they say you'll know

newbloomer

I have read and read on this forum and learned so much from all you and your experiences. I never felt I needed to post much  because most of my questions were answers from the forum.

Now I am in my own dilemma.  DH is still fairly easy to take care as far as personality. It is getting much harder physically to take care of him though. Have to have an eye on him at all times. 

It’s getting him to toilet and getting to bed that physically drains me.  And his behavior when the light goes out, meaning his sun downing, delirium, hallucinations drains me mentally.And when he wanders. Especially if he wants to go outside.  His sleep pattern is erratic so I get bits and pieces of sleep. I am really close to placing him BUT, it is the good parts that hold me back.  When he knows me he tells me how pretty I am and that he loves me and always hugs me. And when I put him to bed at night I always give him a kiss and hugs.  What will he do when in MC. Who will kiss and hug him and kiss him goodnight every night.  This is the part that just breaks my heart about placing him. My whole family, kids, friends are in support of placing him although they are not encouraging it. They are leaving it up to me. I’m so lost in this. I don’t know. 

Newbernian

So sorry to hear of your struggles, Newbloomer.  Have you discussed your  problems with DH's Doctor?  There are different types of meds that may be able to help this situation.  There may be some trade-offs with side effects but you are the only one who can decide what works for you and DH.  Don't just rely on reported side effects.  You and DH need to due your own trial.  All of us have different reactions to different drugs.  You won't know your truth until you try.  Warm Regards through this trying situation.

Beachfan

newbloomer,

Your story is my story, to a certain extent.  My DH was diagnosed in May, 2010, but, looking back, showed symptoms for some time prior to dx.  I have cared for him 24/7/365 since diagnosis and always described him as an "easy Alz patient".  Little by little, I became tired of the day to day ongoing care I provided; I felt like I had no life and he was "gone" for all intents and purposes.    I researched MCF's for two years, just in case, and used every excuse in the book to avoid placement: COVID, unnecessary expense (I could do it all, just fine), I would miss him, he would languish..... on and on.  I involved the kids, close friends and relatives in a long, ongoing discussion around a respite stay, more for me than for him.  Long story short, I placed him on November 12 and am still navigating the waters.  It took the kids pointing out that he was such an easy patient because I made it look so easy.  Caregiving was all I did, ever, at the expense of family life, social interactions, etc.  

I have no advice for you.  My only positive takeaway is that I waited long enough and cared for him long enough here at home that he is so compromised that he does not miss me, the kids, the grands, our home, nothing.  He is not "here" any longer; he is "there".  It's a horrible, horrible situation to be in.  I will pray for you; for all of us!

Ernie123

When it was time to place my DW two years ago, I was torn and could not make the decision myself. Thinking emotionally by myself the answer was no. Thinking logically and following the advice of my Alzheimer’s counselor, my children and DW’s psychiatrist the answer was yes. As caregivers we reach a point when we are challenged to our limit. To try and continue on our own becomes dangerous for our LO and ourselves should a crisis arise, which is all too common as delusions may escalate, physical abilities change.

Based on my experience, the move will be much harder on you than him. Once in the more social environment of the MC facility, my wife seemed to improve. The staff there are angels who provide loving compassionate care and activities every day. I could not duplicate that at home. You can give hugs and kisses when you visit. But be prepared for the day when the hug may not be reciprocated. My DW will stand for a hug when I visit, but I get no real return hug. She has become very apathetic and unaffectionate, which is not unusual I understand  as the disease progresses. Living alone is a challenge for me but at least I know she is getting the care I could no longer safely provide at home.

June45

I share so many of the thoughts that the others have posted here about placing.  Every. Single. Day. I want to place my husband, but like you newbloomer, my husband knows who I am and thanks me for taking care of him.  However, he needs everything done for him now which is, like you said, very physical at times.  He is also home bound which means I have to get a caregiver to go anywhere even for 15 minutes. I have gone out to the mailbox to come back inside 3 minutes later to a problem.  And I also lose sleep every night.  He is up 2 -3 times at night because his incontinent underwear is wet; or he wants to go to the automotive store to buy wiper blades; or he is wondering "what is going on" (at 2:00 am) and the list goes on.... (He doesn't wander though.)  I am becoming resentful towards him because of how much disease has taken away from us. One of these days I will get the guts to place him.   My daughter whose coworkers are nurses told me that they are amazed that I am still caring for him at home after hearing all that I do for him.

Crushed

DW accepted placement easily but she was very far gone.   Within six months she no longer recognized me .  She has been there 4 years. Harder on me than her .

Doityourselfer

I totally agree with "they say you'll know" when to place a LO.  We are not at that point yet.  I will know when and if it's time.  

My husband is in the severe stage of AD but is slowly mobile with me leading him from one room to another, and can still stand in the shower.  Surprisingly I've gotten him into the shower every day this month.  His agitation has lessened because he sleeps/stays in bed much, much longer. He's in bed between 1:30pm - 3:00pm (which leaves me with a lot of time for myself, thankfully).  His waking hours are shortening as the months go on.  I know there will come a time when he is no longer able to get out of bed and I will contact hospice.

When it comes time to change his disposable briefs, he usually gives me a hard time.  That's one of the most difficult tasks for me because he gets agitated, curses and claps his hands.

A big change this month is that I've been feeding him lunch and dinner.  He will still feed himself breakfast most of the time but is unable to pick up a plastic cup or a water bottle.  I know there will come a time when he is totally unable to lift his hand to feed himself.

You will definitely know when it's time.  

Stuck in the middle

newbloomer wrote:

It’s getting him to toilet and getting to bed that physically drains me.  And his behavior when the light goes out, meaning his sun downing, delirium, hallucinations drains me mentally.And when he wanders. Especially if he wants to go outside.  His sleep pattern is erratic so I get bits and pieces of sleep. 

Newbloomer, you can't continue without sleep.  You need help, someone to manage the night shift while you get some sleep.

When he knows me he tells me how pretty I am and that he loves me and always hugs me. And when I put him to bed at night I always give him a kiss and hugs.  What will he do when in MC. Who will kiss and hug him and kiss him goodnight every night. 

You will, when you visit him.  Not just when he goes to bed, maybe, but you will still love him.

Best wishes, whatever you decide.

billS

Wow newbloomer thank you for starting this thread, I stumbled upon it while getting ready to write something similar. My wife is cheerful most of the time, but often quite anxious due to her delusions. She can make friendly chit chat with friends but most of the time cannot find words when asking me a question. I now have to do almost everything from banking to toilet cleaning, while all day long she asks me unintelligible and incomprehensible questions, constantly interrupting as I try to juggle all the balls. And lately now and then she has had "urination issues". 

But at the same time we live in a peaceful rural area with great caring friends and neighbors. I hire a caregiver for 4 hours twice a week, plus her women friends very generously extend those hours. At this point my wife and I are managing OK but her dementia is declining steadily. So I'm getting the message that at some point I will no longer be able to keep her safe and really need to get ahead of the curve by investigating options. At this point I think placement is a year or three in the future, but who knows and I really need to be prepared for the day when "I'll know".