Adjusting to memory care(1)

LindaBK

My mom with dementia has lived with my husband and I for the last year. Honestly, because of COVID it was pretty easy to take care of her because we were always home. She is mobile and healthy except for her memory issues. During this time she went and stayed with my brother a couple of times when we had to be away. The transition was always difficult. 

As things have opened up it has become more difficult for us to arrange for her care when we are away. Because we had so many out of town family events happening in July we arranged for a month long respite stay at the local assisted living center. She spends most of her time sleeping at our house so we wanted to see if she would benefit from the socialization and activities. After assessing her they determined that she would have to go to the memory care unit. She did not want to go of course. She has been there 10 days and I have visited her when I have been home. 

I visited today and she is not doing well. Very unhappy and sad. Asked if she could live with me. She doesn’t remember that she has lived with me the past year. Hates living with old people and wants to live with family. When she “found out” that I lived near by and could visit her- because she has no recollection of me visiting her- she felt a little better. She does not like to do the activities. She will eat in the dining room sometimes. Still sleeps excessively.

So here are my questions:

Did your loved one ever adjust to memory care and how long does it take?

She has a dog who cannot stay with her. He can come for visits but I don’t know if that is a good idea. She does still remember him and wants him to visit

Is there anything family members can do to ease the transition

Is taking them out for outings a good idea

She does not remember that this is a respite stay and thinks she lives there now and says it is the worst decision she ever made. What I am struggling with the most is that she only knows the current moment and how it makes her feel- and it makes her miserable. If we bring her back home I will have to choose between seeing my kids and grandkids or staying with mom. There will be guilt either way. How does everyone deal with this? 

Sorry to go on so long

SRCB

My father continues to pack his belongings and thinks he'll be leaving memory care in 2 days. It is almost 1 year since he moved in. The first 2 months he actively tried to escape. He's no longer doing that and when my brother takes him out he willingly returns. If you think your mom would go back into the building without a fight then definitely take her on excursions. Is she's not socializing then she may get bored and that can lead to other issues.

My brother recently started taking my dad's dog with him for visits and it has worked really well. My dad and the dog love the visit and my dad hands the leash back when my brother leaves. 

Good luck, it takes some trial and error to get a good balance.

Sjodry

LindaBK,

I think most folks adjust to MC or their disease continues to advance so much they no longer notice their surroundings. My mom was advanced enough that when I moved her straight from the hospital to the MC, she hardly noticed.

It was interesting to watch as on her higher cognitive functioning days, she might ask,”when did I come here” or “where are we?” But most of the time she never asks. She has come to love her room (which I call her apartment). She often comments on how nice her room is. Another interesting thing on those higher functioning days, is that she will suddenly comment on the beautiful butterflies ( I have butterfly window clings all over 2 large windows) when they have been there for weeks and it is as if she has just discovered them for the first time.

I live 5 mins. from her nursing home/memory care. I can bring her home easily (where her 16 y/o cat, Yeti..that I inherited..is living). What I have found over the last few visits..is that it takes her out of her comfort zone. She no longer recognizes Yeti (the cat she adored and requested to have her ashes co-mingled with). I also notice she seems nervous and starts asking when she needs to go. We now have the practical matter of me not having the 5-7” toilet seat extension on my toilet. Believe it or not..just this seemingly small issue was a big deal on her last visit on Memorial Day. I was trying to lower her down to the seat, she was in a panic that she was falling and screaming a few choice words at me.

So with that long explanation..yes, they do become accustomed to their memory care home. And finally..one more interesting thing..when I brought her back to her room and opened the door..her response was pure delight..because she has butterflies just like those, she has a bedspread just like that and she has a teddy bear and cat (Mr. Happy & Fluffy..) just like those. She never referred to it as her room, apartment,etc., but she was happy to be back in the space.

At a certain point, memory care is a necessity to keep them safe. They do adapt, often much easier than we anticipated.

Best of luck with your mom!

Take care.

Sandy

Mom's Baby

Hi Linda, 

Are you considering making this move to memory care a more permanent arrangement? If not, I wouldn't worry too much about your mom adjusting to it. It takes most people more than 10 days or even a month to fully adjust. Also, if this is just respite care, the staff probably aren't doing the same things to help her assimilate that they would do with a permanent resident. 

For example, my mom was extremely upset when she went to memory care after being hospitalized for a broken hip. The memory care staff knew how to handle this and made sure she was out in the commons area instead of her room nearly all the time (except for sleeping/toileting). They didn't give her a choice about participating in activities. She would sit at the crafts table, for example, even if she didn't want to make a craft project. That way, she wasn't sitting alone and cycling on "why am I here." If you can keep them occupied, they are much more content.

I would also consider that seeing you triggers her desire to be elsewhere. She may be just fine when. you're not there. Check with the staff. But again, 10 days is NOTHING when it comes to memory care adjustment. Also remember that you have to live your life. Do not feel guilty about this. If she was ill with a different disease, you wouldn't have an issue having professional caregivers for her. But for some reason, with dementia, families think they should be able to handle it all. For many of us, that's just not possible. 

King Boo

"If we bring her back home I will have to choose between seeing my kids and grandkids or staying with mom."

With regard to MC, most grumble about all the old people.  They lack executive function and insight.  How to work this one?   Yes, Mom you are so much more young, healthier, etc.......   My LO positively preened when I said this.  We are here temporarily to get you 'healthier, stronger, a break, I hear the chef is excellent, you deserve this, etc."

The solution never lies in a rational straightforward conversation about care needs, so leave that in the past.

This disease goes on for a long time.  It can take a whole family and marriage down.  If the care seems good, consider extending the stay for adjustment.  Expect there to be complaining and deflect it and change the topic.

THE BEST ANSWER IS THE ONE THAT BRINGS THE MOST COMFORT.   Learn the art of the fiblet - critical!

Going out for outings with family has great potential to disrupt the adjustment.  Don't do it in the early months.

The guilt goes away when you realize you have no control over how the disease presents itself, progresses and that caregiving in facilities is one by three different shifts of staffs.  3 different groups of staff, doing what you do 24/7.

Care needs drive the decision making.  

Salsam

I moved both my parents to MC after the Pandemic.  They had lived with me 5 years....and it was actually great having them live with me  until it wasn't. 

Of course, they did not adjust well at all.  They put my mom in AL for one week, then figured out she needed more care, so they moved her to memory care.  

One night I got a call at 2 AM...from the head nurse who said my dad was violent.  She called the police.  When I went in , he hugged me and said I was the only thing left he had in this world. 

Another time he screamed, "80 % of the people here are either physically or mentally disabled!  What am I DOING HERE?" 

I was able to find a private care home where they got more attention....and my dad died after one month there.  
My mom has gone downhill very fast..  her whole life was my dad...

She forgot how to walk,  and this was within a week of my dad's death. 

She knows he died. 

I have read carefully the stages of AD but I would say there are 2 stages for the caregiver.. 

Manageable and Unmanageable.  

I still deal with guilt from moving them, but I talked to a friend this week whose mom is behaving the same way in her own home...but the dad does not have Dimentia, so they are able to somehow keep the living situation in his home.  In my case they were in my home and no one could sleep.   

Sometimes Hospice agencies (if they are small) know of private facilities that in my area turned out to be better than the larger facility and less expensive. 

Or perhaps a rehab center might have staff that know of smaller facilities.  

Don't feel guilty if possible--it gets to a point it is either them or YOU....and only one of you is capable of remembering and keeping sanity..  I am happy with the place my mom is now..and she has adjusted.  When I moved her there...I thought she would be happy but she screamed at me for 30 minutes --even though she didn't like the other facility.. she did not like that I didn't let her in on the PLANS to change.  But she would not have been able to remember the plans. 

Now she doesn't remember the other facility.  Do what is best for YOU..  It is so difficult because they are our parents and we do not want them to suffer..