So conflicted and grieving at the prospect of mc for dh

tetwoman · February 23

One of the things that keeps resonating with me is the statement that many caregivers realize that they have waited too long to place their LO in memory care. I don't want to make that mistake.

My DH spends most of the day sleeping, and when he is not sleeping he is staring at the floor. His language skills are deteriorating and I often can't understand what he is saying. He uses words that aren't really words or speaks in a word salad that doesn't make any sense .

But the most alarming is his recent in inability to get out of bed without help. He says he can't move and I have to pull him up to a sitting position. He often needs help putting on clothing - pants and shirts. His mobility seems like it is fading every day. He needs total supervision and intervention re: personal hygiene.And while he mostly uses the toilet independently when he can find the bathroom, he has had 3 or 4 nighttime accidents that had me washing the floors at 3AM.

I have an appointment to see a MC facility on Wednesday. Since I made the appointment, I am racked with grief and guilt and sadness.

I would so appreciate any words of wisdom born of experience you all can give.

thanks to you all, Susan

Phoenix1966 · February 23

Susan, I feel the whole dementia journey for the one suffering from it and for their caregiver is filled with sadness and grief.

I would suggest keeping two things in mind when you visit the facility next week. First, who would take care of your LO if you fell ill or need a long recuperation period after a surgery? If nothing else, having a Plan B for your LO’s care in the back of your mind is never a bad thing. Secondly, nothing is permanent. You can place your LO and change your mind later. A move to MC is not something set in stone.

If you decide on placement, then you can rest a little easier knowing your LO has 24 hour care by people who work in shifts, are more rested than you because of that and can much more easily physically move/help him than you can. You can transition back to the role of spouse/partner and be a more well-rested advocate for his care.

GiGi1963 · February 23

Susan, it sounds like your husband is at the same spot as mine except for mobility issue. Word salad, no interests, sleeping more, angry most days. I put him in MC in early December and took him out before New Year. Visits tore at my heart and guilt about killed me! This cost me $14000 for a month. My point is to be sure before you place. Now I am going to put him in another mc facility. His bathroom misses are getting worse and I realize now it takes awhile for them to adjust to life in mc and for caregiver to give it a chance. Fight the guilt.

jsps139_ · February 23

I guess you have to think about … what would happen if you couldn’t get him out of bed? … Do you have the strength to lift him without injuring yourself? It would be better to make the decision before that happens.

I’m hoping to care for my DH until I can no longer do it physically (lifting him is not an option - he’s 6’1” and I’m 5’2”), but I’m learning from everyone on here, that it might be best to do it before he reaches that point.

I mean … what would we do? Call 911 to take him to the hospital because I can’t get him out of bed? What happens at that point? Anyone been there?

One day at a time! Sometimes one stress-filled moment at a time!

tetwoman · February 24

https://alzconnected.org/discussion/comment/199318#Comment_199318

thanks for sharing GiGi - so when you place him in the next facility, how long are you going to give it? And how did you explain what was happening ? Did you pack a bag of clothing? Did you just arrive and then say "sweetheart, you're staying here now?" am I torturing myself with these questions and thoughts? Really, I can't stop crying

sandwichone123 · February 24

https://alzconnected.org/discussion/comment/199339#Comment_199339

If you can't get your loved one up once, you can call the non-emergency line and the fire department (fire and rescue) will get them up, whether from the bed or the floor. The thing is, they can't do it every day, just as a one-time solution.

GiGi1963 · February 24

Susan, prior to placing him in first mc, I took his clothes to his new room and personalized it with pictures, etc. My son helped me by watching hubby for me. On placement day, we had lunch at the new facility then took him to mc unit. They waited for us and eased the goodbye. I was so worried about that part of placement but it wasn't as bad as anticipated. I shouldn't have visited every day. I could see he was becoming more relaxed and I sure was back home. I know I should have given it more time. I have signed up for a month of respite care to see how it goes this time at the new mc. I'm going to give it a week without visit per staff suggestion. It is so hard to see him so emotional and lost. I beat myself up thinking I can stay the course but I just know I'm going down too. Hope this helps.

ghphotog · February 24

We all sound so much alike. We are doing our best in an extremely long and difficult situation but we / I continue to flog ourselves feeling guilty that we may have failed them by placing them in MC.

We grow up all of our lives with the understanding that we finish what we started, we never quit, we never give up, we see it through to the end but then we just can't anymore and guilt rains down like a fog that covers the entire body and mind. We've failed to complete the most important project of our lives, for the most importan people in our lives. . . . . . . . . NO, WE DIDN'T.

I know I did and still do but it's because I love her that I placed her, not to get rid of her, the burden was part of it for sure. I just couldn't keep up anymore by myself and I would lay awake at night thinking what would happen to her if I didn't wake up some morning. She wouldn't survive, she would live in her own filth until somebody came along and checked on us in a month or two and by then would've died in the house as well. It was always too difficult to find someone to watch her when I've I had an emergency of some sort. I don't think I could've kept up with her for one more week. I won't go into the details but between dbl incontinence, contantly checking her pull ups, even in the middle of the night many times. Getting up at 2AM to change her and the sheets and getting her in the shower. Not easy to go back to sleep after that. Dealing with the daily hysterics, I was dying.

I carried her as far as I could for so many years and even after all of that I felt so guilty that I was betraying her somehow even though I didn't have any other options whatsoever, still felt remorseful and I still do but I'm sleeping better and she is being well cared for, so much better than I was doing. At some point you just have to punt and trust the MC to do a good job and so far they have been outstanding.

GiGi1963 · February 24

GH you put into words how I feel everyday. One part of me wants to carryout my vows and never quit while the other part wants to run away and have a couple of good years left. Every day brings its own drama and by the end of day I can barely manage to get into bed to await another day. Like you I don't think I can hang on much longer. Sad that I am not the strength he needs but I hope by placing him I will regain the love we have always shared.

Denise1847 · February 24

I am not there yet but I can see it coming with my DH's decline. Perhaps thinking about it this may help:

Placement in Memory Care is like calling the ambo and letting the paramedics help your loved one because you don't have the capacity to help them. You wouldn't refuse the paramedic's care. Would you?

It is still so hard. We grew up in an age of placement in a care facility was negatively viewed. We carry our past into our present thinking - we are still hanging on to the stigma society assigned and we are still buying it.

I am so glad and proud of you for having the courage to place your loved one. You are suffering from unjust guilt and hopefully will come to peace and an understanding that you did the right thing - that is heroic!

PS: Please remind me of this when I have to place my DH.

GiGi1963 · February 24

Denise, thank you for the kind words. I will be here for you when you need a shoulder. Seems it is more difficult for wives dealing with our husband's because we are by nature the nurturors.

tetwoman · February 24

Oh! We are a tortured, sad bunch - aren't we..............

My sons say that I shouldn't allow myself to be dragged down along with DH. They say that Dad would never have wanted to put me through this, and they are correct. After another night of very little sleep (4 or 5 hours) I am too tired to clean, cook, shop or be patient or even nice. He of course is sleeping all day and I don't want to deal with trying to get him up and awake .

JSPS - I did face major surgery last year and believe that his needs negatively impacted my recovery. Sometimes I think it still does. If I had the same surgery today, I wouldn't be able to handle taking care of him and me.

I vacillate between thinking about how much better off I will be when he is in MC, and how confused and alone he might feel - abandoned. It tears me up. But each day, week, sleepless night, I come closer to making the move when they have a space for him.

tetwoman · February 24

also, I commented to my therapist that I imagine that he would take better care of me and be able to keep me at home if it were I who had the Alzheimers.

She said - Don't put you husband on a pedestal - what make you think that you wouldn't present the same dilemmas to him if the roles were reversed?

Smart woman............

sandwichone123 · February 24

I think we overlook that there are many tools we can use to care for our loved ones. Whether we're finding out about cabinet locks or the best disposable underwear we are looking for the tools to care for our loved ones. Memory care placement is another tool we can use, and we're still caring for our loved ones.

The conversation often seems to feel like we're kicking them out to dumpster-dive behind the Wal Mart, but that's not what we're considering when we consider placement in memory care. We're caring for them with a purpose-built facility, appropriate social and activities, and a full-time staff to meet their needs. Providing this care for our loved ones also allows us to meet out own needs (except financial) as well.

GiGi1963 · February 24

You are right about mc. I am hoping my husband bonds with some men to talk, eat lunch and do activities. Right now he is bored with home and me. He needs more social activities than going out to lunch together. Hoping this change will do him some good.

Jazzma · February 25

I placed my DH in MC two days ago and it is that hardest thing I have ever done. All I can suggest is 1) have loved ones who can be with you for at least a few days after, and 2) LISTEN to friends and family who have enough distance to realize why you had to do it. You can't judge how hard all of this has been on you. We all want to stay together 'til death do us part' but it is simply not possible to do with the stress, sleep deprivation, sense of loss, anger, and even just plain boredom. Do not blame yourself.

I will grieve the loss of my husband for a very long time, even though he is still alive. Now that he is in a safe place I can begin to heal myself, and I can still visit him any time. My friends and family have kept me alive through this horrible process. Accept any help that is offered, don't be afraid to fall apart in front of anyone. There is more help around you than you may realize.

I wish you the very best, and wish that I could be there to give you a hug and tell you that it will work out. It will. It will hurt like hell, but it will get better.

tetwoman · February 26

Thank you so much for your comments Jazzma - I get a lot of strength from all of the folks in this forum -

I have an appointment to meet with the admissions director at a mc facility in 2 days. If there is an opening, I will take it right away because it's not a matter of if, but when. I fear he will fall and hurt himself in the house and every day he seems to lose more mobility - especially in the morning, needing help to get out of bed and get dressed. If there was hope that things would get better, that would be one thing .... but things will only get worse. And I also have a responsibility to my self and to my children and grandchildren to be here for them too. What a tough road we all have to trod.

M1 · February 26

Two years in to a very tough placement that continues to be challenging, I would reassure you that it's not the end of the world, at all. Most adjust quicker and better than my partner has, and despite that I know that it was the right thing to do, really there were not other alternatives. Don't despair, and let us know what happens.

tetwoman · March 1

update: The mc facility was surprisingly very very nice. Clean. Didn't smell. 8:1 ratio of residents to staff. Doable financially for me. One of our sons came with and was very pleased with the place. They are holding the bed for my DH. It's the only mc facility in the county or the next county closer to me and the county I live in has one an hour away but through winding 2 lane country roads. So I dropped off the medical forms at our doctors office on the way home. Got the TB test today. Interview with admissions tomorrow via Facetime. TB test to be read on Saturday. Medical forms faxed over on Monday, and placement sometime next week.

I know we are lucky to get the only male bed around. I know it must be done for his safety and mine. We are going to tell him he is going to rehab to get stronger. Both sons are coming with me, But oh! I dread the prospect of leaving him there, and I cry cry cry.

Howaboutnow · March 4

@tetwoman -

my thoughts are with you. I know the lead-up to move day is torturous. I do believe our imaginations are actually harder on us than reality. Cause i didn’t imagine i could survive it, not how my mind was talking to me, the scenes my mind played out, the tragedy and pain of it all. But somehow i did. I didn’t escape any of the pain, didn’t try to avoid it or block it. I accepted it as part of making the right decision for the man i loved.

If the move goes forward for your DH, you’ll see each morning rise everyday after placement too. I promise 🙏. Each full day won’t feel good, you may doubt yourself, you may break down at unexpected times, and you may actually find yourself smile or laugh again when you felt like you lost the ability or energy. And those latter times will increase.

ghphotog · March 4

Placed my DW a few weeks ago and was the hardest thing I've ever had to do but she seems to be adjusting fairly well but the staff tell me she's very emotional in the morning and early evening, as she was at home. She cries a lot calling out for me.

Placing them in MC is both relieving and heartbreaking at the same time but sometimes it just has to be done. My heart is heavy when I think about her crying and looking all over for me.

tetwoman · March 4

update: On Saturday we ended up in the ER as DH couldn't walk down the stairs, didn't talk, and couldn't stand. He was admitted and with all the tests - CT, Xray , blood and urine - can't find anything wrong but for the fact that he is not oriented to time and place, isn't walking and hasn't eaten in 2 days. I am afraid that instead of MC we may be headed to hospice. It's still a question as to whether Medicare will pay for the hospital. I have asked that they stop routine blood tests unless he spikes a fever, and that they only give fluids for hydration. I was supposed to go to the MC facility tomorrow to pay and sign papers etc, for entry on Thursday but I guess I'll put that all on hold.

The house is so so quiet. It's unbearably sad.

mrahope · March 4

Oh, dear. I'm so sorry to hear of your DH's decline and illness. I'm glad you've been able to act on his behalf to stop any unnecessary procedures. I'm praying that neither of you suffers for too long. I do think it's surely a good idea to get hospice involved. They may have ideas to increase his comfort that you have yet to pursue.

Hope that you find a way to come to peace with whatever is next. Praying for you both...

Ed1937 · March 4

I'm sorry he had another setback. I know that's hard for you to handle. But I don't think you need to worry about Medicare paying their share. Even if you have an advantage plan, they still have to honor everything that normal Medicare covers. Please keep us updated.

Carolyn4255 · March 6

My DH is in the early(ish) stage of his dementia journey, so caring for him at home isn't untenable as of now. I have the financial resources for MC (as long as he isn't there for years on end at which point I'd eventually run out of money). But I know that when the day comes to move him, it will be soul-crushing for me. The guilt and worry I'll feel will be off the charts. And there's no preparing myself for this. Having the advanced knowledge that MC is most likely my husband's destiny, it won't make it any easier when the day comes. I don't know how people get through it. I really don't.

tetwoman · March 7

another update: DH started recovering in the hospital and today we moved him into mc. It doesn’t matter how I feel about it, the rational part of me knows that I can’t continue to take care of him so for now I am trying to not dwell on him.

you all are the best support group EVER! thank you everyone

So conflicted and grieving at the prospect of mc for dh

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