Easing the transition to a residential memory care facility + depression

ReallyScaredSon

     My 68 year old mother with dementia just moved into a residential memory care facility on Tuesday.  She was taken there directly from the hospital, where she'd been for two weeks.  The situation went from pretend everything's fine to, in the span of a few weeks: completely unmanageable, severe sundowners/nighttime psychosis episodes, to 911/ER, to hospital, to full-time memory care facility.

In the hospital, my mom could not have any visitors due to covid.  When my dad talked to her, all she would do is beg for him to take her home.  When I talked to her while she was in the hospital, all she talked about was wanting to die, that she has nothing to live for.

She doesn't understand that she has a problem.  Even the slightest hint that she has a cognitive impairment is an emotional blow, almost as cruel as the disease itself.  Therefore, it's really hard to tell her why she needs to stay in the hospital, and now in the new MC facility.

Since the hospital was a temporary arrangement, it was easier to sell the idea of "just a few more days".  But the MC facility is literally her new home.  Unlike the hospital, the MC facility does allow visitors.  My dad went to see her yesterday.  It was mostly pleasant until the last hour, after my dad said she wasn't going home with him.  My dad said it took everything he had to keep from breaking down in front of her.  Because she is just so sad.  She just wants to go home, but doesn't understand - can't understand - why that is no longer possible.

We just don't know how to best facilitate her transition to the MC facility.  My dad and I spoke to her doctor this past weekend, a geriatric psychiatrist of 35 years, and she said her biggest fear for my mom is the depression.  She said she's seen this pattern before, someone is unable/unwilling to accept/understand their condition, and sees only their increasingly limited ability - an obvious recipe for sadness and frustration.

Last night - literally her second night in the facility - another resident knocked on her door after she went to bed.  She woke up, opened the door and saw him, and nearly scared her to death.  She called my dad in a panic, sobbing hysterically, claiming the man had ripped the door off its hinges.  My dad was unable to console her over the phone.  Then he started talking about how he can't bear to see her like this, he doesn't care what happens, he's going to get her and take her home.  I was able to talk him down, but... it's only the second day!

We get mixed feedback on how often to visit, at least initially.  The MC facility people suggest short, limited visits initially.  But other things I've read said you should visit as much as possible.  And how does my dad, when he visits her, maintain the chipper and upbeat demeanor that she needs from him?  And how does he answer her constant pleas to go home, why can't he take her home, can't he sneak her out, why does she have to stay here, when is she going home... it's just relentless.  And each plea is another dagger in my dad's heart.

For what it's worth, she's on a battery of meds, all of which were started in the last two weeks at the hospital: memantine (for memory), lorazepam (for agitation), fluoxetine (for anxiety+OCD), seroquel (for mood regulation), remeron (for depression), melatonin (for sleeping).

 
Any hints, suggestions for how we can make this process better for either of my parents would be much appreciated!  Also, are there any books or other online resources that might offer some helpful insight?

Donnajoy

This sounds very much like the scenario my LO went through….. I don’t think there is any way to “ transition” that will make the PWD ever see a facility as the place they want to be…but take a deep breath.  

She has had a LOT of big changes in a very short time.   Being In The hospital is itself very disorienting - and can precipitate and exacerbate symptoms.  Also she has big and MANY meds.   I think after some time to adjust to the new routine, you might want geriatric psychiatrist to review her meds for appropriateness and also consider if the correct underlying issue is being treated ( ie is it to be expected “panic” and depression previpitating the new behaviors?)

In the short term, I would think under these particular circumstances, that visiting would be reassuring.  She may not be ever able to understand/ remember what led her to need this care ( my LO says she is fine and can take care of herself.. wants to go back to her condo and get her car)!!   Focus on when you will return… get her a calendar and mark it for her… put a sign up “ Jane us coming tomorrow!” Or whatever.   Talk to her about pleasant long ago memories;  if she is sad, acknowledge how sorry you are she is sad, and reassure her you all will be with her even in her sadness.   Maybe in time she can help plan something special she would like to do when you come… bring a picnic basket?  Favorite ice cream?  New baby in the family?  

It is horrible when your LO begs to go home with you or pleads to get out…. But it does take some time to adjust to the new routine, and hopefully she will start to settle in when everything and everyone starts to get a bit more familiar.   Blessings and prayers for your family.  Thus is hard stuff…

LicketyGlitz

I second everything Donna said, ReallyScaredSon. The transitions are often incredibly difficult for everyone involved. I would hold out some hope that the medications will give more relief in 2 or 3 more weeks, make things more manageable for your mom, dad, and you.

You guys are on the right track with consulting the professionals in the facility. Try going for shorter visits and see if that helps. If not, tell you dad to go with his gut and visit more for longer. What I came to learn is that a myriad of experts have excellent advice but you and your father are the experts on your mom. If their advice isn't working, follow your intuition. In dementia sometimes neither works and you gotta come up with an all new solution! It's a trial and error, error, error, wait a minute - success! kind of disease.

I also want to add that we put my mom in memory care, and after 5 weeks of misery for both her, me, and my sister and I we brought her back home again. We did so by hiring a p/t live in for 4 days a week, and my sister and I split up the rest of the days. Was about the same as MC, but the stress was actually more manageable for us all having her back home.

So if the situation does not get any better in a month or so, and it makes everyone feel more horrid having her gone, look into what it would take to hire help at home for a possible solution.

And lastly, I know a lot of dementia folks go through a crushing "want to go home" phase regardless of where they are living. My mom wanted to "go home" even though she had lived in this house for 15 years prior to diagnosis. And she darn* near tore the front door of the hinges several times trying to get out. So, it's a situation that can happen anywhere.

The best to your mom, your dad, and you. It's a tough, tough, road, but not without it's joys, you all are just in one of the horrid phases right now.

King Boo

So, a few thoughts.

It is still too early to know how her medications will impact her.  It can take tweaking by a Geriatric Psychiatrist and can be an ongoing work  in progress for several months.

Helping your Dad (not your Mom) to understand that is important, because it gives him hope.

It is extremely painful for all to experience this transition, but especially for the spouse.

I would propose that some of your work also needs to involve protecting your Dad.  His presence may be more of an upset to her right now (especially since he doesn't yet understand the need for 'fiblets' since he directly told her she wasn't coming home with him).   A fiblet for Dad himself  is also productive and gives him a valid reason to accept not visiting right now.

WWID?

"Dad, I've got this.  I know this is hard for everyone, but I will be there to make sure everything goes well for Mom.  It is to be expected for things to be rocky for a while.  IT WILL GET BETTER - and if it doesn't, we will figure it out together.  They say it can be better for the husband not to visit, just at first".

You are protecting several things in this manner.  Your Mom, from being prematurely pulled from a care facility by your emotional Dad, your Dad, from assuming caregiver role which exceeds his ability, and yourself, by having a mell of a hess if an emotional decision is made to pull her.

It absolutely takes time.  The fact that the visit went partially well gives insight that this placement was a good thing.  A lot of times, the drama is saved for family, and speaking with caregiving staff reveals that our loved ones have pleasant and content days - until we get there!

So insuring good care doesn't always mean a direct one to one visit if it is contraindicated.

Most of us have to leave without a formal goodbye in the early days, we simply leave without a goodbye which will upset the person because they can no longer process time and change easily.  Staff can distract and engage.

A mantra - the Best Answer is the one that brings the most comfort to Mom.

Pillar

I am so sorry that you are dealing with this dilemma as well as your Dad.  It must be wearing on him emotionally and eventually physically.  I pray that you both find peace.

My uncle has been in facility now for 2 years.  He forgets everything yet he is fixated on going home with his dog.  The question of when he gets to go home comes up every 10 minutes.  It is very hard to visit and so I have to prepare myself ahead of time with how I'm going to answer him.  He is starting to show signs of Stage 3 now.  The nurses and social worker tell me to just continue to fib.  I blame the Doctor all the time for not giving us a release date and they agree that it's a valid fib.  Not sure how the poor Doctors feel. 

Its sad to say but maybe your Dad should limit the number of visits in the week.  I will pray for you, dad and mom.