quality of care or close to family?

Becksoderberg

Hi,

My mother lives alone in Maine with AD, she recently scored a 9/30 on her MOCA.  We have a caregiver coming to the house 5 days a week from 1-7pm, and then I drive up on the weekends to care for her.  She has lots of friends who check on her, and take her out for walks regularly.  

The decision on where or when to move her to MC is weighing heavily on my mind.  There is an Eden Alternative option near her house that I love.  Near me, in NH, there are only larger corporate models of MC.  

Is it better to have a quality place of care (Eden Alternative model) and only be able to visit on the weekends?  Or do I move her closer to where I work (2 hours away), in a corporate model of MC, and I will be able to visit more, but she is isolated from everyone else she knows?

Or do I keep her home as long as possible, knowing that it is potentially unsafe, but at least she is home, with her dog?  Safety or quality of life?

Appreciate all opinions!

Becks

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RobOT

Hi Beck.  I can only speak for myself, but I will add that I worked in therapy for decades in skilled nursing facilities.  In your position I would opt for the Eden Alternative.  Even if friends aren't as attentive--and I would bet many would at least visit if they've been doing things like taking her for walks--there would be many people around to socialize with.  Given her advancement in ALZ, she's likely going to recognize known people less, and will respond to her present, existing situation as it comes.  A good corporate MC can be great, but in my experience it's hard to find that, and hard to figure it out sometimes, too.  You can probably be there just as much as you are now with the Eden Model.  At home, she's just not safe anymore.  Think how you would feel if she fell in the night and stayed on the floor for hours.  As I said, I can only speak for myself.  Possibly you could make one of those "Pros and Cons" lists and see how the formula works out for you.  Whatever you decide be good with it.  It's obvious you're doing it for her best interests.

jfkoc

Hard decision. I would  make a thorough investigation of alternatives near you to see how they measure up next to the one near your mother. 

I would also make a thorough investigation on the Maine facility which is based on the Eden care philosophy but not an Eden facility.

The decision may be easier than you think.

added...I was not familiar with Eden Care so looked into the Vicarage which stated it was the only facility based on Eden care. It looked very nice but the photos made me fearful for persons needing memory care.

Becksoderberg

Yes, I loved the vicarage when I visited , and was impressed by the director.  What am I missing from the photos?  Maybe I am dreaming that she would love that place and it is going to make the transition to AL easier because it is so pretty?

Becksoderberg

I think her friends will visit when she moves into AL.  But I know deep down family is the most important.

harshedbuzz

Becks-

This is always a very individual choice, but when it was mine to make the answer was "near me". 

Some thoughts-

1. IME friends don't continue to visit. When my aunt went to MC initially she was also in Maine. Her BFF, with whom she stayed when her utilities were cut off for non-payment, was also diagnosed with dementia not long after and went back to NJ to be near her family. During dad's time in MC, not a single one of his friends stopped by. Even his beloved brother only managed a drive-by visit every 4-6 weeks. I purposely chose a MCF in uncle's town so he couldn't claim I made it inconvenient for him. 

2. As the disease progresses, you will likely get emergency calls that mom fell or developed a UTI and is being transported to the ER where you will need to meet her. Or you'll get the call that she was found unresponsive and have a 2 hour drive ahead of you. 

3. I know it wrenching to pull a LO out of their community. Dad always reported dinners out with friends as well as swimming and golf at the club. I later learned from neighbors when I packed up his Florida house that these were activities in which he hadn't participated in years. 

HB

jfkoc

It is a beautiful place!

The photos showed a lot of  outside pictures....talk about the beautiful lake, trails and paths not meant for walkers or wheelchairs. people sitting outside behind a fence easily climbed over, uneven stone patio for  exercise etc. 

 Memory care is really a lock down situation with access to outside only by an enclosed patio. While the philosophy is great and the facility is beautiful please made certain the facility is for your mother who is going to need memory care now or in the near future.

If it is only for AL you might consider placing her know that another move is in the future.

Again, it does look wonderful.

King Boo

Things need monitoring at even the best facilities.  This is impossible from a distance.

You are at a crossroads of change no matter WHAT your decision.   Move her close to you to the best facility you can find - one that has MC and a nursing home gives you growth room and fluidity for the future if possible.

From a distance, the chips fall where they  may.  You will be making life and death decisions from a distance.  You will eventually burn out from the travel.  I did.  Crisis' and problems do not limit themselves to weekends.

It's also nice to be able to visit without being sucked dry from a distance.  This goes on for  years and years and years. 

Plus,, when she needs a nursing home, you're gonna have to do it all over again.

Move her near you.

Some CCRC's accept to MC/SNF's.  

RobOT

Hi, I wanted to add something to my post, especially after reading some other, very wise posts here.  I am only familiar with Eden as a theory for the practice of nursing, and it may not completely apply to memory care situations.  I was under the impression that the place you were looking at had a memory care, and recommended it on that basis.  So much for assuming, right?  Sorry about that.  I DO know one of the best ways to find a good memory care is to talk to the family members of patients in a facility.  Good luck with your search.

King Boo

I know nothing about this place; but it is an example of what I mean.  Most residents enter healthy and then progress through the levels of care; but this place allows for direct entry to Memory Care and also has a nursing home.

As I said, I know NOTHING about this facility, just an example.  I though of it because they took over the excellent facility my LO stayed at, though it was just a bit before we were done there.  

https://kah.kendal.org/living-options/pricing-information/

Becksoderberg

Thank you for all the insight on this decision.  The distance and driving is already wearing me out, and my kids miss me on the weekends.  

King Boo

I had young children during my journey too.   Kids first.  A lot of dementia care is ongoing and it helps greatly to 'delegate' it to a good facility.   You can visit and be the daughter, and the kids can do some nice visits too.

Someone once told me - there are no perfect answers, only best as choices.

Cynbar

As her dementia progresses, friends will visit less and less. And, your mother will be less able to participate in things like walks or luncheons. I agree with the advice to move her closer to you. I don't think she will benefit from being near friends for too long, family is most important now. You need to be able to get to her quickly if there is a problem or crisis, you need to be able to visit regularly as she declines. And you need to be able to "pop in" to monitor how things are going , so the staff knows you are always on top of things. Your mother will benefit most from having you close by. Plus, your children need you, and the drives are already exhausting. Find the best facility near you, it makes the most sense for everyone in the long run.

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dayn2nite2

I vote close to family.  I really don't care how awesome this place is, I'd put her in a "corporate" facility close to me where I can keep tabs on what's happening and I can handle any emergencies that arise.

MN Chickadee

Another vote for moving her near you. Not only do many friends fall away (I can count on one hand the times my mother's friends have visited her in memory care the last 2 years, despite her being very social before.) The biggest thing is being close to the POA. You need to be there often to oversee care, and it is absolutely true that eventually she will decline and sooner or later you will be getting calls all the time. That means you are driving in the middle of the night to reach her in the hospital, and having a PWD alone in a hospital when they cannot accurately report their information or make decisions for themselves is not good. My mother entered MC two years ago physically healthy as can be and I have still been in the ER with her at least 5 times. Falls, a totally unexpected seizure, infections. She is almost a half hour from me, and even that seems like too much a lot of the time. I absolutely wouldn't go farther if I could help it. The driving will get old even under normal circumstances just to visit, but the emergency drives will really wear you down. I personally would rather get her settled into a place near you where she can adjust and never have to move, or not until the very end. Some corporate places are ok. We chose one that has many locations in the midwest, and have been extremely happy. So perhaps there is one by you that would be ok.

harshedbuzz

"Corporate" isn't necessarily a dirty word. 

My dad's MCF was part of a large nationwide chain of MCFs and SNFs. I toured a dozen places from religiously affiliated to government run and found you really have to focus on how an individual location is run. Dad's MCF had a well trained staff who'd been there for years. He got excellent care. 

Another consideration that may or may not apply to your mom's particular situation- if she may outlive her assets, it would be a good idea to place her in a facility that will accept Medicaid should that become a reality.

jfkoc

Thank you for all the insight on this decision.  The distance and driving is already wearing me out, and my kids miss me on the weekends. 

In lght of this additional information I would definately look for placement close to you.

I would take a look at this if it is close to you

https://edgewoodrc.com/