I just don't know what to do.

Jazzma · April 19

Those of you on this site have probably seen me post several times. I am all over the board. As background — my DH was diagnosed with Alzheimer's 6 years ago after 4 or 5 years of symptoms. I quit my job and stayed home with him, and things went pretty well until three months ago. It was tiring, I couldn't get much time alone, but he was sweet and loving almost all the time. Three months ago he developed pneumonia, followed by a week in the hospital (4 days of that in the ER) where he became violent and delusional). I brought him home from there but had to put him in memory care within the week because I couldn't cope with the new behavior. In hindsight I think most of that behavior was the result of over-medicating with Seroquel and Trazodone that left him in a sleepwalking state much of the time.

I thought memory care would be a relief, but I was beyond devastated. I still am. I can't explain how much it tears me apart. Some times I can't breathe because I'm so sad.

Today I took him out of his current facility because another place closer to home, less expensive and highly rated had space available. We still need to go through the assessment prior to placement. I feel like I just can't do this. I can't leave him in facility again. I've never been suicidal in my life but I have those thoughts now.

My family insists that I have to face reality. His neurologists says that he can realistically stay at home for the time being with adjustments to meds as necessary. He has never been violent at home. He does 'sundown' and gets confused, delusional and sometimes agitated buy that's manageable and he can be redirected.

I don't know what to do. I just cannot stand putting him 'away,' even if it is the best thing for him. I don't mean just that it's hard — I feel like I physically and emotionally cannot do it.

I know many of you must have gone through this. How do you survive? How do you make the 'right' decision and go on with your life? Is MC the 'right' decision? I am a mess.

Jgirl57 · April 19

I am so sorry you are truly struggling. Your health has to be a priority if you are having dark thoughts. My HWD/Alz is still at home with me but I have toured facilities for if and when. I think you have to weigh what home help you would need to have him remain at home vs. a facility. There is no right or wrong choice because this horrible disease is predictably unpredictable .Ultinately it is a terminal illness and he will pass away. There is no stopping this train. Please do what it takes to balance out what both of your needs are . The new facility seems like it is worth a shot. If it doesn’t work out, get the help you need at home to enjoy your remaining years together. Sending hugs to you

M1 · April 19

Jazzma, i too am sorry you're having such a difficult time, can you call your own doctor for some urgent help? When you're in crisis is not a great time to make such a big decision. I would say go ahead with the new placement assessment so that you don't lose the opportunity. They haven't even completely accepted him yet, correct? One step at a time.....

midge333 · April 19

Jazzma:

I am sorry you are going through this. Please seek help for your own mental health. It is like the oxygen mask on the plane. Put yours on first and then help the person next to you. You need to be in a better place to make good decisions for your DH. I would go ahead with placement. It is not irrevocable. Get yourself in a better place and then reevaluate care at home vs. MC. We are all doing the best we can. Be kind to yourself.

JeriLynn66 · April 19

Jazzma, I'm sending you peace and light and rest in your heart and mind.

ghphotog · April 19

So sorry you are feeling this way as I also have but please hang in there.

GiGi1963 · April 19

Jazzma, I also feel guilt placing my DH in mc. I took him home from the first facility because he seemed emotional and lost. My guilt was overwhelming. He was home again for 2 months. During that time he started having incontinence at times and became angry and threatening to me and our little dog. My children convinced me to try another mc mainly out of concern for me. He has been there for 2 months and seems content and feels like he is helpful everyday. He is in excellent physical shape but his memory is basically gone. I love him and feel sad at what we are missing in our golden years. His acceptance of the new facility has eased my guilt. It is hard to be his caregiver when you are old, slower and his needs will only increase. My advice is to try the new facility and take care of your mental health. You will be able to be the wife he needs. Hugs.

Beachfan · April 19

Jazzma,

I am so sorry you are having such an awful, conflicting time. As others have said, you are no good to him if you are damaged yourself. I was “lucky”; my kids made the decision for me. DH was relatively easy to care for, but the family could see me going down the rabbit hole of 24/7 caregiving, isolation, exhaustion, avoidance of family get togethers- - a 30 day respite turned into permanent placement.
Placement does not have to be permanent. But as long as you have the opportunity, you can take some time for yourself and regroup. With time and rest you can evaluate your situation and make more rational, thoughtful decisions. Wishing you the best. It’s so hard.

Denise1847 · April 19

Dear Jazzma, i feel your pain. I truly do. My DH was raised in a foster home because of a terribly neglectful mother. I know eventually I will be forced to move him to memory care, but I hate the thought. I just don't want to be putting him in a home like his mother did. My long-time friend and mentor encouraged me today to stop guilting myself for his mother's actions, think about what will happen if I die before him, and to recognize that I have a responsibility to take care of myself and not just him. I don't know if any of these thoughts help you. I sure hope that you find peace in this.

Jazzma · April 20

Thanks so much to all of you. I still have a pollyanna idea that somehow he can live at home and we will be okay. I suffered serious separation anxiety as a child when my mother died, which is triggered by this move. I know the issue is with me, and my problems, rather than with my DH. I hope that I will be able to make the decision for him, as I should, and deal with my own emotional issues. Family is here to help.

This just sucks so much!

Dio · April 20

Placement is the hardest decision and we've all felt the crushing guilt. So my therapist offered this view: It's because of the love we have for our LOs that we are providing him/her the best care possible through professionals, where the MCF becomes an extension of ourselves. In my case, I found the right MCF for my DH. She asked me to answer honestly whether I am capable of caring for him if I took him home. The answer was a resounding "no!" She said, "then the guilt must take a backseat."

Jazzma · April 20

https://alzconnected.org/discussion/comment/206359#Comment_206359

Thank you Gigi1963. You explained my feelings really well. My friends and family are also concerned that having him home will take a toll on both of us. The new MC people explained to me that it's like taking a child to their first day of school: They're scared of change and want to stay with you. You are the adult and you have to make the decision that is best for them, even if it's hard for you. That rings true. I still dread the day he moves in there.

GiGi1963 · April 21

I think the MC facility gave you a good example. I was a wreck knowing he'd miss me and have a hard time letting someone else do all the things I did daily. He fell into the routine very quickly and enjoys socialization and feeling helpful. He has not mentioned going home. Enjoys our visits and going out for lunch and ice cream. It has turned out very well so far. I'm still sad when I leave because I miss our life and the house is lonely. I am sure you will do what is best for you and your hubby.

rocko · April 28

https://alzconnected.org/discussion/68940/i-just-dont-know-what-to-do

I am so sorry Jazzma~ However, I easily could have wrote your post. My DH went into Memory Care last week after a month in the hospital with pneumonia . He was diagnosed 11 yrs ago with Vascular Dementia and I have been his 24/7 caregiver. Today my heart aches and I miss "us" …..

I just don't know what to do.

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