Placement, guilt, identity lost

ARgirl

Placed DH yesterday after over 11 years of early onset disease. So many factors, many discussed here, sealed my decision. Was asked to give him a few days to settle in, but call whenever I wanted. I know I made the only decision I could, but I am concerned about myself. Guilt, sadness, crying, emptiness after 40+ years together.

Where do I begin to rediscover my identity as a person, not a long haul caregiver? Any suggestions on how to restart a life with a spouse in memory care? Suggestions on visiting? Just any advice would be appreciated, cause right now I feel just horrible and empty. Thanks for listening.

Ed1937

I'm sorry it's so hard. But I know what you're saying. I lost my wife after 64 years of marriage, and I had/have some of the same emotions as you have. It is now going on 11 months since she died, and I'm just now finding a few things that I might actually want to do.

About the only things I might suggest is to get in with other people, like in a church setting, a senior center, or anything else you can find. Maybe breakfast with "the girls", or just meet to walk or get some other exercise. Anything for you to get some "me time".

But you have to let go of the guilt. There was a reason for placement, and you have to keep reminding yourself of that.

M1

Hi ARgirl. I know very much how you feel; I just crossed the 1-year mark with my dear partner in MC, and only one week since moving her to a new facility that seems to be a much better fit than where we were before--it was a terrible first year. Be prepared for it to take lots and lots of time, and for there to be long stretches where you can do nothing but grieve and try to keep breathing. The losses are enormous, and they are so ambiguous--you must try to find your way on your own, and yet your partner/spouse is still there, still needs your care and devotion, though there will be little to no reciprocation. The house is going to feel very, very empty, and while there is relief in not facing the 24/7 vigilance of hands-on caregiving, you will miss your spouse and the life you had; an empty house can be both comfort for the familiar and sorrow for the loss. I have barely found a way forward. All my time and energy has been devoted to surviving this year and since January, to making a facility change (hope you do not face that, but if you find it's not working, don't give up, is all I can say). I am only now beginning to think of ways I can try to move forward myself as a person. It has taken everything I have to keep the basics going and like Ed, I have only recently tried to make any plans. I am anticipating full retirement in about a year, and have put my name on a waiting list to potentially take a master gardener class starting next winter. That's it so far. I have done no cleanout of her possessions or moves to downsize (will definitely eventually be necessary), nor do I have any interest in casual socializing. I have stayed in touch with only family and one or two close friends. Having young grandchildren has helped. They are still at the age where they are glad to have me around.

You asked about visiting. It will have to be play it by ear. Until this recent facility change my visits upset my partner, and I saw far less of her during the last year than I would have wanted. Now, I am basking in being able to go nearly every day and having enjoyable contact again. So much of whether to visit will depend on his stage of dementia. If he still responds to your presence (positively or negatively) that's one thing. if he doesn't, I can't speak to that---we are not there yet, but there are others here who can. Beachfan, who just lost her husband about ten days ago, had him in MC for over a year and he did not seem to respond to her visits with any recognition. So there is not a one size fits all answer to that question. But guilt should not be a factor.

But there are many here on the boards with spouses in MC, so we are all here to support each other. I wish you well, can only encourage you to be gentle with yourself.

Dio

ARgirl, ditto everything Ed and M1 already covered. I just placed my DH 3 weeks ago and am grappling with the aftermath. M1 and Jo C. provided very sound advice and tips in another thread regarding visiting.

As for rediscovering your identity, I think the mere fact that you asked this question means you probably already have a very strong sense of selfworth and selfawareness. If there are things that you have enjoyed doing but haven't been able to, I'd say now is the time to just go do it! Life's too short. Reconnect with friends old and new. Reach out to one or two friends for coffee, breakfast, lunch, dinner, or just a walk in the park. If no one is free, go to your favorite place or one that you've always wanted to dine at and enjoy it! (I really enjoy dining out alone once I got used to it.) Did you have hobbies prior to being a caregiver? If so, start them back up. Join a hobby group or sign up for a class. Check out your local senior centers which also have activities and trips. Spring is approaching, so go to a botanical garden and enjoy the blooms. Missing any theatre or art shows? Buy a ticket and go. (Honestly, I think I have way more things to do than I have the bandwidth for.)

Right now, just looking at all the things that need to be purged overwhelms me. So, heck with it. They'll have to wait and take a backseat. I'm taking care of me first! You can, too! But guilt will creep up. Thankfully, I kept a journal and listed all of the reasons for having to place DH. Every time guilt crept up, I would turn to the page and remember why it was the right decision, not just for me but both of us.

ARgirl

Your comments, compassion and kindred spirits enriched me today. I have felt everything you describe. I will take your suggestions and guidance to heart. It was lovely to have a 5am cup of coffee quietly on my back porch today. I will take it slow, cry when I need to, grieve, and support him in MC. And yes, a journal will be my next step to reflect on all of this tragic journey. So many times, we say the same thing....this disease destroys wonderful people, families and lives. But there has to be light somewhere in this dark tunnel. Onward with my day...you guys are wonderful!

M1

I forgot to mention a journal, glad you thought of it and others suggested it. I started one when my partner was hospitalized last year. I have not reread it at all and don't know if I ever will. But it has been an outlet through this very difficult year. Hope it helps.

Ernie123

No easy answers here. My DW had to be placed 4 years ago after 7 years at home. I have found each year passing a bit better but I still am terribly lonely and still have unexpected tears, like upon hearing a certain song that evokes memories. I am a slow learner I guess. My suggestions would be to get out and stay involved in any social group that interests you. I spend a few hours a day at the memory care facility and have become a sort of volunteer in the unit, unpacking supplies, doing minor repairs, building little side tables, assisting with the tea parties and bingos. There are only 14 residents and the PSWs are like family to me now. My wife is now in a wheelchair and not too responsive so doesn’t “ visit” too well. If I didn’t have that daily social contact at the unit I would go crazy. The other suggestion would be to seek out Alzheimer’s support groups that meet in your area. Talking informally with others in similar circumstances is a great help to me, much like this forum. Be prepared to feel better after time passes but dips into sadness will not be uncommon. Good luck and keep us up to date with your journey.

toolbeltexpert

Argirl I placed my wife about 10 months ago and you described exactly what I felt and at times still do, the unexpected little things pop up and bring tears happen, I have saved some of the videos from my cameras as a reminder and had written a list of the things that caused me to chose to place my dw of 44 years. Guilt yep it trys to get me but I know better. Like you life isn't over for us. I with met someone yesterday from a dating app. It was agreed that it was a social thing and everything is out in the open. I need to have that socialization. I didn't stay on the dating app long though. Please do not construe that my love has changed for my dw it never will. But I am losing her a bit and piece at a time. So I have kept busy that has keep me from thinking it was hopeless. I sold our farm and bought a new house near the mcf,I visit daily, I have not missed 1 day since placement. There not all good either learning when to leave takes time and it's different for every, M1 and his dw are a perfect example and I applaud M1 for persevering and making a bold move that has worked wonders for him. It's so different for each of us. So many have said things I would have said. I have a church family that has been faithful to visit dw even though it's a 40 mile ride one way and they listen to me when I just need to talk. Both our families are a 1000 miles away and we have no children. I haven't gotten rid of much of dw stuff but that is a definite thing that needs to happen, she's not coming home. Keep posting let us know how your doing we are all here for you.

Stewart

Hellogoodby

The guilt is real. But you already said there were many reasons it was the only possible decision. Hopefully that fact will help you get beyond feeling guilty to feeling proud that you made the best decision despite how hard it was. Everyone’s situation is different, and I have no experience with establishing a life for myself again (yet!). But I know that my wife is not only safer than she was at home, but her quality of life is much better because she has her own social life now. You likely can find similar reasons why you should feel pride instead of guilt. Loss, yes. Embrace that. For the first six months I felt that every day when I visited my wife I lost her all over again. But over time (with therapy) I’ve accepted that the disease has its own course that I can’t affect. All I can do is take care of my wife. But just as you should put your oxygen mask on before helping others on a plane, remind yourself that you can better care for your LO if you first take care of yourself. Best wishes for you.

ghphotog

Placing my mom tomorrow and wife to follow soon probably. My mom doesn't know it's a locked MC facility. She will not accept she needs more help than I can give her. My wife is deep into Alzheimer's meaning I can't take care of both anymore. Tremendous amount of guilt right now for me and more so once my mom realizes she can't get out.

Ed1937

Gh, you've been dealing with both of them for quite some time now. It's hard to believe you've lasted this long. You are doing the right thing, even if there will be emotions to deal with. I'm praying things go well all around.

M1

will be thinking about you. I know how hard this is.....hoping there will be some acceptance for all involved.