I moved DW to memory care (part 2)



So, that's the background. All of our family and friends were supportive of placing DW in MC, even urging me to do so, reminding me that I had to take care of myself. The conundrum for me was, how was I going to get her in the door? How was I going to get her things to the MC facility? One suggestion was to say her doctor said she needed to be in rehab for awhile. I knew that would never fly. DW would ask, "Which doctor?", "What's the rehab for?", and, most difficult, "Why didn't the doctor talk to me directly?" DW had grown very sensitive about respecting her personhood.
Instead, the ruse I settled on was to say we were going to a "resort" for a few days. She had been grousing that she wanted to do different things, rather than be at home all the time. She was unhappy cleaning the dishes after our meals (that I prepared). She was tired of making the bed or doing laundry. I told her the place we're going to would take care of all that for her. I told her about this on Saturday morning. We packed bags (me, too) on Sunday night, and we went to the "resort" on Monday morning.
I told DW we had a check-in time of 10:00 as a way of forcing her to keep moving in the morning. I told the MC staff that I would arrive in a red car. They should greet us at the curb and take DW's bag. I would say I was going to park the car while they went inside. And I drove home (about 1/2 hour). Much to my relief, that worked out well. Jen was there, a familiar face, which probably put DW at ease.
It's been less than a week. The morning of Day 1 went pretty well, DW was kept busy. In the afternoon she wasn't kept as busy, and she was starting to ask where I was. Fortunately, the folks at the MC facility are real pros and old hands at this, and they were able to deflect and re-engage. Apparently she didn't eat much for dinner, but she did sleep reasonably well, and she ate her meals on Day 2. In the afternoon she was really into balloon volleyball (she's always been athletic), but eventually she tired of that. But she's starting to meet people and develop friends, and I think she will adapt in a few days.
Now, about my reaction. I actually feel relieved, elated, maybe exuberant (for now). I think I compartmentalized my feelings and focused on the mechanics of caring for DW. Leaving DW at MC reminded me of the day I left the Army base where I was stationed and was once again a PFC (proud f*cking civilian). I could breathe again. I could plan again. I could choose again. I have free time again without distractions.
I know DW's absence will kick in at some point, but, really, for years she hasn't been the woman I married. We could not have any kind of substantive conversation. It's sobering to realize DW will never see our house again. I don't feel guilty but, rather, feel like I made a good choice for both of us. I know the pros will take good care of her, better than I could. I know a topic in this discussion group has been, "When is it time to move my LO to MC?" I don't have a general answer, but I know it was time for us. I don't think I could have managed the final week if I didn't know DW would enter MC on Monday. As her condition has deteriorated, it had become that stressful for me.
While I don't feel guilty, there is a part of me that feels like I'm discarding DW, tucking her away somewhere, institutionalizing her. And that's true in a sense. But moving her to MC is compassionate for her and me.
Strangely enough, through this whole journey, I've been relatively lucky. DW has stayed cheerful for the most part. She was never aggressive or violent. She only had one minor wandering incident. She had several got-lost incidents, one of them pretty serious and scary. I knew she had left the house with the dog, and she got confused and lost her way.
Stopping driving was never an issue. She just stopped of her own accord and implicitly let me do the driving. We still have "her" car, and she would often ask whether it was in the garage. I never had to hide the keys, which remained hanging on a hook near the door. The truth is, I'm not sure she would have known how to start the car at this point, and, if she succeeded, she would probably stop at the end of the driveway, unsure where to go.
These are things I won't miss:
- playing "treasure hunt" for glasses and other misplaced objects
- objects not where I left them
- paranoia when DW couldn't find something she misplaced and assumed someone took it
- the endless repetitive questions
- the horrible disorganization of DW's clothing, desk, etc.
- her asking "What are we doing today?"
I learned to pick my battles and not push back on some of DW's odd behaviors: washing the dishes by hand and not using the dishwasher; peeling labels off packages that were going to be recycled anyway; cutting up paper into tiny pieces that I would have recycled whole; using a lot of paper towels to dry dishes and pans, rather than use a dish towel.
Comments
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Thank you for your detailed posts. It is useful as I see many similarities to where I may be headed. I remember early on when we first got the diagnosis, what kept me going was the determination to do this at home. No one in our family was every sent to a facility. The example I grew up with was that you deal with these things in the home… until the end. When my mom got her stage 4 cancer diagnosis, that was her immediate reaction. I want to die in my home. It was not easy, but I was able to fulfill her wish.
However, the other side of this is that for people who can afford it, people with dementia are sometimes happier and better adjusted in an MC setting. The problem I see is that for many of us, the difficulty needs to be unbearable for an extended period before we are willing to try placement.
I am very interested to hear about your visits. Will you look forward to them? How do they make you feel? Will it ever feel routine? Placement must be very hard. Then having to visit, spend time and leave her…. I can't yet wrap my mind around that.
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Very good questions, for which I don't yet have answers. I have been advised not to visit yet, and the staff will tell me when they think it's okay. First, DW has to be settled and develop a routine, and I think she has to be weaned from constantly asking for me. I understand that at some point she has to realize MC is her new home.
Honestly, I don't know what to expect when I visit. I think she'll be happier. They keep her busy. Because she wanted to feel useful, I imagine they assign her little tasks, like putting out napkins at meal time or helping to fold laundry. When both of us were home, she didn't get much social interaction, so having other people around all the time will be beneficial.
I imagine I'll be more relaxed when I see her, knowing that I don't have to endure for a long time all the things she did that irritated me. (That sounds horrible, doesn't it?) We don't have kids, but I imagine it's a little like grandparents visiting their grandkids, where they can enjoy the good stuff and can walk away and not be responsible for all the kids' care.
Placement wasn't hard for me. I knew in the back of my mind that we were headed that way, I just didn't know when. As her mental state deteriorated, I knew it was coming sooner than I thought. I was having a hard time getting through each day because I couldn't answer the question, "What are we doing today?", and I found myself thinking, "I Just need to make it through another hour or two before dinner," for example.
Because she was having difficulty getting dressed, eating breakfast, brushing her teeth, everything took longer, and we were deep into the morning by the time she was ready. Then it was time to walk the dog. Then it was lunchtime. Now, how do I make it through the afternoon? All the while there are the endlessly repetitive questions. If we were in the study together and I was trying to do anything, focus on anything, I couldn't, because she constantly demanded my attention. She would be bored, and the only thing she could think of to do is walk the dog. But I can't let her do that by herself, because I'm afraid she'll get lost. So we walk together.
Okay, so then there's dinner, which I prepared. After eating, DW would do the dishes. I had to lurk, because, rather than put dishes in the dishwasher, she insisted on drying everything and putting everything away. But she never knew where anything went, so I had to tell her (and she often didn't understand the directions) or do it myself.
The evening ritual was to have some ice cream and watch TV for awhile. Depending on the program, DW's attention would wane, and she would head for the kitchen, where she usually had more ice cream and other sweets while I was waiting in the TV room for her to return. Eventually I had to check on her and try to curb her eating. There are a few programs and movies that we never did make it through.
Okay, that's probably a lot more than you wanted to know. Getting back to my original point, when I visit, I can spend quality time with DW, unburdened by all the baggage I just described, and I can enjoy being with her. I may need to come up with some things to do with her, but I won't have to figure out how to fill the whole day.
Do I still love her? It's hard. She is no longer whom I fell in love with. Do I want to spend time with her? At the point where I moved DW to MC, I had reached a mental state where I couldn't wait to be rid of her. (Harsh!) Now that I'm getting a respite, my head can clear, and I think I will enjoy being with her.
There have been a number of decision points in our married life (just shy of 49 years) where we went in a different direction from what I would have chosen. Unfortunately, dementia is non-negotiable. The common caregiver refrain is, "I didn't sign up for this."
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thank you for sharing. For many, the story is the same, the names are different. Please keep us posted as you visit. I found that visiting at mealtime was best and I didn’t say goodbye when I left, I just let the nurse know I was leaving so they could distract him. Ice cream worked for that. Hugs. 💜
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Thank you for this very personal insight into your journey. It is my life exactly, it’s everything I am going through with my DH. After 54 years 2 children and a very happy life together, I must be too sentimental or something but I just can’t bear the thought of placing him in MC. He seems far too aware of everything still. I wonder if I will ever reach that point of knowing and will be able to carry it through. It makes me so sad and I cry heaps. I don’t want this but I don’t want that either. Thank you for the very practical approach you have given to this dilemma. I particularly love the ‘resort’ bit I could see that working.
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Thank you for sharing your story and your honest thoughts. It is very helpful. Hope you are able to rest
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Thank you for taking the time to share the details of your journey. I like so many, am slowly understanding the ability to keep my DW at home until the end may not be the best thing for either of us. Your honesty in sharing how you came to these decisions will help many of us still grappling with the choices at hand. Wishing you peace in your heart and mind.
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your thoughts were very enlighten to me and know that’s the reality of this illness , but why do I feel at 77 I can do this till the end? I’m not delusional but I truly feel this way married 56 yrs tomorrow and can’t bear the thought of leaving her somewhere. Physically now she’s no issue it’s 3 yrs diagnosed but about 8 yrs in the making. All I think about is if something happens to me no matter how small or serious. This illness sucks!!!
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My DW is also very aware, which is why I had to use the "resort" ruse.
For a couple of years now I've been on the verge of tears, but they never quite flowed. I thought once I placed DW, the tears would flow, but they still haven't. However, on Monday, after I moved DW into MC, I happened to go up to the attic. There was a banker's box on the shelf. I hadn't noticed it before, but maybe the lid was on. On Monday the box was open, and I found folders containing old photos. The first folder I looked into contained a few photos from 1974 of what was our "first date". That got me. We were both so young. She was so pretty. I had hair.
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You touched on something important that I think we sometimes overlook. What happens to our LO if something happens to me? An assisted living community helps resolve that issue. AL wasn't for me, at least not yet. MC for DW at least gives me piece of mind that she will be taken care of.
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Thank you. At 78 and as my husband slips into stage 6, I also am making the choice for memory care. Quite clearly, , even with help, i cannot give him the care he needs. I am grieving, not quilty.
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I cannot begin to describe how similar our stories are! I have been thinking a lot lately that he might be happier in MC because he gets so bored here with only me, but I need to first try some home care. Like you I am having a hard time getting ANY time to talk privately on the phone to arrange it. Then maybe once I could find a good caregiver I can try to get time to tour facilities and finally have a plan B. Thank you for sharing your story!
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This is one of the issues that pushed me over the edge with regards to placing my DW in MC. 2 years ago I had an acute medical issue. I passed out at the dinner table. My DW just sat there until I came to. This was on a Saturday evening. I should have gone to the ER but I didn't know what to do with my DW while I was being evaluated. Instead, I waited until Monday and went to our PCP. Fortunately, I got better but it could have gone very differently. I realized if I died when I passed out, she wouldn't have known what to do and would have likely died herself several days later. It took me a year but I did develop a Plan B and then ultimately placed her. I came to realize that caring for my DW at home was a house of cards and I suspect that is also true for many of you caring for your spouse at home.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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