husband in memory care

Judy W

I moved my DH to a residential memory care facility 5 weeks ago.  The home as 10 residents with 2-3 caregivers and a full time nurse.  The residents can move freely throughout the home and into the garden which is fenced in.  My husband is clean , well taken care of , and safe.  The transition seems to have gone fairly smoothly for my husband...he hasn't been overly anxious and did not need any extra medication.  However, I have seen changes in him.  He is more tired, less engaged and speaking more gibberish.  I know he has active times during the day but it is so difficult to see  him like this when I have limited time with him (every other day visits).   I did see  these behaviors at home but not as intensified.  Is it common to see a progression in the disease after these moves?  Thanks for any feedback based on your experiences.

SSHarkey

Dear Judy, anyone who goes through a big transition like this experiences an adjustment period. More so for dementia patients. It could also be that when living with him you became more “blind” to the issues, simply by being so familiar with them. You might has not been able to see the increasing degree. After being apart these five weeks you’ve become more aware of what you were  experiencing, seeing it from the “other side.” Just a thought. I know that’s happened to me in difficult situations. Someone has had to tell me to step back and “look”. Hard to do when you’re in the thick of it. Give him some time. Talk to the caregivers and see what they can tell you.

Tucsonbirder

Judy, I have experienced the identical thing.  I placed my DH in a very similar, and lovely, care home on April 1.  He has a wonderful private bedroom and private bath, and access to a covered patio, where he loves to sit.  He is somewhere in "moderate" stage.  At home, he was relaxed and content to sit in a chair all day and read a little, but basically do nothing.  Since placement, he has been much more active and engaged (they really help him do this), but he has also developed much greater anxiety, basically because he is apart from me.  They manage it well, distract him, and soothe his concerns, but it always returns.  He still uses a cell phone and when he is anxious, he calls me obsessively.  I don't answer.  He leaves a million voice mails, and eventually I return a call and reassure him.  It works for 30 seconds, then he forgets what we said, and it all starts again.  I never saw this at home, but I do think the transition to a new setting has both triggered more anxiety, but also that I didn't realize how far he had declined when he was home.  The familiarity of home allowed him to appear more functional than he really is.  I struggled a lot at first that I made the wrong decision, but now, I know it is right.  I am so much freer to live my own life (which we both wanted for me), and he is well cared for.  His decline was either there anyway, or inevitable, and he is now in the place where he be familiar as he continues down this sad road.  It was the right choice.  I hope you feel that, also.

Bob C

Glad to get this perspective. My wife is mid stage but decline is more evident--toilet habits, eats when bored, wakes at 4:00 AM which make my work day tough, need to coach her with knife and fork when eating etc.

Can see memory care with 6 months at this pace, but her anxiety is a BIG issue. Shadows me, and if does not see me for 5 minutes gets upset. A year ago I could give her what we called a ticket with my arrival time when I went cycling and zero issues. she was OK and knew how important exercise was to me. Now a non-starter..

Wish me luck, but like I see was interesting to read about your experience. 

Judy W

Bob, 

  Good luck as you continue on this journey.  That is how I felt several months  ago when I made the decision to place Clark in memory care.  ...I discussed with our children at that time that I couldn't see myself continuing at home care past 6 months.  

   Thank you everyone else for your comments....My visits with Clark are still very hard..and I still have moments when I wonder if I should have kept him at home with more care.  I miss him but I really don't miss the stressful situation it was causing for both of us.  This new normal, though,  is very difficult to accept.  

Stay well

Judy 

riajean

Invited to a Memorial Day cookout today with my DH and to take a tour around the facility I gave $$ to hold a place and meet the person I've been corresponding with for almost a year.  My husband got indignant, said he "didn't want to do this", looked at me with anger; the staff member pressed on with questions and I shook my head at my husband's growing intolerance.  We finally went out of the office into the courtyard.  The place is small, decorated beautifully, looks like someone's well kept and expensive home.  But, the people there are greatly affected, one was screaming and then my husband's repetitive rants, "I don't want to be here".  We left after all of a half hour and I had to then turn around my emotions, took him to a mall where we walked (with guidance) two floors and then out for a late lunch.

Now home, I'm devastated.  Mad at myself for even trying.  Mad at my husband for being sick.  Mad at him for blowing me kisses when lately I could care less.  Hard to go from wife to mother to care taker, and manage showers, dressing, up at night for hours tossing/turning; eating whatever he can find.  I'm so, so depressed thinking that's it. 

Maybe my son who lately has added to the pile of stress already larger than 10 stories by proclaiming we have a toxic relationship and I only think of myself.

Maybe dying is the best thing for both my husband and me.  Or, we both continue to go through each day, my doing everything for him, with a dumb a** smile on my face, just loving life and pretending my suffering doesn't matter.  Seven long lonely years into this "thing" on which we were bestowed.  Wonderful.  No way out.  No way to get out.  Maybe I do only think of myself.  And maybe this is the punishment.   Either way, I'm so angry and depressed right now, nothing else matters.

Pat6177

Riajean, I am relatively new to this site and I’m sure others have more experience than I to share with you. But I hear you and I’m sorry this nasty disease has got you down right now. I’m sure you have been a good care taker for your DH for these past 7 years. There’s no way you have taken care of your DH for 7 years if you only think of yourself. Sadly, you may have to make the decision for him to go into memory care regardless of what he says. For your health as well as for his. It sounds like you are in so much pain. And you must make decisions to take care of you. (((Hugs)))

riajean

Thanks so much Pat.  Grappling with this and trying to do what’s best for my poor husband.   More than hard.

Pat6177

Riajean, it’s good to hear from you. Remember that part of what is best for your DH is to do what is best for yourself. Like on the plane they tell you to put your own oxygen mask on first so that you will then be able to care for others. You may want to call the ALZ Helpline at 1-800-272-3900. They are available 24/7. You can talk with them about the decision and the process of placing your DH in a memory care place. I’ve not used the hotline but I do know that it always helps to talk things out.

Pinkscarf

Hi, my husband is also in memory care. He is 65 and was diagnosed two years ago. The problems started years before that, though. I am 58. He is my second husband. He has been in MC since October, though I was forced to move him to a new facility about a month ago, so he's had a big change. Anyway, my feelings about him being there and me being home are overwhelming at times, and I just wanted to thank you for sharing your experience because it helped.

sunshine5

I am so sorry that u r going thru this with your husband. U r not self centered, u r human. God will give u strength to get thru this. May be having some home help May lighten your work load!

Just one question- there is a hefty charge of $ 8000. Per month for memory care, how does one afford that? I don’t think Medicare would help.

riajean

Dear Sunshine, through research in my area, costs run between $7K and $5K and a new one east of me around $3,700 which is low in comparison.  Medicaid is not involved as each of these is considered private pay.  If I give them my DH's ssi and my meager early retirement ssi, I'd still have to come up with some $$, but they all accept VA aid and attendance benefits for which I have applied and will re-apply when my resources are lower.   The VA allows one to keep more $$ and that is so very helpful. 

My DH still knows me and that's my private battle.  He understands when the questioning begins where he is and what is going on.  He REALLY needs to be in MC because of late he's keeping me up at night - getting up 5 times within a half hour to visit the bathroom, then putting on his glasses, stirring, agitated, not sleeping, keeping me up and I WORK so it's very , very difficult to deal with the night games.  Literally begged him to go to sleep last night as I do often, saying, "please honey, just go to sleep".  Sometimes he just breathes hard, others times he says OK.  I just lay in wait for his breathing to slow, feeling confident he's sleeping before I can truly rest.

So very tired, I just want to sleep and feel OK and I know this is hard on him, but hard on me too.  He's so lost in our home, can't find any rooms, then insists he knew it was there, totally apathetic about anything he used to do, doesn't even fight when he sees me mowing the lawn, something he "owned".  There's no sense of what he was, who he was, what he was intent on doing.  He doesn't understand words or language.  He smiles and chuckles but at nothing.  It's so hard to watch.  That's the hardest part.  Watching the demise of someone I met 49 years ago as a kid. 

This bathroom stuff, if it gets worse, there's no way I can handle it.  Biding my time and God is good for keeping it from me, I know it's on it's way and then what will I do.  So torn because either way I lose.  Just want it all to end and ethical or not, I pray for God to just take him.  He's a good man and in my heart, the suffering has gone on long enough.  I'm not God though and don't have the right to say when.   Just tired and praying for God to recognize a good man and take him "home" sooner than later.