That middle ground between AL and Memory Care

Suzzin

My parents are in assisted living less than a mile from me. Both have dementia (one Alzheimer's, the other TBI from a fall and surgery), and are declining slowly but steadily. They are doing well in their current facility due to a combination of being able to support each other, a kind and caring staff, and my daily visits. I know they will need to move at some point, but they have finally adjusted to this place after almost 2 years. They have a  beautiful 2 bed/2 bath apartment with a view of the water, and one of the things they are still able to enjoy is walking around the building and the grounds. Neither one is in a wheelchair, and they are sweet and sociable at mealtimes. I go up every afternoon, and can also pop in with ice cream, to fix the tv remote, or bring the dog by for a quick cuddle.

The nurses at the facility have said that they need more help and we should be looking at memory care. I have looked, and the options here are limited--there aren't many facilities that are able to accommodate a couple, they would be in one room, locked into the memory care wing.  The best options are 30-40 minutes from me. It would be a dramatic change from where they are now, and I think they would feel that I had forced them into a nursing home (which is actually what I would be doing).

Mom packs up to go "home" all the time and would have a very hard time with yet another move, but she has been unhappy for so long (even before they moved out of their home) that that's not likely to change no matter what. My bigger heartbreak is my dad, who has tried so, so, so hard for the last three years as he's been losing his mind. He's aware of his deficits, he tries to be positive and grateful, he agreed to leave his home only for me, and is trying to make the best of their current situation. Telling him he has to move to a new place that is in every way a significant step down from where they are would make him feel like he has failed. He won't know what he's done "wrong" and why they are being kicked out.

And, selfishly, it's so helpful that they are close, it means I can spend 1-2 hours a day with them and still keep my own life going. If they move, that will be at least 3 hours a day, plus if they have doctor's appointments or just need more attention.

I don't even know if I have a specific question. How do I help them where they are? How do I explain the necessity of a move? How do I live with the guilt of locking them away? How do I know when it's time? 

M1

Hi Suzzin.   What a terrible dilemma.  I wonder if it's possible--or financially feasible--to hire additional help for them where they are?  Can the staff be more specific about what it is that they need more help with, that they're not currently getting?  Sounds like your mom is the one with Alzheimer's, is that correct?

Quilting brings calm

I don’t have any advice about how you prepare your parents for a move or deal with the emotional impact of such.  I will be figuring that out for my own parents in the future.  They are in 2 bedroom AL apartment too. 

What I do think is that it is probably time for you to seriously consider it for the reasons below: 

 The fact that the nurses are telling you they need more help is a heads up.  Soon the director will come to you with the same suggestion.  Then later will become a demand for them to leave. There may be a grey area for a while where they request that you hire an aid of their own to be with them certain times of the day.  You will only have a short time period to find them a new place if this happens.  ALs are not allowed in certain states to have residents who need more care than they can provide.  

The fact that you are over there every day is another reason.  You shouldn’t have to be( have to be is different  than want or choose to be).    Have to be indicates that the assistance provided by the staff isn’t enough. This could be because of their combined needs.  

It’s possible that moving one would  mean the other could stay for a while.  However you’d be paying for two separate facilities. Their reaction to a separation could be good or bad for their conditions too. 

harshedbuzz

Suzzin-

This is a difficult situation. I get a sense that the ideal setting for each of them is not the same place. That your mom is packing to return home after 2 years suggests she is absolutely a candidate for a secure MCF. I suspect your dad scaffolds for her quite a bit still, but it does sound as though she needs more hands-on care than this facility is willing to provide and that she would benefit from dementia trained staff. 

There may be a possibility that the management would allow you to hire in more support for their care. Have you discussed specifics with them? Do they both need more hands-on help with ADLs at a specific time like getting ready for the day or at bedtime? Do they both need help or is your mom seen as generally "needy" throughout the day?  

There's also a possibility that however delightful they are, the inclusion of 2 residents with increasing cognitive changes is not something with which they want to deal. Perhaps they have chosen to market themselves as a facility for people who need minimal help with housekeeping and meals and don't wish prospective residents to be turned off by seniors who obviously have some cognitive changes. 

The nurses communicating a concern about the level of care needed is a warning that you need to dust off your Plan B for care as you will probably be asked to leave fairly soon. From where I sit, it looks like you will need to make a decision sooner than you might like. 

HB

Beauchene105

Hi Suzzin, my mom is in that same "place" of middle ground between AL and MC. I know it's  different with two parents to plan around instead of one, but wanted to share how I dealt with this.

Two years ago, the AL head administrator let me know that my mom's level of care had risen. She offered me the option of engaging sitters 7 a-8p which would allow my mom to remain there and "age in place". This I embraced and it has worked out well. My mom loves it there and is in the town where she's lived for over 70 years and also has a sister there in town who visits. I love this AL and the sitters, too. So this has worked for me. My mom just started palliative care and thus is receiving good care without having to move. Maybe something like this may help you.

As they say-"it works...till it doesn't ". Then you go to Plan B. Or C. Or D...and there are 22 more letters! Something will work out for you and your parents. 

CanyonGal

I agree with the other comments surrounding this topic. I would see if you can add a caregiver or two to fill in the gaps. (Financially, you can weigh the cost of memory care versus paying the cost of additional caregivers.)

At some point, there may come an illness (where one needs to be hospitalized) or a fall (that requires rehab) and those events will separate your parents. If you have done your "homework" and have a list of Memory Care alternatives, you can move them at this point. Mom or Dad needs more care, and we need to move you both to a place where you have more assistance.

It is not an easy decision, we all face it at some point, but my main concern is the facility requesting the move.

Suzzin

We are going to try adding a sitter for 4 hours a day in the afternoon. I'm not sure how it will work--they won't accept someone sitting on the couch looking at them, and I'm not sure the facility wants a carer camping out on the couch in the hallway. I'm hoping, maybe, if we can get someone to escort them to lunch, tidy the room while they're gone, keep an eye on them afterwards.  Popping in every 30-60 minutes? Check dad's hearing aids, help him with the TV, offer activities? I just don't know how it will work.  What does a carer do if they don't actually need "caring"? And even worse, in our three year experience we have yet to find a carer who actually cares.

Phoenix1966

Like others have said, if the nurses are telling you one or both of your parents need MC, then there will be things for a carer to do.

Speak with the nurses and get a list of events and/or actions that they feel require additional attention/assistance.

And, unfortunately, as the others have already mentioned, if the staff is saying they need MC, you may be looking at an “eviction” in the near future. Start touring MC facilities to see if there is one you like and what facilities have vacancies. Get your ducks in a row now.

Your parents are lucky to have you looking out for them. 

[Deleted User]

The user and all related content has been deleted.

[Deleted User]

The user and all related content has been deleted.

Suzzin

Thank you all for your input, it was really helpful. The heads up that the gentle warnings from the nurses were a precursor to more serious concerns was a wake up call. I've hired a carer for 4 hours in the afternoon, which seems to be when they wander the most, and cleared it with the facility that the carer can hang out on the lounge chairs in the hallway when she's not in their room (they nap a LOT in the afternoon so she should have a bunch of down time). She starts tomorrow, and that will hopefully buy us some time.

This afternoon the nurse called and said mom had been out in the front parking lot looking for her car, and was also distressed that she couldn't find Dad (he was in their apartment). After reading your responses here, something finally clicked and I realize I do need to move them. I'm trying to scaffold them in to a place that their "old" selves would have wanted, and I'm starting to accept that it's not going to magically work out.

Mom looked at me, so tired, and said, "I don't want to be here any more, when can I just go home", which broke my heart. Then when I tried to suggest to dad that they will need more help, first he said he likes it there, isn't he doing okay, aren't they okay? Then he looked at me, sagged with defeat, and said, "I'll do whatever you tell me to".  My poor parents, this isn't anything like what they thought their golden years would be.

[Deleted User]

The user and all related content has been deleted.

harshedbuzz

Suzzin-

I am so sorry.

It's difficult enough to get a plan in place that is ideal for one PWD much less two who may have different, competing and/or conflicting care needs.

I get the impression that your mom needs a full-on secure memory care while your dad seems to be in a place where he is capable enough for AL but not willing or able to manage mom. And, like most of us, the reality of paying for care will impact the choices you have available to you.

I wonder if a CCRC or place that offers both MC and AL/Personal Care would be an option. A flexible setting might be able to allow them to be in the same building or campus if they need different levels of care. One of the husbands in my support group had a wife in the SNF area of their CCRC-- he was able to bring her to lunch and join him for things like movies and swimming initially and later to have lunch in the SNF when she no longer could leave the unit. 

Another option, if your dad is willing, would be to have them room together in the locked facility, but allow your dad to spend part of the day with residents who are less cognitively impaired. When my aunt first went into MC, the facility encouraged her to attend the programming and meals in the AL part of the facility because it suited her stage better. 

HB

MN Chickadee

I feel for you. The loss, grief, guilt around these changes and transitions is just awful for you and your parent(s). Moving my mother to a locked memory care unit was the hardest thing I have ever done in my life, I think even harder than when she died. I know how you feel. It's not what any of us wanted and it is so unfair to see our parents robbed of their golden years they worked so hard for. So.incredibly.unfair.  

You might try some therapeutic fibs to make this easier on your dad. Make it not about his inability to care for mom or the household, but more about her needs. Maybe the doctor says she needs memory care, or maybe it's a "trial" to see if a memory specific unit and all its amenities helps her. Maybe it's temporary. For what it's worth, my mother did not go willingly and the transition was awful, but once she settled into memory care she really thrived. Not trying to survive in every day life and struggling with every little twist and turn of the day allowed her to use her remaining brain power in better ways. The routine was really important and she knew what to expect, no surprises, and this brought her anxiety way down. Activities and visits became more pleasant and she truly was living the best life she could because of the high level of structure and supports MC offered. So there can be silver linings. 

My mom was in two different MC facilities over the years. They both had some married couples. One was a small facility with an assisted living unit and a memory care unit and the other was a continuing care campus with many buildings and levels of care. There were a few married couples in the locked MC unit at both places and the spouse who was less impaired would spend some time in the AL for social interaction and activities and go on the outings with the AL residents. At the CCRC some married couples were in one unit, others had one in the MC or nursing home and another in AL. You may find a setting that can work for both of them. 

SEM_BOS

Just to let you know you're not alone... my mom is also in the 'in-between' area. She has moments when she is very confused and would definitely 'elope' or have problems if she left an AL.   So she's in MC, however she is also very, very social and there are only a couple of people in the MC at her level of social capability.

She enjoys going to activities on the AL floor, but the facility isn't comfortable letting her do that unless she has an escort (family or a companion we've hired twice/week).

When on the MC without much to do, she gets bored and restless.  (Even if there are good activities on MC, she'll get bored if there is a 20 min lull between lunch and the next activity).

 Also, her MC floor has had a few married couples. I think they have small 1BR or 2BR apartments on the floor.

Anyway, not advice, just sympathy and "you're not alone". 

SEM