“Don’t Put Me Away”

Jeff86

That’s what my DW said yesterday, completely out of the blue.

With a lot of folks here lately confronting potential placement, the issue has been much on my mind.  But not in my speech!  I’ve never mentioned this possibility to her.

DW followed up that imperative with, “I don’t want to be put away.”

I recall a Teepa Snow video in which she warns caregivers not to promise their LOs that they won’t put them in a facility, as it will make it that much harder if placement becomes a necessity.

DW is late stage 6.  Some issues with anxiety, no memory, no executive function, needs help with most ADLs, urinary incontinent, often doesn’t know who I am or my name, doesn’t recognize our home as such.  Still, she is comparatively easy to care for.  She doesn’t express anger or aggression, is mostly loving and tranquil, doesn’t pace, sleeps through the night, doesn’t wander, and so on.  And we have the most wonderful loving aides, truly angels, and that allows me to continue to work.

So I’m sticking with Plan A, caring for my DW at home.  But should her health needs (or mine) force a switch to Plan B…the bar has gotten that much higher, with my DW’s clarity in the midst of AD about her fervent desire to remain at home.

M1

Tears at your heartstrings Jeff. I'm glad your plan A is sustainable for the time being.

Ed1937

Jeff, this has to be one of the hardest things about dementia. We are not as far along as you, but I've certainly been wondering what I will do when the time comes to make a decision. Some days it seems it won't be long before that happens, and other times it seems like I shouldn't even be thinking about something like that. Whenever you make the decision, and whatever it is, don't second guess yourself. It will be the right thing to do. We are always here for you.

piozam13

DH too always said  'that's not for us' whenever he saw these ads on TV.   So my plan didn't include placement.  In as much as we didn't have long term care insurance my plan was to take and live  overseas where 24/7 nursing care was affordable.

But HE had other plans and called DH to join HIM before the stage where I could no longer care for him.  

  

Quilting brings calm

During all of 2020, my Mom’s biggest fear about her decline was that she would be ‘locked away’.  She was ( and is) in an ASL,  so she meant a locked MC unit or a nursing home.  Her long term family doctor made her a promise of ‘not on  my watch’. He plans on practicing 7 more years. I didn’t make that promise   

For the last few months, she’s been intermittently asking me why I don’t put both her and Dad in a nursing home. The answer I reply is that they aren’t ready for one.  Like your wife, my Mom is aware of her issues.  She’s afraid of what is to come but she recognizes that the combined health issues of both her and Dad, along with my husband and sons’ is weighing on me. 

My Mom is late stage 4 at 83. I really hope she passes away before late stage 6.  It’s what she wants.  She watched her Mom die with late stage dementia at 97. 

Bhopper

The only thing I know is I don’t know the right answer everyday we have a new challenge. Some days it’s recognition of people in places but their lapses in time is getting more and more pronounced if I am not right here to handle everyone of her requests it’s a problem. I like many other’s have set several goals in time and thankful that we have reached several including our recent anniversary I had really hoped to make Christmas but I don’t think it’s a reality she has begun to wonder when no one is looking and gotten outside the gate a couple times I have now I had to lock the gate which angers her but she has let our little dog out three times in the last four days that in addition to several other declines that seem to have come from nowhere I fear we will not make September I hope that you canContinue to have the peace and care at home as it has been a blessing for me for the last five years to keep her at home but for me I believe it’s gotten to the point were putting her true safety in front of everything else it’s time. I wish you the best and as many pleasant days and hours as you can have

Paris20

When my uncle (mother’s brother) was diagnosed with early onset AD, he made his wife promise never to put him away. She kept her promise and it nearly killed her. She was never the same physically or emotionally.

My husband has made no request like that to me despite his Alzheimer’s diagnosis, which he has not been able to accept from the beginning. I do have an unwritten list of possible symptoms that might lead me to consider memory care for him. Not knowing me or members of the family would be top on the list, given what I’ve been through so far.

I know it may sound cold, even calculating, to have these thoughts but it’s all part of the reality of dealing with this disease. I was hospitalized this past winter because I was trying to care for DH alone, despite friends and family warning me not to do so. I learned my lesson the hard way, but I no longer think this disease has affected only my husband.

banpaeng

Well I had to place my wife today in memory care.  She ran away today for over the 15th time in the last 6 weeks.  We did do the UTI test.  The other issue is anger, never being still and the list goes on.  I to was one of the "I got this" and have been saying it for years.  In December 2020, things changed as issues arose rather quickly.

This today was one of the hardest things I have done.  I feel like somewhere between dirt and Whale Poop.  

Quilting brings calm

Babpaeng - 

You had no choice. Running away puts her in imminent danger.  

Please do some self care now.  Early  to bed, late to rise, whatever hobby fills you with peace and joy.  You will still be involved with your wife’s care. 

Joe C.

banpaeng, Please don’t be hard on yourself, you did the right thing for your wife. I can certainly appreciate your emotional struggle but when the time comes I hope I have your courage to do what is necessary.

Stuck in the middle

You do what you have to do, b.  The PWD isn't the one who has to make the decision, the person with the functioning brain who loves the PWD is.  It is your job to see that she is safe, and you are doing it.

It is neither cold nor calculating to plan ahead, Paris.  It is what adults do.  

JoseyWales

Early on DH and I discussed what would happen when he got worse. He always knew I wouldn't take care of him to the end, and didn't want me to. 

Fast forward to now, and he'll often say things like "You're not going to get rid of me, are you?" and "Don't leave me somewhere." I tell him now that I won't and I'm taking care of him. But I know it's not forever, one day I'll have to. I feel like I'm lying to him. But the real "him" knew the plan a long time ago. This new "him" just lives for the moment. I try to make all the right now moments stress free and happy.

David J

I just say “You and I are together and I will always take care of you”. I’m not lying. No matter what happens to her or to me, she will be taken care of.

Lorita

Hi Jeff,

 We've all read stories about nursing homes and have heard what could happen in them. Your wife is probably thinking about that.  None of us wants to go to a nursing home.  But, think of it this way - when the time does come (heaven forbid) that you do need to place her, those thoughts will most likely be gone and out of her head.  At least that's what I thought about placing Charles.  I never did but we had applications in to several of our State Veterans Homes.  He knew it but never mentioned it.  I did receive a couple of calls to tell me there was a vacancy but I never accepted.  Those calls were like a punch in the stomach.  Maybe when she says "don't put me away", just reassure her that you and she will always be together and you will be in spirit.  Hopefully, the time won't come for placement and you'll be able to keep her at home with you..