I Feel so Awful….

hiya · May 6

my DH is cognitively stage 6. He layers clothes, confuses hand cream for tooth paste, hasn’t known me for a long time, (though he likes me). When he is having a good day and 4 hour respite, it’s easy but he has to stay continuously busy which is hard. He loves the out doors, hasn’t wondered but daily gets cuts from picking leaves out of rose bushes. We have a lake that I’m concerned he will wonder close too so I’m always up and down. He is on medicine for agitation and anxiety. He sundowns most nights. We’ve decided it’s time for MC for safety and to give me time to enjoy our children. When it’s a bad day I’m ready…when it’s a good day I’m so guilty and upset. I know he is going to hate it initially. The guilt is awful. How did you take your LO’s the first day? I’m dreading it and it’s hitting me more than I thought it would.

Carl46 · May 6

My LO was taken by a wheelchair transport van, but if she had been ambulatory I would have driven her. She doesn't like it and neither do I, because we want to be together, but I know I have to do it. Caring for her 24/7 was killing me. I don't feel guilt, really, more grief that I have to live alone and she has to live in MC. I moved her on the recommendation of her doctor and mine, for her sake and mine. Sometimes, you just have to use the part of the brain that thinks and override the part that feels.

I was having second thoughts the evening before she was to move. By morning, I knew I was right to place her. I was up most of the night, taking care of her. Every human being needs to sleep some time, and MC has a night shift.

Timmyd · May 6

At the advice of many people in my life including her doctor, I have been told to begin looking at placement for my DW. I am overwhelmed with every aspect of it and I feel paralyzed.

On the other hand, I recently realized:

I am literally running an at home memory care facility as a staff of one. The memory care personal care attendant is also the maintenance man, cook, janitor, nurse, psychiatrist, groundskeeper, procurement, administrator etc. The quality of care is not always up to standard of the patient's husband and the staff is overworked, emotionally drained, and physically exhausted.

SDianeL · May 6

the facility will help you. They recommended to me that I should make up a fib. They recommended coming for lunch and having someone come with me. We told him that we were having lunch with my daughter’s friend. I did not tell my DH he was moving into MC. Once we were seated, my daughter and I left individually making excuses. I did not say goodbye. After we left, the nurse told him that I needed to go in the hospital and he needed to stay there. He was upset but they quickly distracted him. They recommended to wait 2 weeks before I visited. He settled in and was playing a game when I visited him the first time. He asked to go home and I said when the doctor says so. Part of the fib was true because I was being treated for cancer. It was the hardest thing I have ever done but I kept telling myself I was doing it for him. He received excellent care. Praying for your strength. 🙏💜

l7pla1w2 · May 6

https://alzconnected.org/discussion/comment/242412#Comment_242412

Yesterday was three weeks since I placed DW in MC. I know exactly what you mean about good days and bad days (or hours). When things are good, you think, "This isn't so bad." When things are bad, you think, "I can't move her into MC soon enough." I realized I couldn't keep going like this.

DW is still trying to adjust to MC, and she talks about going home. When we're together, she talks about collecting items to take home. When she's kept busy and engaged by the staff, she's in a good mood. When she's bored by an activity, she's very unhappy. It's a roller-coaster of feelings for her and for me. But now at least I can have some control over my own life.

fuzzy socks · May 6

https://alzconnected.org/discussion/72968/i-feel-so-awful

I lovingly placed my husband in memory care 6 weeks ago, after an overnight stay in the ER for severe agitation, hallucinations and attempts to leave our property and find a ride from someone to go somewhere. Our closest neighbor is a quarter mile and our property borders a 100 acre woods. I could no longer control his actions, and after being advised to not take him home on my own, we started admission to a memory care I had toured last fall. Thankfully there was a room available. My daughters came from out of state, we took him home and they spent the next two days helping at home and preparing his room with his favorite, familiar things.
the day of admission they were there waiting for us, we went in, met the nurses, and went out to the secure courtyard, to sit and visit with a few other residents. We left one by one while he was distracted talking/listening and left the facility. Was it the hardest thing I’ve ever done. You bet, married 48 years, lived only at this house, and spent the last 5 years rarely separated for more than a few hours. We have 3 small grandchildren (out of state) and the girls and I felt we couldn’t have them lose both of us. After about 8 days staff felt I could visit without too much difficulty. I went and he was so glad to see me and I him. I have established my exits during meal time , go 3-4 times a week and my heart continues to get a bit lighter because I can rest knowing he’s safe and well cared for. It’s a great expense but my theory is half the cost is for my sanity and health. I know there will be rougher days ahead as things progress but for now all the things he fussed and got angry about at home (lawn mowing, wood cutting, using power equipment) are no longer on his radar and I think that helps immensely.

if you can make that switch to MC sooner than later, I pray you can accomplish the same thing I have, visits where you can love him where he’s at, and that a bit of joy trickles in. And I’m trying so hard to give up guilt, which is not the same as grief. God bless us all.

midge333 · May 6

I placed my DW nearly 5 months ago. 45 years of marriage. I cared for her at home for 9 years and when I placed her, I was drowning. Placing her was the hardest thing I have ever done but I am at peace with it now. She is safe and well-cared for.

Old Iowan · May 6

I know it's hard but taking care of yourself so can take care of him and keep him SAFE IMHO is your priority - I had to place my DW in MC in January but I know she is safe and taken care of - Doing your best is all you can do - BEST WISHES to you & yours!!

BPS · May 6

I took my wife went straight from the hospital to MC (she had a stroke and was in the hospital for over a month). I told her she needed therapy and she was ok with that. It has been a year and I visit most days and she still talks about going home and I go along with her telling her as soon as she gets the rest of her therapy then she can come home. It has been a year and she thinks it has been a couple of weeks. For me I always tell her when I am leaving and that I will be back later. Since she thinks she is there short term for therapy she is OK with that. I never thought a stroke would make things easier. Each situation is so different.

upstateAnn · May 7

You are not guilty. You are grieving.

Traveler18 · May 8

Yes, when there isn't an "event" that triggers placement, the "where" and "when" are really hard. I had prescreened MC facilities so that I had a ranked list and was on the wait lists for them for when I was ready. I received a call from one that they had an opening and said thanks, I'll keep that in mind and hung up. Then thought, what the heck am I waiting for? This isn't going to get better (more down than up days) and it is taking a physical toll on me. So I called back and made a placement 7 weeks ago. It was really a matter of safety (and I love the prior comment on being the one-person MC center!). The weather was warming so he would be more likely to wander outside when he was up at 3 am, he was super restless so I couldn't sleep, he resisted care and I was the hated caregiver in his eyes. I agree with the prior note that I am dealing with grief not guilt. It had to happen at some point, so now is good before I get any more stress-related illnesses. It is a big change and it is hard, but there is a village on the other end who deal with this all of the time and can provide that 24x7 care. I'm not sure who your "we" is in this case - if he is aware, that is half the battle. You can be there for him - and you can be there better when you aren't a sleep-deprived spouse. Mine hated me by the time he moved, but loves me now and talks well of me (and he thinks the aides who provide personal care are crazy - paid trade-off! 😊) Good luck with the transition. Not easy, but one more adjustment to make it the best it can be for this phase of the disease. ❤️

Arrowhead · 8:49AM

DO NOT FEEL GUILTY. Do what you have to do to get him cared for and to keep him safe.

I Feel so Awful….

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