Seeking advice from experiences of moving to AL or MC

Reneeoriginal

My able bodied father lives at home to care for my mother in Stage 6 Alzheimer’s...they have lived in this house for 21 years. She is not incontinent, does not wander, and is still mobile but dad is more of a companion versus a caretaker.  Her personal hygiene is very neglected, keeping up with medications are a struggle, and he’s tiring of meal prep and such.  The sibling that they mostly depend on will be moving out of state and so a decision has been made to relocate my parents closer to me but we’ve agreed that AL/MC is better than continuing to live on their own.  We’ve toured a few places and he is leaning towards moving both of them into a 2-bed apartment in an AL. There aren’t any special services for memory care but the help in medication, ADLs, and meals will be tenfold better than their current situation.  My dad is mostly excited about the freedom of being able to leave my mom in the care of others so that he can have breaks and not worry about her safety. While this AL may benefit him, I am more worried about the transition for mom and am not fully confident that the AL’s skill set will provide all that she needs.  We have another option — a CCRC in which they can start in independent living together.  Compared to the AL, there are plethora of community/social events (good for dad) but also specific services for those with memory loss and caregivers (good for mom). When there is a space open (usually within 3-6 months), she can transition from independent living to MC and he would continue living in the property.  I personally think MC would be more beneficial to her since they specialize in memory loss. His dislike of the CCRC is that he has to remain caregiver for more time.  However, I think the CCRC may provide better services for the long term.  But I do worry about this option for the reality that there will be two moves for my mother and that her decline could come at a steeper rate.  To be honest, I anticipate decline either way due any move but she does need more help than he is giving and it will only get harder.  

From those who’ve done a move to AL or MC, what advice do you have? Looking back, is there anything you would have done differently? Opinions on one move into AL versus multiple moves in CRCC/MC?

harshedbuzz

Renee-

Ugh. What a situation. At least your dad is all in on moving. 

In your shoes I would push for the CCRC assuming you know they would be accepted; most where I live will not accept a couple where one party is already declining cognitively which is why I was unable to get my parents lined up with one when I moved them. The AL is kind of a lousy fit for both of them- no dementia-informed care for mom and maybe too much like nursing care for dad. 

Can your dad be reasoned with? A CCRC will be a better fit for him as your mom is less able to socialize and after she passes. Is there any way to get him some respite during the time in the Independent Living apartment? Could she join the MC group during the day for activities? My aunt's MCF typically had a couple of PWD who lived with children who worked spending the day having meals, activities and supervision. If not, you could hire a caregiver to either take her out or stay with her so your dad could get a break. 

One of the men in mom's IRL support group lived in a lovely CCRC, based on his experience I would say it created a village to support him in her care from the early stages until she passed.

HB

Quilting brings calm

Options;   Ask the CCRC if they can provide certain services to your mom in the independent living apartment for an extra fee in the meantime / or if they have a list of qualified aides you can hire directly,  or if your Mom can go to the MC unit for lunch/activities until there is a room available. That will give your dad  some  free time. 

I also wonder if your Dad feels he might need some of the assisted living options for himself .  What does the assisted place provide in daily help that the independent living option doesn’t?  

I’m actually surprised that the CCRC doesn’t have an assisted living option.   Based on your answer to my question above, maybe they do but it’s not something  you wish to pursue? 

King Boo

So, off the bat, anything is an improvement because they will move.  HUGE.

However - an end game plan, if it can be incorporated with ease, without de-railing the move - is ideal.

A self standing Assisted Living will not meet the needs of a person with dementia (PWD) long term.  It may not even meet them short term.  Especially at Stage 6.  This is NOT their population normal.  First hard lesson - the term AL is a huge umbrella - that could mean 1 aide stops by casually when available for a check in once a day  - to more intense, high acuity Memory Care like services layered in.     Place in the wrong type of facility and you are back a square one - Mom without enough care.

Unfortunately, this could also place Dad at a disadvantage.  It can be very similar to middle school - those that are cognitively normal but physically frail in AL do not want to eat or socialize with advanced dementia, or those hanging on by their fingertips to AL.  It could be very isolating for your Dad, as well as your Mom.

QUOTE:  "  My dad is mostly excited about the freedom of being able to leave my mom in the care of others so that he can have breaks and not worry about her safety. "

This should give you pause.  If it's a standard AL, this isn't going to be that easy to achieve without extra cost - possibly a lot of extra cost.  With dementia needs still unmet.  Impossible in some types of AL.  

AL seldom permits a spouse to leave their PWD in a long period of supervised care - unless they have dementia specific day care, Memory Care wing, etc.  Your Dad may have unrealistic expectations unless they are a high support AL.  

The average stay in AL is less than 2 years.  So you will face a move for Mom into a separate facility entirely, with Dad separate in AL, or a double move for both of them.

You don't mention if the CCRC also has a nursing home - MC residents usually decline to need a nursing home (unless they pass sooner from other causes).  There is also usually the need for a short term rehab stay - nice if she can do it at the same community (though not always possible if no rehab bed availablility).

Some things to think about.   If finances are finite, you are also better getting into a CCRC, which often has a benevolant policy for those who have the required minimum number years of care that will let a LTC resident go into snf on Medicaid.   You don't want to spend all your money at a free standing AL or MC and then try and move into a nursing home penniless.   It can be done - just a whole lot less choice.  

ADH77

I agree that AL is not a good choice. Have you already met with them? I would be surprised if they would even agree to let your mother live there if she has advanced-stage dementia, since they won't be able to provide the care that she needs. And since it sounds like your father isn't able to either, I don't see that as a good solution. 

Depending on availability, and whether your family can afford it, have you tried to find a facility that has both MC and AL? There are many that do, and you might be able to have your mom in MC and your dad in AL in the same building (although I would assume different rooms/wings), which would allow him to visit her as much as he wanted (presumably). 

I don't know much about CCRC, but that sounds interesting and certainly better than AL. 

My own experience: I moved my mother into MC 3 years ago. Prior to that, I had been looking into AL for her, knowing that she really needed care--more than what in-home care could provide. Once I started meeting with AL places, however, it became clear they would not accept her, as multiple ones told me that her dementia was too advanced (and she was like stage 3 or 4 at the time). So we switched strategies to find a MC community, and moving her there has worked out so well.