Separating parents in AL

BookBuffBex

Anyone have experience with both parents being in AL but needing to be separated? My dad has CHF with stage 4 chronic kidney disease; he also has droopy eyelids and dry AMD that affect his vision and depth perception and cause hallucinations. Mom is late stage 5/early stage 6 dementia/Alzheimer's. She just returned from a short hospital stay for diverticulitis and gallstones.

They have been living together in the "traditional" section of AL for about 10 months now, but mom is getting to the point where she needs to move into the memory care section. Her sleep patterns are all over the place and just recently has begun staying up all night insisting that the lights stay on. Dad can't get her to leave the bedroom so he can sleep. She is also increasingly unsteady and become a bigger fall risk. She has refused PT & OT (they are going to try again, but I doubt she will cooperate). She is overall uncooperative with full blown anosognosia. She believes she is bathing, grocery shopping, driving, etc. She doesn't recognize that she sometimes needs assistance just to stand up. Doesn't ask or call out for help until she's on the floor.

We knew a move to MC was in her future, but it looks like it's going to happen much sooner than either my dad or I anticipated. I know it is what is best for both of them and will improve my dad's quality of life, but it's going to be really challenging for them to be separate. When he's not around, she looks for him will call out for him (I was told that she was shouting out for him the entire first night of her hospital stay). Any tips for making this easier on all of us would be greatly appreciated.

Jo C.

This is one of those challenges that once again has no "right or wrong" answer. In such a situation one can only do the best one can under the circumstances. I think you are making the best decision for both of your parents ; the sooner done, the better. It is also a situation in which the facility admin's may decide to mandate that your mother be moved due to risks and inability to provide the level of care she needs in AL. Certainly do not want to be told that both your parents need to leave altogether.

Does your mother have a dementia specialist? If she does, great. If not, whoever is her primary could perhaps be consulted to review her meds along with knowledge of her consistent delusions and behaviors and determine if the meds need adjusting. If that is a need, it could bring a better quality of life for her.

While I have not had this dynamic, my LO was in a care facility that had multiple different levels of care on different floors . Many of the residents were couples and many of them resided in different needs levels. i often saw spouses from the ALF area going to visit their LO's either in Memory Care or the SNF Units. Some visited every day and stayed for a long length time.

When there were special programs on the LO's MC or SNF Unit, the spouses pretty much all attended. This seemed to work well since the facility honored and respected the spousal relationships.

In all probability, there will be an adjustment period with a few concerns, but once adapted in the tincture of time, this should be able to be a positive plan of care and your father will have the opportunity to do much better for his health.

There may be an initial sort of upheaval, or maybe not. If your mother's needs are better met and she does not have as many behavioral triggers in Memory Care as it is a calmer, non-demanding place with care plans specific for the items your mother is dealing with, she may actually do better. She had just been treated for a severe gallbladder infection as well as a UTI; that would have caused a negative behavioral uptick, so that would be good to watch for recurrence.

When my LO moved from independent living with aide care to a Memory Care setting, her over the moon noxious behaviors ramped way, way down. The triggers that caused her florid negatives were no longer part of her days. That was quite a surprise for me. Was she initially happy? No. But that changed with time.

I wonder if the Memory Care staff would prefer no spousal or family visit for a week or two; some prefer this others do not. It would be good to ask how the staff assists a new resident to be acclimated to their setting. If they assign one particular aide to your mother's care needs for the first week or two, if that aide is a good fit, then that too can be a great help. This happened with my mother's Memory Care setting. Since your mother appears to be highly delusion driven, getting the meds adjusted would be a priority; something to not overlook.

You are on the right path and have been such a loving and caring person through all of these significant changes; I think this move will help everyone. Any negatives and acting out will probably in time resolve. We have to be strong and stay the course.

Wishing you the very best,

J.

Anonymousjpl123

@BookBuffBex i haven’t had to cope with both parents at the same time (sounds utterly exhausting), but I have learned a good bit about AL and MC and the transition.

My mom is what I would describe as on the cusp of needing MC versus AL. She still has somewhat lucid days, and she is not at the very end (stage 5 or 6, say). But her bad days involve paranoia, total disorientation, and isolation. So after a very difficult period and brief hospitalization, I moved her from AL to MC.

I always knew she would eventually need memory care, which really informed the AL facility we moved her to. But I never expected it to be so soon.

Here is the crazy thing: moving her to MC was much easier than the initial move to AL. Partially because I think on some level she knew she didn’t have a choice, and partly because there is more care. She would deny it, but she is happier, more relaxed, and far less dependent on me.

Being grateful she has more care and I have less worry doesn’t mKe me a horrific daughter, it means I can care for her and not constantly feel rage and resentment. My quality of life has improved dramatically.

There are quite a few spouses where I am whose spouses live elsewhere. It’s like we’re all part of the group there. I know I’m lucky. But I also know that from what others have said, even some of the staff, I had terrible ideas about MC that have not turned out to be true.

The one thing I will say helped is I went to enormous effort to fix my moms room up almost exactly as her old AL room was. It made a huge difference. That and keeping in touch with staff, a lot, and not worrying that I was a nuisance. I know how hard this transition can be. There’s a lot of great advice here. Let us know how it goes.

BothDementia

My parents also have been living in ALF for 15 months now. Dad's dementia has deteriorated to a point where he needs MC. Their care needs are no longer the same. We had considered separating them --- placed Dad in MC and bring Mom home with us (I know, I know, that is a no no). We planned on taking her to visit Dad regularly. But, after having visited several facilities, we have found there are facilities that would make accommodations when the couple requires different levels of dementia care. We could have both "living" in the MC side, and during the day, staff could bring Mom over to the ALF side to do activities, exercise, and socialized while Dad stays within the MC where he continues to received the proper supervision. So I can say, this solution allows them to stay together and separated at the same time.

Jo C.

BB; look what I just found - it is a link topic of Memory Care impact written by other Members. I think you will find this valuable

https://alzconnected.org/discussion/66259/a-few-thoughts-on-memory-care#latest

J.

BookBuffBex

Thanks everyone! It has been a CRAZY month. The lack of sleep and my mother's behavior changes wound up affecting my dad's physical and mental health to the point that he was having hallucinations and confabulations. He was so far out that it was decided to put him in the MC unit and leave mom in traditional. Well, after a few days of rest and being away from my crazy mother, dad was vastly improved and it was clear he doesn't belong in MC. Last week they swapped, Mom was moved into MC and Dad has moved back to the traditional building. Dad is doing really well even with so any changes. Mom is confused. She is way too dependent on my dad to do things that he can no longer do, and her sleep patterns were extremely disruptive to him. I'm hoping that being separated will force her to accept help from the staff. Eventually, we will work on a routine where dad goes to visit her or joins her for meals.

MN Chickadee

These decisions are so hard but it sounds like you made the right call. Hopefully your mother settles in with time and the supports and structure of MC helps her settle down.