How to decide if it is time to move a loved one into assisted living?

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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.

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Longears, your question is one I struggled with for a long time, but it was regarding a parent, which I'm sure is easier than when it's regarding a spouse. Even so, the decision to move my dad into the best memory care facility I could find and that was close enough for me to visit daily was still a hard one to make, but was something I knew I had to do due to sleep deprivation and knowing that I was also neglecting my own family.

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.
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Reply to bicycler
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Longears,
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.
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Reply to SueC1957
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Longears, you know you are trying to do the work of 3 full time caregivers, eventually it will all catch with you. Sounds like you are already crashed and burned. One thing to think about is that about 40% of caregivers pass away leaving behind their love one. Then what? Chances are that person will either go to a relatives house or into Memory Care.

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.
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"I want him to be safe" --- This says it all. The safest place for your husband is now in a facility where he gets care around the clock. Understand, that since he wanders, it will have to be a memory care facility. I found a good one 10 minutes from my home when I needed a place for my Mom. They only took memory care residents into their assisted living facility.
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.
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Reply to geewiz
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I just jumped on to this after visiting an assisted living facility for my mom. I am facing the same circumstance, but on a smaller scale. She is not as progressed, but I see the writing on the wall. She was a caregiver herself and the stress of it has caused her own health and memory to decline at a rapid pace. She tried to manage her significant other, who recently had to move to a memory care AFH (which is beautiful).
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!!
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Reply to aslanliveshere
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Freqflyer, SueC1957 and bicycler, Thank you so much for your responses! The 40% of caregivers dying first scares the heck out of me. Our daughter says she can't lose her mom as well as her daddy. The hours required for care giving 24/7/365 are mind boggling! I never did the math or looked at things from that angle.

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!
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Reply to Longears
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You are past burnout and it is time. Personally, I disagree with the idea that you move with your husband into memory care. You do not need it. He does. It would be very complicated for a spouse to be different than the other residents. I saw that once. I also saw staff trying to prevent the well spouse from leaving on occasion because they knew she resided there and were used to preventing residents from leaving. As for bouncing back and forth between an apartment and a farm, it could make thing worse. Stability and routine is important for people with dementia. My mother goes wonky if her laundry is done at a different time or one of her tablemates sits in a different chair.
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Reply to Rosyday
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Rosyday, HolidayEnd, aslanliveshere, Thank you so much for your insights and advice! It is hard for this lumberjack to see the forest for the trees. I keep sawing away at the tree in front of me only to find another tree and another and .... Sigh! My arms get so tired of sawing. Someone told me to realize that once hubby is placed, he is never coming back home. That I need to be confident that I have done everything to the best of my ability or I will fret myself to death with "what if" questions. God bless each of you for taking time to respond.
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Geewiz, The memories you have of that time spent with your Mom are wonderful! I would love to enjoy quality time with my husband and be present in the moment. I can't remember a time I wasn't exhausted and worried.

Karsten, Living together in an apartment in AL could work. I would have to sell the house, land and animals for us both to move into AL. Our Primary Care doctor suggested getting a small apartment in town close to the adult daycare, shops, restaurants and medical specialists, but keeping the main house and farm. We would live in town weekdays and on the farm weekends and holidays. I think too many moving parts are involved with that idea!!

Bless you both for considering my question and providing insight!
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Reply to Longears
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When the police get involved is a definite sign. Your husband wanders, prevents you from sleeping, it is about to kill you caring for him so now is the time.

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.
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