equates to the equivalent of 3.5 full-time jobs, but with no time off for holidays, vacations or sick leave. Freqflyer and SueC1957 mentioned that 40% of caregivers die before the person for whom they are providing care and I've read that the 40% increases to 70% for caregivers who are 70 or older. Stress and exhaustion kill and it is not selfish for you to want to survive by moving your husband to the best nearby facility you can find, which will enable you to frequently visit and monitor his care while still leaving some time to rest and take care of yourself. Caregiving is like a flight on a troubled airliner, you need to put on your own oxygen mask first so you can help those who can't do that for themselves. Best wishes.
It's time.
"It seems selfish or self centered of me to consider moving my husband just because I am exhausted and burned out and occasionally find myself crying uncontrollably for no apparent reason."
THAT is reason enough to place him as soon as you can. You are suffering for caring for him. You don't want to be one of the 40% of caregivers who die taking care of a loved one.
It's time. Don't feel guilty.
From what you have describe, it is time to think seriously about what to do next. While hubby is at adult day care, make appointments to see the various Assisted Living/Memory Care facilities in your area. You will know as soon as you walk in if the place feels right. Most places will offer you lunch, and I was surprised how good the food was. The place where my Dad moved was set up like a hotel.
I, or another family member, visited every day. The staff knew each of us by name. I advocated for my Mom and provided the extras that staff just doesn't have the time for . Hand massages, nail care, trips to ice cream parlors, treats brought to her, walks in the gated gardens, etc. The facility had religious services and it seemed that everyone attended whatever service was going on! : -) And I found that the Rabbis, ministers and Catholic Priests treated each resident with love. Kids from nearby schools and scout troops visited. Music programs played all of the old time music the older residents knew and loved. This was way more than i could have ever done at home by myself.
I worked with the staff to make sure my Mom had the best available care. And, I never felt guilty. When I visited each day, I arrived fully rested and smiling. I brought little treats --- a flower, some old photos to look at, a homemade cookie, a magazine to look at pictures together. Each day I arrived to find my Mom clean and dressed beautifully. I was able to focus on her.
Visit the memory care centers near you. It really sounds like it IS time. Keep us posted.
I am an RN, and I have worked with dementia patients, so I have a bit of familiarity with progression and potential issues. I also work full time and cannot care for my mom full time, nor can I come home and be "on the clock" 24/7. What I have seen is that the care facilities can be such a blessing - safety speaking, having a whole team for a giant job, having the right set up, and allowing family self care. The first few weeks are very hard, especially week three (not sure why), but by the fourth week things are usually so much better for all. Everyone matters in this scenario - I am saying this for myself as much as anything, because I am the one who comes last, holds the door, lifts the heavy stuff, goes to bed last, cleans up the messes, you know the drill. It is okay to need help with the burden of care - we were never meant to do it alone. God Bless!!
Some added threads in the tangled skein: we have a 20 acre cattle farm for which I do all the work and for the past year I am the one who is (supposed to be) keeping up with my mom in assisted living 45 minutes away. I am not doing a very good job on any task right now.
Our counselor is helping me work through the issue that due to my history of being abused as a child, I don't really know when enough is enough or how to assess if I am at the end of my rope.
I am so afraid of making a wrong decision that I am kind of frozen in place.
Bless y'all for taking the time to read and respond!
For me, the moment I knew mom needed to be out of her current environment was when I arrived at her house and she was blankly sitting on a stool wearing a dirty flannel nightgown with tangled hair, finishing off a container of Blue Bell ice cream.
I know that things were out of control because I know her, and what would be acceptable and unacceptable to her normally.
I agree, there's no shame in getting some help and putting him in memory care where he will be safe.
With my mom, I've realized early on that I can't do this indefinitely and we are looking at AL facilities for her. With my hubby, I know it would be harder to make that decision if he were at that point, but I would want to make sure he was safe too. The wandering incident sounds like it was really scary. I know you had mentioned on my shadowing post about mom that your hubby is a shadower as well. I know very well how tiring and draining the shadowing can be, and just feeling tired and sleep deprived all the time.
I would go ahead and look for a nice memory care place. Maybe you can take your daughter with you so you all can look together, and she can be there for support for you while you check out the place, ask questions of the staff, etc.
If it helps, you might think of it like he's still going to day care in a way, but more like a "sleepover" every day. I think you will be able to sleep much better knowing that he's got 24 hour staff to watch over him and attend to his needs, and you will be able to take care of yourself too so that you guys can enjoy your visits and time together without feeling overwhelmed.
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