Who writes at 5 am?

MissBarb

Just joined this forum and have a problem I need help with as have been awake for hours.My DH has been in MC for a few months.  When I visit him all he wants is either for me to stay/live there with him or for me to take him out of there. He challenges me with endless questions from the moment I arrive until the time I can make an excuse and sneak out of his room. So my question is: what answers can I give, either lie or truth when he asks me to take him out, or when he asks when I’m going to retire  ( I’m 80 yrs old), etc? He’s impossible to divert, calls me out if I’m not smiling and who can smile in this situation?  He just keeps at the same questions over and over.  Each visit is so unpleasant and yet I still love him and do want to spend time with him.  It is just so frustrating and as you can see, keeps me awake half the night.  Help!

LadyTexan

Good morning MissBarb,

Welcome to the forum. Your situation sounds very stressful indeed. I haven't placed my husband yet. I don't have experience with what you are going through. I am sure other members will have ideas that may be helpful. This forum has been a lifesaver for me. The members speak from experience and can provide practical, actionable suggestions. 

The dementia journey is chaotic, unpredictable and exhausting. You are among friends here.

Again, good morning and welcome.

-LT

loveskitties

Hi Miss Barb,

Have you asked the staff at the MC facility if they have any recommendations on how to handle the situation?  They may have some ideas based on how they see his behavior when you are not there.

I am not in your situation, but can certainly understand the mixed feelings, when we can't "fix" what is bothering our LO.

I feel certain others will reply to your questions and hope that you find some which will work for you.

As for "who writes at 5 am?"....many of us who are kept awake trying to figure out how to live with a LO with dementia.

M1

There are lots of us who post in the wee hours, too.  Barb, I wondered also about talking to the staff---I would also ask what his behavior is like before and after you visit.  We have some posters who are "triggers" for their loved ones and who find it is better to stay away, as hard as that is.  At least for a while.

karwiy

I'm in a similar boat my friend. My DH was hospitalized with congestive heart failure, hypoxia and pneumonia in May and all of that worsened his dementia. He went from ER to ICU to subacute rehab and now to MC. Visits with him are rough. I always feel worse after seeing him but like you, need to be there nonetheless. It's brutal. He thinks he's fine and wants to come home. I've been counseled that even a visit home would be ill advised so I'm constantly having to combat that request. Nothing short of agonizing. Particularly in the afternoons when sundowning is a factor; he gets acutely confused and combative. He demands his wallet and credit cards with the hope of sneaking out the front door to jump in a cab home. I find that the best approach is to keep messaging brief and consistent and not altogether true. It's ok to be less than completely honest. I often say that this 24/7 care is advised and that we need to follow what is indicated; trying to get stronger every day. It's rough; no two ways about it. Be sure to take care of yourself and give yourself time and means to breathe.

harshedbuzz

My father was like this with my mom; he settled more quickly than your DH seems to be but he was also probably further along in the arc of the disease.

Some things that helped when he got stuck on her moving in/him getting out:

We posed the MCF as a fancy rehab prescribed by the doctor to help get him stronger and steadier on his feet, so we were able to divert by saying it was the doctor's call not ours. This also allowed her to honestly say she wished he were doing better and home with her. 

When he asked why mom couldn't move in, she said she'd need to sell the house and would need to stay to take care of it while it was being shown. After a time he came to believe she did live there but in another room; at that point she said she was waiting for a double room to become available.

In the early days when he was still aggressive and agitated with us, I made sure to go with her because I was better at redirecting and because he was "on his- marginally- better behavior" if I was there. He could still showtime early on to some degree, so we (and later mom alone) would only visit in public spaces within the MCF. Turning up at mealtime with a fast food lunch was a good diversion; he didn't like the healthy food they served. 

It was useful to never come empty handed. I always brought a treat from the outside- a hot coffee, milkshake, sports magazine which gave me something to which I could redirect the rant. 

The smile? That's hard. Maybe it helps to think of this as the role of a lifetime. The ability of PWD to sense the emotional temperature of a situation remains intact well into the disease process IME. Because they don't have as much control over processing emotion rationally and because they tend to become self-focused, it's a kindness to mask your unhappiness. But I do get it. My dad and I never enjoyed a warm relationship so putting on my game-face and pretending to be delighted was challenging, but it made him happier and more pleasant to be around.

HB

Lp57$

Hi MissBarb, so sorry you have to be here, but welcome!  My DH is not in memory care, but he is still at home.. As for the many questions, they still exist.. Where am I, who are you, I want to go home, are we getting paid??? It is a funny thing about dementia, he remembers that SS Check every month, but don't know me half of the time.  I had to start giving him fake money that looks real.  Here's the story "He ask for a dinner plate, I said what for? I have to put this money on this plate and put dirt on it so it will grow... I thought oh no!! So I made up an excuse that it was not planting time yet for that and we would have to wait until fall to plant.. He said oh ok, that sounds right...  He still took the plate to the bedroom, but I got it back... There are so many things that we all have to do help them and sometimes I get caught off guard, because it may be something different that he thinks of.  I hate the lies, but when I try to tell the truth he doesn't understand.. I have heard of some saying they are having renovations made to the house so that is why you have stay etc..  I am sure others will help, because I only knows what works for my situation, because everyone is different.. Take care, and know we are here for you!

MissBarb

Not sure how to do this….but thanks to all who gave suggestions on ways to answer my DH endless questions when I visit him. Let’s hope some of those ideas work so my visits can be more pleasant.  I just feel so sad and depressed to see him slipping away day by day.  He has lost 50 pounds over the past seven months.  I wonder how much longer this can go on.

Nowhere

Ask the aides what he does and how he copes when you’re not present. Perhaps your visits are upsetting and a reminder that he is not with you. My husband was placed in memory care last year and he “eloped” his first facility and has attempted at his second.  I’m considered a trigger to my husband’s exit seeking behavior. When I stopped visiting him he stopped breaking windows attempting to exit, and now oft believes I am a fellow resident. Only he thinks he (or sometimes “we”) is at work, in a hotel, or in someone’s living room. I’ve had to let go, and our daughter does the visiting on both of our behalf’s. I knew placing him would be hard, but had no idea it would mean not seeing him. I’m told I’m helping him by “stepping back for now”, but, being married for 48 years I know that his dying breath will be spent wanting to be free of locked doors and fences. It’s so sad!!

Jo C.

That is a difficult dyanamic; makes visiting a chore rather than a loving time. 

What I learned very quickly was never to visit my Loved One (LO) in her room. When I did, there were all sorts of demands and difficulties.

All visits took place in the activity room where other people were.   For some  reason, this made visits much calmer.   I also kept my visits a bit shorter.  If something began to slide sideways, I would realize if I stayed it would ramp up.  So, I excused myself to "use the restroom," and notified a care aide I was leaving and my LO would need to get back to the room or get engaged in an activity..  My LO never commented on my having left.  Did not miss a beat.

In the beginning, I had to cut down my visits to three times a week until things settled a bit better. 

We learn as we go as we fly by the seat of our pants.

Best wishes,

J.

MissBarb

To Nowhere and Jo C.

Just saw your posts which give an interesting perspective to visiting my DH.  I think that if I could arrange to visit him outside his room that it would be a better visit.  However, with Covid we're required to visit in the rooms., which gives him license to badger me with questions I can't answer.  I do try to leave after an hour----do you know how hard that is to break away??  I have to come up with a false story which then makes me feel like crap.  Perhaps my visits do upset him, even though he asks the staff endlessly "when is Barb coming".  It is a no-win situation this disease.