Would he be happier?

Gig Harbor

My husband is progressing on his journey. He can walk 4 miles but not alone as he gets lost. He can dress himself but would wear the same clothes forever and gets mad when I suggest changing. I sneak them out when he is asleep. His memory is 10 seconds and then has to be reminded about what was said or asked. He has to be told to take a shower, brush his teeth and shave but he is still fully continent. He has no hobbies and no longer wants to help me with yard  work. I hire it done because he would walk out of the house while I was occupied. I know he is bored but I just don’t have it in me to be a social activities director. He really doesn’t recognize our daughter or grandkids by name but does when he sees them. He still recognizes a couple of old friends but only because he sees them each week. Some days I think he would be happier living in a memory care where there was activities and lots of people around. Rides have always been a great diversion but the other day almost as soon as we left he kept asking when we would be home. We stopped at a state park to go for a walk on the beach and he wanted to go home. He is in great physical shape for 83 so he could live for another 5 years and I can’t imagine him being confined to a memory care for that long or paying for one for that long. Sometimes life sucks.

JulieB46

I am in a similar boat. Still continent and knows who some people are, but gets anxious and panicked often and wants to go home( we’ve lived here 16 years.). He is physically fine, but can no longer complete simple tasks and I catch him with no underwear or sweatpants inside out or backwards. Two different shoes, shirt on backwards. Same clothes and not showering unless I take him to the shower and help him.  I’m having someone come in for part of the day while I’m at work, mostly because he is bored and I don’t want him to get lost in his panic. I don’t want to place him but if it keeps progressing at this pace, I think I’ll be making that decision in the next year.

markus8174

Gig

 I can't be sure of anyone else's journey through the misery this disease causes.  I know for me and my DW, when we stopped having any positive time together, when every interaction was an exercise in manipulation to get her clean, changed, dressed, fed... It was time for me to make the decision about long term placement. I still don't quite understand the distinctions between Memory Care, Alzheimer's Care Unit, and Nursing Home. For my beloved, between the blatant incompetence of her attending doctor on admission, the complete shutdown of family visiting for most of her 1st year there, and a profound lack of support from the staff, by the time I was able to see how she was doing, "happier" was no longer a large part of the consideration. She smelled better, was dressed neatly, and at least looked better than I had been able to manage the last 18 months she was at home. The answer is- is taking care of your DH's progressively demanding needs serving any benefit for him or seriously detracting from the joy you have in the memories of your life together? I still am plagued with overwhelming grief over having to place my better half into the care of people that had no real care whether she was happy or sad, lived or died, but were paid by the hour to do the mandated minimum for long term care. Still, she was constantly angry and unhappy in her home (often not knowing she was in her home) and was really neglected from what care I couldn't accomplish here. We both had begun disliking each other and it was moving towards real hatred at times. There is only so many times you can say to yourself "It's just the disease doing these horrible things, not my beloved." When the disease takes over every minute of the day, your beloved may as well be in long term care because you are only spending time with the disease.

M1

Gig and Julie, I think we’re all at a similar stage of the disease and in our caregiving. I also am contemplating placement in a very ambivalent way. Markus, I always appreciate your posts. I hope things are on an even keel for you for the moment.

JulieB46

M1, you are right about the possibility of moving forward with placement.  Markus has gone through what I fear is right around the corner.  What I can’t believe, is how slowly and yet so quickly this disease has progressed and completely changed both of our lives and futures. I know I fluctuate between, “I can’t do this much longer” and, “Maybe he was better today?”  I sometimes ask my good friends and family to be straight with me about what they see. You know we don’t see things as clearly if we never are away from it.

Gig Harbor

Thanks everyone for your input on placement. I have always thought that the final push over the edge would be incontinence that would have him using the entire house as his bathroom. Now I think it might be sooner. I find myself angry much of the time but often I am angry that this is my retirement. I worked a few years longer than I planned because he had beginning Alzheimer’s. Because of our age difference he has been retired for 21 years and I have handled or orchestrated all household and financial dealings and I am tired. I wonder what it would be like to have someone ask what they can do for me today or tell me to sit down and they will cook me a meal. It makes me sound selfish but I guess that is what it is. I think that to maintain my sanity I will place him sooner rather than later. When it happens I think he will forget our home and this life within the week.

M1

I’m ready to make my initial inquiries today, there’s one place 30 miles from us that is head and shoulders above anything else available, and they have a home care program too, so that’s my starting point. Every little thing is now so burdensome that something has to give. I spent an hour this morning looking for the truck keys because she mislaid them. She argued with me about having some mulch delivered (“I’ll go get it.”). Argued with me again about hiring some outside help (“I can do that.”). Fed my 50 lb. bag of chicken feed to the wild turkeys. Put my things I was defrosting for tonight’s dinner back in the freezer. I’m exhausted before I even start. And then when she realized I was frustrated she told me she was going to move back to her hometown in Texas (I think that’s her version of the “wanting to go home.”).  That last is so impossible and so beyond her executive function that I just told her to let me know when she had her plans made.

So it will help my sanity if nothing else to make some initial inquiries.

DrinaJGB

It's the incontinence issues now going on 12 years since viral brain injury.

 It's  OCD behaviors which are constantly annoying but manageable at least for now. It's not being able to rely on that great relief of having someone to talk to about daily things and things only you and your LO knows about.

You know--that one person who knew you better than anyone else.Do you even remember that?

  It's always putting their needs before yours---until you start to disappear completely.

Beachfan

Gig Harbor wrote:

. It makes me sound selfish but I guess that is what it is. I think that to maintain my sanity I will place him sooner rather than later. When it happens I think he will forget our home and this life within the week.

Gig (and M1 and anyone else contemplating placement), 

If you are selfish, or feeling selfish, you have a kindred spirit in me.  It took my kids ganging up on me to realize where my life (what’s left of it) was headed and it wasn’t pretty.  DH has been in a MCF since November and although I miss him and love him with all my heart, I am a better person for having taken that step.  I am “lucky” in that he no longer knows me or kids or grandkids and thus, doesn’t miss us or his home.  I feel as though I’m rediscovering normal life.  Now and then, I have a fleeting feeling of selfishness, but it passes when I enjoys concerts, sporting events, birthday parties, family get togethers- - all the things I was missing over the past many years.  He would want me to have a life free of the resentment that was increasingly creeping in due to the rigors associated with his ongoing care.  He is well cared for and content;
I am caring for myself and content.  That’s the best I can hope for for the both of us.  Follow your heart, but listen to your head, do exhaustive research, and pray for guidance, if you’re so inclined.  It will all work out.  Best wishes. 

M1

Beachfan your post made me sob.  I guess that is just indicative of that yes, I really need the help at this point.  I have to figure out someway forward with whatever changes that requires.  The thing holding me back is that my partner does still know me, knows her home, and I fear would feel completely betrayed if I place her.  It would be against her will, and I think she would literally quit eating and die.  So I have to see what other alternatives may be out there.

Beachfan

So sorry, M1,  it seems I have hit a raw nerve. I apologize.  I tell anyone who will listen that the one consolation I have in placing DH is the fact that he no longer knows us, he doesn’t know or care where he is, and I can come and go with no reaction on his part. On Monday, when I was visiting DH, a female resident received a call from a family member. She is a sweet, cheerful lady, who always makes it a point to stop and tell me a little anecdote about DH. She cried silently throughout the call and my heart broke for her.  She was clearly missing home and someone.  I can understand your reticence in even remotely thinking of placement when your partner is so aware and so present.  I didn’t have to cope with this. It’s good and it’s bad.   I hope tomorrow is a better day for you.

Gig Harbor

Thank you Beachfan! I think I will feel the same way as you do when I place my husband. My friends who have placed their spouses all tell me I will know when the time is right. M1 one of my friends came up with an easy way for placement. She told her husband that she had to have many tests done and the doctor wanted her in the hospital for at least two weeks. She assured him that she had found someplace really nice for him to stay with good food and activities. She did not visit during the two weeks but did talk to him on the phone. When she did visit he did not ask to come home. He had made friends with another man and the staff kept them busy giving them jobs to do. He somehow thought she had to go to work each day when she was ready to leave so she played into that excuse.

markus8174

A lot of this thread has turned into why I admitted my loved PWD, and how it was better/worse. I've posted my 2cents on this before. The last few months at home were constant anger and sorrow. Often, she would just sit in the car for hours and wait "until I was ready to drive us home". That, with constant incontinence and a rabid refusal to change her incontinence protection wear (I had to throw out most of the furniture and bedding when she was admitted) I don't think I had any choices left for keeping her at home. I fear it had deteriorated to the point I could have been charged with elder neglect the last 2 months at home. It's a little better with her being cared for almost properly by people who can manage her needs. It has been a rough week for me with my DW's long term care facility. She's been there 2 years and my feelings about it have vacillated from "pretty good" to "I've got to get my DW out of that snake pit". I'm leaning toward the latter this week but with her being is a solid stage 6 for the last 9 months I fear a move would be very detrimental for her and I may just be jumping her out of the frying pan into the fire. With Covid restrictions still in place I can't even tour a different facility talk to the staff or see the room she could be admitted to. I'd love to have some support from her(our) children, but they have written her off as a lost cause and will rarely even respond to updates I send them. My life feels over and when my DW gets to move on from the misery this disease has caused us, I doubt I'll talk to any family member again. At this point I can't imagine even telling her children she passed away when that happens. AD has taken everyone I cared about away from me and left me alone and grieving with only a couple elderly cats for support (except for you folks). It feels wrong when I wallow in self-pity, I'm not the one who had their mind was stripped from them. That is, I'm afraid, what is in store for any caregiver struggling to manage a loved one with dementia at home. No right answers, and no happy endings.

Joe C.

Gig, After a long time of considering placement I finally made the move 4 months ago. DW needed help with all ADLs, no longer recognized our home, did not really comprehend our relationship and basically sat in front of the TV most of the time. I had been trying for the past couple of years to keep her both physically and socially active but that was becoming more and more challenging. When I placed DW she acclimated to the MC almost immediately and has never asked to come home. They have provided a level of socialization and activities that were beyond my ability to provide at home. She now has friends and is generally happy when I see her.

For me the loss of the physical presence was really difficult for me to adjust to. I’m so many ways she had been gone from our relationship for quire a while but when she was no longer here it initially hit me like ton of bricks and I am actually still adjusting to this new reality. As Covid surged in late December the MC put restrictions on visitation and were really pushing virtual/Zoom visit. Given the visitation restrictions I made a decision to go to FL for a month since I could just as easily Zoom visit from there. Initially this was difficult for me since it was a getaway DW & I had taken together and there were lots of memories but eventually I settled into it. I was able to go out to diner, music venues, the beach and visit family & friends without constantly being “on the job”! It was refreshing to just have a normal adult lifestyle for a change. When I returned March 1st the MC had lifted the visitation restrictions and I went to see DW immediately. She was happy to see me but she had no concept that I had not been there for 2 months or 2 days. I believe placement, although difficult for me, is the best possible situation for both of us. 

I wish you the best as you struggle with this decision.

Joydean

Gig, I have been asking myself some of the same questions you are asking. What would it be like for someone to just help me once in a while? To even ask how I am doing. When I get one of my migraines my husband tells me “you can’t get sick “, I don’t even ask why anymore because his answer is “who will take care of me?”  He knows I do everything for him, do everything that is needed to run our home, take care of any and all repairs, financial, put out his medication, everything. He knows but can’t understand. That’s the hard part for me. He has no concept that we are supposed to be partners. I can’t remember what it was like for him to get me a cup of coffee! 

I hope things get better for you soon. 

Markus I hope and pray your days get better and hopefully easier for you!