long stay memory care

Crushed

October 24 marked 5 years in memory care for DW and more than 4 years since she had any idea who I was

Just wondered who else was dealing with long stay/ long non recognition   

toolbeltexpert

Great question crushed, although I am not in that place I look forward to the responses.

Rick4407

My DW is not in MC yet.  But she has not known who I was for about 3 years.  Occasionally she will call me "Dad", but even that is rare.  When asked directly what my name is she answers with a non sequitur.   She remains friendly and cooperative within the scope of her ability to understand.  Simple directions "lift your foot" are well beyond her.  She's entering stage 7.  Rick

Marie58

DH has been in MC 2 years and 2 months. 

It's hard to know how long he hasn't known me. Probably hasn't known me as the love of his life for at least 3 years. Sometimes I think he knows I'm someone who's a part of his life, but not really who I am. 

Beachfan

DH’s one year  anniversary in a MCF (Nov.12) is coming up.  I was able to keep him at home well into progression; he hasn’t known who I “am” for several years now.  He didn’t know me, but I think he knew I was supposed to be here.  That is completely gone now.  There is no spark of recognition for me or for anyone; no reaction, no reciprocation, just a shell.  

Our 7 year old granddaughter has the right outlook.  I was trying to explain to her recently that when she visits him (she hasn’t yet), that he might not know her.  She never skipped a beat.  “That’s okay, Mimi, he will remember me in his heart.”

Chammer

1. My MIL w AD was our first PWD.  She and FIL relocated from MN to TX and moved in next door for the last year and a half of MILs dementia journey.  MIL always spoke of how "that nice little girl from down the street'" came to see her.  It was my then 14 yo daughter.  She would pop in every afternoon to check in on her grandparents after school.  DD was happy that her grandma "knew" her even if she didn't know who she was.  It was the same for me.  I was someone who was safe even when I was totally p*ssing her off by making her change her depends and go to bed (and she could be mean when she was upset which was daily LOL).  I was probably her least favorite DIL, but in the end when the rest of the family (including DH) was running around sobbing and wringing their hands because "this all happened so fast " (ummm...no...you just weren't here for the day to day or actually anything or any help), my kids and I were able to feel that she did know us in her heart!

Joe C.

DW will hit the 1 year mark on November 13th. Other than AD she is in perfect health and I think we are in for the long haul. She has not understood our relationship for several years, I am her friend, father, brother and on a rear occasion she will still come out with my name. She is happy and well engaged at the MC as she enjoys having a lot of people around and loves to sing & dance.

Jeff86

I could have written Rick’s post.   Still caring for myDW at home, so far, but she hasn’t known my name or our relationship for three years.  Mostly I’m someone familiar and friendly but sometimes there’s complete non-recognition.  Late stage six for an extended period of time, very good health other than the elephant in the room.

A. Marie

Today marks 1 year and 5 months since I placed my DH in skilled nursing (on June 2, 2021). His condition has deteriorated in these ways since his admission: He has lost continence and almost all speech; he has been in a wheelchair full-time since a bout of COVID that went through his ward in late April this year left him too physically weak to stand or walk; and he seems to recall me through auditory and muscle memory only (there has been no overt recognition for months). 

All that said, however, his general physical health and his appetite are good, so there's no telling how much longer he and I may be in limbo. My heart goes out to all the rest of you who are in limbo likewise.

A. Marie

P.S. to my first comment: I forgot to mention our ages. I'm 67 and DH is 73. And in hindsight, DH began showing symptoms 11 years ago, so we're among the ranks of those for whom any retirement plans we had went down the tubes early.

Also, it was jukebox morning on DH's ward when I visited today. The jukebox selections are reflecting the changing demographics on the ward (they're now boomer music instead of 1940s hits), and we had the following in rapid succession: "Big Girls Don't Cry," "Jailhouse Rock," and "Rescue Me." The choices can't possibly have been intentional, but they seemed appropriate to me.

CStrope

Crushed, I can't believe it's been 5 years for you.  If you don't mind my asking (absolutely no judgement here), what were her abilities when she was first placed?  How did you make the decision that it was time.  I'm beginning to feel like DH will get placed when I can't deal with it any more rather than when he has reached a specific stage.

June45

Beachfan wrote:

Our 7 year old granddaughter has the right outlook.  I was trying to explain to her recently that when she visits him (she hasn’t yet), that he might not know her.  She never skipped a beat.  “That’s okay, Mimi, he will remember me in his heart.”

Precious...she is an old soul!

JoseyWales

We're only at 8 months since placement, I can't imagine 5 years. I feel like I'm in limbo, and having a hard time getting on with life. 5 years of this.... Crushed I feel for you and your wife.

Crushed

CStrope wrote:

Crushed, I can't believe it's been 5 years for you.  If you don't mind my asking (absolutely no judgement here), what were her abilities when she was first placed?  How did you make the decision that it was time.  I'm beginning to feel like DH will get placed when I can't deal with it any more rather than when he has reached a specific stage.

She was placed at 65 because she was deeply  psychotic  (mirror self mis-identification) and very aggressive wandering. She still had an interest in sexual affection, and knew who I was, but her "situational awareness"  otherwise was zero.   She could walk right into the street in front of a car. She had no skills  other than feeding herself.

She had never cooked so I had no worry about the stove.She would sit in the kitchen while I cooked  and sit near while I d laundry. We renovated the house for her to make it safe
We had always taken showers together and I would get her dressed.  I could drive and  take her hand and take her places  e.g.  lunch dentist but left alone she would take off like a rocket  
She liked all little children but had no idea that some were her grandchildren.
When she was told the MC was her new home  she accepted it immediately
  

Cherjer

Thank you Crushed for clarifying your wife's placement. So heartbreaking for you and your family.

I think about placing my DH but he is "healthy" despite AD. I think he fits into stage 7...have caregivers here at home several times a week. MC is SO expensive and we do not have LTC...My DH always said we can pay for our needs in old age! Never thinking we would be dealing with AD! We do not qualify for Medicaid...knew that years ago but the thought of years in MC would be wiping out our savings as we are talking about hundred's of thousands of dollars. 

It is so difficult...I have absolutely no patience with my DH when he screams  at me when I try to to do anything with hygiene. 

I live in Orange County, CA and know we have good facilities here but price is so high. My DH was an aeronautical engineer and brilliant. Now he can do absolutely nothing...except he still can walk and sleep at night. Other than that, totally dependent on me for everything.Cannot be left alone for even a few minutes.  

Crushed

Cherjer wrote:

. MC is SO expensive and we do not have LTC...My DH always said we can pay for our needs in old age! Never thinking we would be dealing with AD! We do not qualify for Medicaid...knew that years ago but the thought of years in MC would be wiping out our savings as we are talking about hundred's of thousands of dollars. 

I will not mince words about the cost of MC.  It is staggering.  But get medicaid adivce now
WHO TOLD YOU YOU WERE NOT QUALIFIED FOR MEDICAID 
 
 You need an elder care lawyer no one else is qualified.

Cherjer

Crushed..did contact an Elder attorney years ago...not interested in spending down our assets. Just did not seem like this would be an option for us.

Donr

Cherjer wrote:

Crushed..did contact an Elder attorney years ago...not interested in spending down our assets. Just did not seem like this would be an option for us.

There are other methods to qualify for Medicaid like a Miller Trust. It might be time to have an appointment with a new CELA.  You mentioned that your last appointment with a CELA was years ago. The rules for Medicaid do change over time. 

Cherjer

Thank you Donr and will check this out. It was awhile ago when I briefly saw a CELA and that was just when my husband was diagnosed. I just thought our lawyer was sufficient but now the reality of MC is so close hope this is not too late to see an elder lawyer.

JulieB46

Crushed, I’m not dealing with 5 years of MC, but I guess I’m dealing with 7 years of losing my spouse and relationship. I also am pretty sure I’m going to have to place my DH, even though I’m not sure how to pay for it or what I’m going to do when that happens.  I have read your posts for a few years. I’m my husband’s second wife.  I know he loved me, but I don’t think it transcends his Alzheimer’s.  How did you know when it was time to move your wife to MC?

elainechem

About Medicaid eligibility: I recently learned from a very experienced CELA that a person in my state, New Mexico, can qualify for the Medicaid waiver if they put all their assets in the name of a disabled child WITH NO PENALTIES! And I just happen to have a son with autism who receives disability benefits under his late father's account. And he's very responsible with money. Interesting...

Crushed

Cherjer wrote:

Crushed..did contact an Elder attorney years ago...not interested in spending down our assets. Just did not seem like this would be an option for us.

OFGE

"In case you missed this good news, it is worth repeating. California’s final 2021-2022 budget includes the elimination of Medi-Cal’s asset test! This is a huge win, and one that California Health Advocates and many advocates across the state have been working on for a long time.

The asset test elimination will be phased in over 2.5 years. First, as of July 1, 2022, the state will raise the asset limit in the Medi-Cal programs serving older adults and people with disabilities to $130,000 for an individual and $65,000 for each additional family member. This huge increase should allow many people to get on or stay on Medi-Cal without having to impoverish themselves. Then, no sooner than January 1, 2024, the state will eliminate the asset test completely. These changes will expand access to Medi-Cal for approximately 18,000 new beneficiaries and improve access to benefits for almost 2 million Californians currently on Medi-Cal."

https://cahealthadvocates.org/medi-cals-asset-test-to-be-eliminated-by-july-1-2022/
  

  

Cherjer

Thanks for that information, Crushed>

JJAz

Cherjer wrote:

..did contact an Elder attorney years ago...not interested in spending down our assets. Just did not seem like this would be an option for us.

Hmmmm.  If you're praying privately for home care and/or residential care, you're spending down your assets.  Using an attorney to prepare a plan ensures that you keep as many of your assets as is legally possible.  That's a good thing, not a bad thing.

CStrope

Crushed thank you for your explanation.  My DH does not wander at all, in fact he has no desire to go anywhere or do anything.  He just sits, all day every day, sometimes with the tv on (if I put it on for him), other times he just sits and pets the dogs all day.  

I am told he has a logopenic variant, so his language skills are terrible.  Everything he says and does is like that of a 3 year old (at least he's still potty trained!)  He will ask permission to get a snack, or a soda.  He will show me his plate when he's done and ask if he did good eating.  He basically needs me to tell him when he needs to do something, and expects me to do most everything that needs to be done.

Other than the fact that I'm now married to a toddler, he is not a danger to himself or others.  It will be interesting to see what changes will happen that will require me to place him.

This darn disease affects everyone so differently......I hate everything about it.