Both parents in assisted living

Smilescountry

Hello! My family and I are new to an Alzheimer's diagnosis.  In fact, we have never had a relative with any kind of dementia, other than very mild cognitive decline, and that at a very advanced age.  However, my 88-year-old father was diagnosed with Alzheimer's in September of 2022, and at that time he was likely heading toward the middle stage, although he was still driving some.  By the time December came, it was obvious to us that our mother, 87 years old, would not be able to provide care for our father.  She was not willing to have in-home care, nor were they willing to live with any of their children.  Our mother chose to move with our dad when we found a nice place the end of December because she didn't want to be alone and also wanted to be with him.  It is an assisted living facility that provides memory care through end of life, with only two exceptions that will likely not affect my parents.  Because it is on the smaller side, Mom does not have to be in a separate wing, and her room is next to our father's.  They are avid bird watchers, and their rooms give them plenty of opportunity to do that, both out the back window and in the large courtyard when they open their doors.  We are so thankful that they were able to afford this kind of care, but we worry about our mother.  She has mild cognitive decline, but our doctor is also treating her for some depression.  She is not participating in the many activities that the facility offers, and pretty much stays in her room.  I am going Friday to participate in an afternoon of "bird" activities designed especially for them to see if they can be encouraged to participate.  We wonder if mom should have gone to assisted living with Dad, but it really does seem like the best plan.  We work hard to also get Mom out to enjoy some of her usual activities, especially since they live in their own community.  Has anyone else been through this?

Suzzin

smiles, I'm sorry you're going through this but your parents are lucky to have your support. 

One thing that I had to adjust in my own thinking when I moved my parents to AL--they didn't really do a lot of group activities in the "before times", so they weren't magically going to start doing art classes or sunset boat cruises.  What does your mom say about all this? It must be a big adjustment for her, as well as your dad. Was she on board with the move?

Quilting brings calm

There could be various reasons for your mom isolating herself- depression, period of adjustment, etc.  It is also possible that the size and layout of the place isn’t comfortable  for her right now 

Bigger AL facilities usually have apartments of  varying sizes, not just rooms: studios, 1 or 2 bedrooms, with private bathrooms, refrigerators and microwaves.   Residents can come and go as they please. MC facilities usually have rooms, often two to a room, with those two sharing a bathroom, and no microwaves.  MCs are usually locked wings so residents can’t wander.  Your mom may be feeling overly restricted for her cognitive abilities. 

Bigger ALs have activities geared toward residents able to cognitively participate even if they have physical limitations. MCs have simpler activities geared toward  dementia patients.  Your Mom may feel she’s being ‘babied’.  

A frequent poster here often mentions that AL residents will shun residents with dementia once their cognitive abilities decline past  a certain point.  Your mom may have been able to deal with one person with dementia, your dad.  She may be very uncomfortable around a room full of people with dementia. 

Your mom may settle in as she becomes adjusted to the changes in her life, or as her own cognitive decline progresses. In the meantime, maybe you and her friends could make sure she gets out of the facility on a regular basis since she’s not nearly as far gone as people with moderate dementia. 

Twoatonce

I'm in a similar situation as you.  It's really tough.  My mother has had slowly progressing Alzheimers for years, while my father has had mild cognitive impairment that is now moderate/severe.  After my father had a TIA and my mother had a stroke last year, we decided it was time for them to move to assisted living.  My father insisted on living in the same room as my mother, so they are both living in a studio in memory care.  My father currently has privileges to leave memory care and move throughout the assisted living facility, although that may change because he is declining.  My father has not participated in activities on the assisted living side as I had hoped he would.  I didn't understand why at first, but I am slowly realizing that it is because of his own cognitive decline.  I'm glad that you found a place that works for your parents.  It has been an uphill battle for me, with one problem after another.  I keep trying to find a better place, but having both parents with dementia at the same time makes it difficult and costly.  I wish you the best on this heartwrenching journey.

harshedbuzz

Smilescountry-

This is a difficult situation. The sad fact is that no place is going to be ideal for partners who both have a differing degree of cognitive impairment. Home with good caregivers might have been closest, but the financial piece is usually not doable. The emotional cost of your mom's home being invaded by HHAs and turned into a "nursing home for 1" is real, too. 

It sounds like your parents are in a memory care facility (high acuity AL, Al for MC or secure MC) as opposed to a traditional hospitality-model assisted living. In this scenario, depending on mom's personality she may not be getting her social needs met by other more impaired residents. It's possible that the activities scheduled are dementia-informed and perhaps too simplistic for her to enjoy. 

There's another possibility. Fairly early on in the disease progression many PWD/PWMCI develop apathy-- it's one of the earliest symptoms when activities that used to entertain no longer do. Sometimes memory loss can make a previously enjoyable activity less fun or even frustrating-- picture a home chef having their recipes flop or a master gardener struggling because they got planting instructions all wrong. It's as if they no long get the same fun out of doing things they used to because they no longer excel at it.

We saw this in my dad who had been an avid reader of history, biography, novels and best-sellers. He always had a couple of books going. I often sent dad books as gifts when one of us ran into something especially good. The last few years I did this dad complained that the books weren't very good which was flatly untrue. Then he started to reread old best sellers he'd loved and complained that they weren't as good as he remembered. I think he'd lost the short-term memory to make sense of what he was reading even though his ability to decode remained intact.

This can occur with a inertia in which the individual just can't get it together to plan to do something enjoyable and make it happen. While you can overcome that by providing the executive function assist and making her usual activities happen for her, don't be surprised if the apathy prevents her from enjoying it as you might expect. 

Meds are sometimes used for this kind of depression. Often something like a lower dose SSRI is added. Dad was already on Prozac, so his geriatric psychiatrist increased his dose. He also added Wellbutrin in a bid to overcome his extreme apathy; it didn't improve that aspect at all. 

HB

Smilescountry

Thanks, everyone. I am just getting back a few months later, and I appreciate the insight that you all have been giving. My mother is doing better now. She has finally agreed to let her friends take her out to eat occasionally, and she is participating in the activities now. Some of them are pretty simplistic, but they do offer a variety. She also helps with her musical abilities playing the piano and the accordian. They have also asked her to help with some cooking activities in the future--dipping chocolates, making pies, etc. A few things have helped. First, she was put on an anxiety/anti-depression medicine, which has done wonders. Second, her doctor, whom she pretty much worships, had a stern talk with her about what she needs to do to keep her mind and body active. Third, this facility is in the community where my parents have lived their whole lives. Consequently, one whole hallway is filled with people they know. There are probably only three or four other people as alert as my mother there, but she is also willing to get past the dementia of some of her friends to socialize with them. We take them to their church every Sunday, and family does its best to visit with them. Today, Mom went with a small group to the movie theatre, where she saw her cousin and his wife. It did bother her at first to see so many people worse off than herself, but we are all working together to try to provide for her needs as well as Dad's. If Dad progresses very quickly, which could happen, and Mom is left, we will revisit the arrangements. However, she is happy that she can be with Dad through all of this and also have all the help that the facility provides.