My lifeblood is in MC

AnderK · September 24

Hi all, I have not been of much help lately, have not been able to post. As of last Thursday, my Guy has been in a memory care unit, He had a paralysis in mid August, went to hospital for a week, then to a TCU for several weeks.. Now to a memory care facility that, actually, I could live in for $500 more a month. Diagnosis was heaped on diagnosis. Alz, vascular dementia, parkinsons, and perhaps Lewey Body. He has been out of our home for over a month.

I was so worn out from being a care taker, that I think I gave up on him too soon. Is over 3 years to soon. Too soon for washing clothes every day, of spraying down chairs to prevent odor, of being scared that one day, I won't be able to do that. of not seeing my friends for more than an hour before I have to get home, or that, if he falls, I won't be able to pick him up?

But, on the other hand, my home has some peace. I don't start at any sound, wondering if it is a fall, or the cane, or the stair lift, or just a spoon falling on the floor. I have filled his studio apartment with his favorite art, and things.

But he is so unhappy. He doesn't leave his room, except for in his mind. I refuse to give him his ID or credit cards. And that causes an argument. That I am not there, that I don't support him, that I don't listen. He talks about the fact that I am not there…but I need to pay bills, clean the half of the house that I live in, now. Put the fricken boat to bed for the season. I am taking this opportunity to see friends for more than half an hour.

But everytime I see him, I leave crying. I want to bring him home. So sad.

So, I should have lead with this. Should I just leave him there for awhile, without my daily visits? I can't just sit there and listen to NCIS. Should I do, what seems to me, one more step in abandoness?

Thanks, It is 5:30 in the morning, and I am going back to bed for an hour or so.

My heart us broken, my mind is conflicted. I just want to go get him, bring him home.But, that would be at great sacrifice to myself.

M1 · September 24

Give it time AnderK-and I mean lots of time. No, don’t bring him home. He needs the support and controlled environment that he now has. You did not “give up too soon”—-how on earth could you possibly think that? What you were doing was unsustainable without further support.

I get your DH being unhappy in MC, my partner has never really adjusted emotionally and daily tells me she’s ready to leave. We’re now in our third year, and only now that she is in hospice and mostly bedbound can I visit daily and expect that she will be glad and not angry to see me.

So it is very early days. I hardly visited at all in her first year, and then only if I had someone else with me and stayed in public areas. If we were alone in her room she would inevitably light into me, and this was somewhat curtailed if others were around.

Please keep us posted how it goes.

White Crane · September 24

AnderK, You have not abandoned him even if it feels that way right now. You are doing what you need to do to get him the care he needs. You have been a wonderful caregiver and have done everything you could to take care of him at home. Now it is time to let others take care of him and for you to get some much needed rest and restoration. You need to take care of yourself too. I know it hurts and it's heartbreaking. I'm right there with you. My DH has been in MC since January and I still cry. And he still wants to come home but I know I can't bring him home. It breaks my heart every day. Please take care of you now and if that means limiting your visits then that's what you need to do. Give yourself time to adjust to this. Post on this forum, call understanding friends, do something that makes you feel nurtured. Day by day you will get through this. We are all here for you.

Brenda

easy23 · September 24

Hi AnderK - I understand your conflict. My husband has been in MC for three weeks now. I have been visiting every day for the past two weeks and he has been pretty good at letting me leave without asking to go with me. I feel so guilty leaving him there, but I don't see any other options. He belongs there.

Yesterday his sister visited and he had her call me twice. Both times he was demanding that I come get him. He wasn't nice at all. It was a reminder of what I would have to put up with if I brought him home. Things are quiet here at home, but so much better than living with the uncertainty of what will happen next.

I think I'm going to skip visiting today and see how he does. Maybe I'll cut back to three times a week. I think we need to give ourselves time to adjust, It's not easy. Stay strong!

Phoenix1966 · September 24

I think what you are really feeling is grief, disguised as misplaced guilt. Your relationship has changed because of this awful disease and you won’t get that back. Give yourself time to feel that grief and don’t make any hasty decisions right now, such as bringing him home from MC. Give both of you time to adjust to how things are now, versus how they won’t ever be again. You might even consider not visiting too much in these first couple of weeks, allowing your LO to adjust as well.

Take a breath, stop mentally beating yourself up for a decision you made for the sake of both your health and his and give it time.

BPS · September 25

My wife has been in memory care for about 6 months and I still have those feelings, but I have started to realize what I miss is the times that will never be again. My heart wants what was, but then I stop and think what that actually means on a day to day basis and I know It is not only better for me that she stays where she is but it is also better for her. She doesn't always like it there but she didn't always like it here either.

SDianeL · September 25

ditto what others posted. Don’t bring him home. You are still his primary caregiver making sure he’s well cared for. When my husband asked to go home, I told him when the doctor said so. Then I changed the subject. He accepted that explanation. Some people tell their LO that the house is being fixed, remodeled, etc and they can’t come home yet. Keep repeating. Stay strong. Get some rest.

LindaLouise · September 25

All these comments are so true and heartbreaking. My DH has been in MC since May and with the relief of no longer 24-7 trying to keep him in the house, not sleeping more than a couple of hours or less at a time, and enduring the agitation and anger and isolation from family and friends - came the grief. Suddenly I was faced with the crushing sadness of losing my DH of 47 years. Caregiving had been filling every space in my head for several years, and when he was placed, there I was, alone, for the first time since I was 20 years old. As an ALZ spouse, I've found the typical outpourings of support aren't there for us as we lose our spouses, and even worse, I've been told stories of those who kept their DH or DW home until the end - which triggered the guilt. Nothing about this is easy, and I'm so grateful for all of you here who understand and share your experiences. This is beyond hard on every level - but thanks to all of you here for your support as I don't know how I would make it through without you!

AnderK · September 25

https://alzconnected.org/discussion/comment/223802#Comment_223802

Good answer. When the doctors says so. Thank you

AnderK · September 25

Guilt is so invasive. And so incredibly debilitating. Thank you.

Silverplatter · September 25

So sorry for what you are all going through. My DH is home with me for now. He has AD and I keep hoping God will give me a sign that its time for a home. All they say online is you will know. Well that's not true in my case. I admire all of you. Please do not feel guilt. We all do the best we can.

AnderK · October 9

I have been skipping days, and yesterday I spent the whole day in bed. Did some meetings this morning,lunch, then went to see him. It was hard, because he was glad to see me, and said how much he misses me and says, that the only thing he wants is to be with me. We took a nap together, and when I went to leave, he just laid on the bed crying. I can feel my heart literally breaking.

And then I remember that last Friday night he thought he was sitting on his boat when I called him. That he doesn't remember how to answer the phone, sometimes. That he puts his urine soaked clothing in the waste basket. That he HAS urine soaked clothing....

Man I hate these diseases.

Sorry for venting

Kathy

M1 · October 9

I know about the days in bed. And i know about the begging to be with you. It's okay. I'm so sorry. I'm glad you gave us an update. Does he need the phone Kathy? At some point it's going to be time to ditch it....sounds like you might be close. Ironically I found that closing my partner's cell phone account was very emotional for me. End of an era.

fmb · October 9

You may find this article helpful:

https://www.alz.org/media/greatermissouri/guilt_and_grief_when_moving_your_loved_one_to_a_care_facility.pdf

AnderK · October 9

https://alzconnected.org/discussion/comment/224997#Comment_224997

Yes, M1. I think he needs the phone, but maybe that is my need. We have a call button on the ones that we have where I can video call him...although I get nervous when he doesn't answer. It allows me to day good night or morning, and also allows his sisters to talk with him. Last night he was all laughing and smiling. Perhaps I needto schedule visits better, to correspond to when his meds kick in. Thanks! Kathy

AnderK · October 9

AnderK · October 9

Thanks. I just skimmed it quickly and will read it in more detail when I have my cuppa in front of my computer. Kathy

My lifeblood is in MC

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