Considering starting Memory Care

ProfDavid

I am considering moving my DW to memory care, and I am asking for feedback. 

I am 71 and my wife is 72. She retired in 2017 and I retired in 2020. There were some memory issues apparent in 2019, but with hindsight, I can now see that there were cognitive issues earlier. She was formally diagnosed with MCI in early 2021, and then with Alzheimer’s last year. Her current rate of cognitive decline is extremely rapid. Our eldest son came to visit at Christmas and she did not recognize him. She mostly does not recognize me as her husband. She has not been driving or cooking for several years, and I have to assist with bathing, dressing, and occasional incontinence.

The current issue is her safety in our home. We have an old two-story house that has very steep stairs (which would never meet modern building codes) to the upper floor with the bedrooms. For a long time, I knew that this house would eventually limit our ability to stay at home. While we could theoretically put a bed in the living room on the main floor, the only showers are on the upper floor. It was probably ten years ago when DW was fully cognizant that I tried to convince her that we should move to a single-floor house or a condo where we could age in place. But she would not hear of moving, and now we are stuck with this house. 

I am a planner by nature, and a year ago I investigated memory care and visited several facilities. I selected one and got on their list. When she moves into MC I will sell this house (and clear it out after living here for 35 years!!). The MC facility is in a nice walkable neighborhood with shops and restaurants, and I will rent an apartment near her MC facility. 

My sister came to visit two weeks ago, and she recommended that I move her to MC now. With my DW’s rapid decline, my sister felt that my DW would do better with socialization and activities at MC compared to our home. I talked to our two sons (one lives nearby and comes by often), and they agreed with my sister’s assessment. I have done some reading, including on this forum, and I saw recommendations that it is a good idea that some move into MC before they are too far gone. My DW often does not remember where the bathrooms are located in our home; it seems that she would acclimate to the MC better now than when her cognitive decline is more severe. 

Recent events have precipitated my thinking of this move soon. First, two days ago she fell off a stool in the kitchen and banged her head (not serious, fortunately). Then I noticed she was having some difficulty navigating the stairs. So it seems now is the time. 

Last year I asked the MC facility what is needed to move in, and they provided me with a checklist of furniture, bathroom supplies, and clothing. They say clothing should be labeled with DW’s name, and yesterday I ordered iron-on name labels. 

Question 1. What would you recommend bringing to the MC when she first moves in? 

Last week I listened to a podcast from Teepa Snow on “5 Tips for Helping a Person Living with Dementia Understand the Need to Move to a Care Community.” The podcast was very good, and I became aware of the emotional consequences of this change. 

I have also read discussions on this forum suggesting that I should stay away from the MC facility for several weeks while she acclimates to the new place. Other posters disputed this recommendation. DW is not usually aware of her location, and I think she will acclimate quickly. 

Question 2. Any suggestions for how to handle the transition to the new living situation, and on whether or not I should not visit her for several weeks? 

Thank you. David

M1

Hi David. Kudos for being so proactive. My partner is coming up on the tail end of her second year in MC.

Regarding what to take: i would start small, both in terms of clothing and furnishings; you can always bring more later. Don't take anything that you're not prepared to lose, because things do go missing, even when labeled. I went today after a weeks absence (weather related), and both her toothbrush and a fleece jacket are nowhere to be found. That's the third fleece jacket we've lost, along with a hairdryer, two pairs of shoes, and Lord knows what else. If you take family pictures, make sure they are copies.

Regarding whether to visit or not initially, i think this is very individual, and you can rely on the staff to help you make that decision.

I hope it goes well for you, i truly do.

Arrowhead

When I moved my wife into memory care in October, I asked about whether or not I should visit her for a while. At her facility, the policy is to allow visits from the beginning, unless it causes problems for the patient. My wife seemed to not have any problems associated with her placement whether I was there or not, so I visited her. I suggest doing the same if it is allowed, and if necessary, adjust as needed.

sandwichone123

I took the minimum when my dh moved in. Later I could bring more, which made him happy. He was upset when I brought him, so I waited a couple of weeks to visit and let him get settled in, although the facility would have allowed me at any time.

For a fairly short time he asked to come home and promised to "be good," although of course he didn't understand the issues that had caused the change. Pretty soon he came to see the facility as home. He likes the people and some of the activities, and when I go see him I am rested and not stressed out from dealing with behaviors and risks.

Vitruvius

ProfDavid,

Your situation is very similar to ours. Same ages, similar rapid decline, my DW is a bit farther along however and is now in Stage 7 and wheelchair and bed bound.

I moved her to an MCF 17 months ago at the urging of my daughter and my own recognition of how difficult her care was becoming. I was convinced that she would strongly object to the placement but she was much farther along than I really recognized. She moved in without any difficulty and never, not once, questioned being there. I was able to visit every day from the first day. She always appreciated me being there but was surprisingly untroubled by my leaving each day. The staff was well trained on how to acclimate a new resident and engaged her in activities and socializing right away.

She was always anxious and restless at home, I’m convinced the familiarity with our house caused her to feel she should be doing something she always did there like hobbies or housework but she couldn’t understand what those things were. She seemed much calmer at the MCF and enjoyed the activities (mostly the music ones as she was beyond crafts). The aides have always been extremely kind and patient with her and she is cheerful and relaxed when I visit. She is now very out of it mostly, sleeping about 22 hours a day. So I have reduced my visits to every other day, or sometimes three days a week as frankly it is very hard for me to see her like this, I hand feed her and it can take quite a long time as she fades in and out of sleep.

As for what to bring. Not really too much is needed as her life will be simpler and very routine. The MCF should be able to tell you how many day’s worth of clothes. A few basic toiletries. Our MCF provides soaps and such. Our MCF provided furniture but I brought her favorite chair (which she can no longer use). We decorated my DW’s room with all kinds of things she might remember and grandkids art work. As others noted, copies of photos and other non valuables. When my DW went in she still liked looking at picture books, the kind of coffee table books about national parks and exotic locations. This lasted about six months until she no longer understood what a book was.

I feel for you as this is a very difficult decision. Like others here I agonized about whether I had done the right thing and if I had done it sooner than absolutely necessary. But I truly believe she is content and well cared for where she is. I had a very significant medical scare just after her placement, probably from the stress of her care and realize it could have been disastrous if it happened when she was still home. (I was a model of health and fitness before I began 24/7/365 care of my wonderful wife.)

Best of luck to you. Let us all know how it goes and if you have any further questions.

Joe C.

Prof Dave, Welcome but sorry you needed to seek out our community. Your DW sounds to be in a similar stage as my wife when I placed her 2+ years ago. I also had safety concerns about keeping my wife home due to wandering, attempting to eat small object and drink liquids not for consumption. She needed eyes on her 24/7 and I knew it was only a matter of time something bad really serious happened.

Our placement experience was pretty seamless. DW no longer recognize me as her husband or our house as her home. I scheduled her drop off to coincide with music entertainment at the MCF as she loves music, the staff met us at the door and took her directly to the activities room. She has never once asked about home or why she is there. She is actually much happier at the MC than she was at home. At home I could take care of her ADLs but I could not provided the socialization and engagement she has at home. She loves have people around, both staff and other residents and has developed friendship with other residents. I felt really guilty about placement in the beginning but I quickly realized it was the best option for her.

The MC staff told me I could start visiting immediately and I started visiting the next day. As I mentioned above DW never asked about home, the only question I ever got was, “where have you been?”, to which I’d respond, “at work” (even though I had been retired 7 years at that time) and she would except my response with question.

Beachfan

Hi David,

Welcome to the forum, and, again, sorry you need to be here. My DH resided in a MCF for 17 months prior to his passing in April. My situation was somewhat similar to yours in that DH did not recognize me or other family members, could no longer navigate our one floor, downsized living quarters and required my hands on caregiving 24/7/365 in order to keep him safe and content. Like you, I had thoroughly researched MCF’s for 2 years prior to placement, “just in case”. I arranged a 30 day respite to see how placement might look for both of us. The respite morphed into permanent placement at the insistence of my grown kids who could see what I could not- - that my unrelenting caregiving was both unrealistic and unsustainable.

His MCF was 40 miles away, solely dedicated to Alz/dementia patient care, a small cottage style setting, all inclusive and private pay. I brought labeled clothing, minimal personal care items, and one or two things from home. He spent little to no time in his private room; he was always included in activities although he didn’t typically participate. He acclimated from day one; for that reason, I could visit immediately. Considering the distance, the weather and the terrain (over mountains and some busy highway), eventually I visited once a week, staying for several hours and typically hand feeding him a meal. He was always clean, well fed, content and clearly well loved by staff. My every visit was a good experience; family and friends joined me occasionally and my youngest granddaughter was a faithful companion. His MCF was a cheerful, warm environment. Overall, given the circumstance, it was a peaceful albeit sad experience. When he declined suddenly, I slept in his room for 3 nights until he passed. “Stage 8” has afforded me a renewed opportunity to rejoin a normal life. I have no regrets; I will love him and miss him forever.

I can only wish that everyone on this forum could navigate this horrendous journey with some measure of peace and comfort with whatever decisions they need to make. Best wishes to you and your DW as you move forward.

ghphotog

Prof David, I'm right with you. My DW hasn't been able to navigate our home for years and no longer recognizes our marriage although she still knows my name. Such a heart wrenching decision. I to am worried about her safety home alone with only myself. It would be tragic and catastrophic if something happened to me while we are home alone. She wouldn't survive. I have a move in date very soon. My heart just sometimes won't get out of the way so I can do what ie right for both of us. I'm doing the 30 day respite but if goes well then probably leave her there.

ProfDavid

Thank you for your kind and helpful comments. David

Concernedwon

David, so sorry you are at this stage of your journey. Thanks for bringing this up and asking questions that I will soon be faced with. DW is in early stage 5, but is rapidly declining. She can still handle most ADL tasks with just a minimum of help. The most difficult issue for me is her increasing agitation. She is still "able to make decisions", and has refused medication. Thanks to those who responded for helping me formulate a plan before the time comes. Fortunately we live in a single level home, but it is on 10 acres in a very rural area. MC facilities are available within 30 minutes drive, so perhaps I will be able to stay here longer. We have discussed assisted living facilities several times, but her idea is I would go there with her.

So, I had better get busy and develop a plan.

Thanks to all who participate in this forum. I couldn't go through this without you.

Denise1847

https://alzconnected.org/discussion/comment/195475#Comment_195475

Hi M1, For whatever it is worth, when my aunt was in memory care, she would accuse the aides of taking her things. After she passed, we found all of the missing stuff in various hidden places in her room.

Ed1937

David, other than the usual things, I would recommend bringing a recliner in case you decide to stay the night at times.

Gig Harbor

Hi David,

I told my husband that I had some doctor appointments and that they thought I might need surgery. I explained that there was no family to stay with him and that the doctor had suggested a nice place that he could stay at. As it got closer I mentioned further tests that I needed to have. Finally I told him the night before the move that I needed to go into the hospital the next afternoon. I assured him that it was not a dangerous surgery and that I would be fine but that I needed to remain in the hospital for two weeks. He moved in without any issue and never asked to come home. Once he was there for a few days he never mentioned home nor did he ever even ask about our dog. He seemed to live totally in the moment which I think was a good place to live. Good luck on your plans.