I get afraid you're not coming back

An electronic picture frame mounted too high for her to reach, with photos of you and other beloved family members scrolling? Or even a flat screen monitor or tv screen mounted on the ceiling above her bed, that’s turned on/off at waking and bedtime? I don’t know if that would be allowed. I’m picturing something like at my kids’ pediatric dentist’s office above each dental chair (used to show movies for distraction). I don’t know, though, if it would be more distressing to your partner. I hope you figure something out.

I was thinking about the digital photo frame. Is there a version that allows a pre-recorded message to be played if she (or an aide) presses a button? You could then have your voice and image saying "I love you! See you soon!", "I'll be back", or even "see you tomorrow, or in 2 days".

Also, I don't know if you have tried this, but I recall some members used to have an ipad or some device where they could check in on their LOs in MC. They could actually visit virtually, or just observe. They did not have to talk to them, or they could. Maybe it could be mounted high up in the corner near the ceiling and she would not try to remove it?

My heart goes out to you both. To us all. It is just so hard, no matter what.

DH also is very afraid of being left there alone and without me. He is cognizant enough that I brought in a "dementia clock" that displays the day of the week, time of day (morning, evening, night, etc.), and the date. I also brought in a whiteboard where I wrote "Wife's Next Visit:" and then write the day of the week and full date of my next planned visit and put it right behind the clock so he can see both at the same time. So far he is able to reconcile the two since he has the clock for a reference point. It also helps the AL staff to be able to tell him when I plan to visit next, since he asks everyone he sees "Is my wife coming today?" I realize that your partner may not be able to use this system if she has no concept of passing time or cannot count from the day or date on the clock to the day or date on the whiteboard.

I haven't brought in pictures of myself mostly because I haven't been on the "wrong" end of a camera in many years. Not even sure that he sees the image in a photograph accurately. I think for DH it is more a matter of my actual physical presence and that a picture would not comfort him.

Have you tried bringing in something with your scent, perhaps a piece of unwashed clothing or a pillowcase? I know they use this concept with babies in the NICU to help them bond with their mothers.

I'm sorry I don't have anything better to offer. I truly feel for you and her.

M1 My DH will not read a white board, but will read if I leave a sticky love note instead. I am new at this and hope you can find a way.

For Christmas, my DIL gave DH a nice soft blanket with with family photos imprinted on it. She uploaded photos on Snapfish and requested they be put on the blanket, but she said there are many others on the internet that offer the same service and the can be imprinted on practically anything.. DH loves the blanket and looking at the pictures

@M1

I wonder if the pictures are acting more as a reminder/trigger that she isn't with you. Your picture might be her version of the car parked in the garage of a person told they no longer are allowed to drive.

Or maybe she has some visual processing issues and is unable to identify the pictures as either pictures or specifically of the pair of you in happier times.

Sometimes dad reacted to portraits and pictures of people (photography or art) as if they were actual people who didn't belong in the room. At best he was confused by them. In the episode that led to his ED visit, he systematically removed all of the portraits on a gallery wall in his living room as well as the pictures of family elsewhere in the house. He left the ships, landscapes and still lives. He once pointed to an almost life size photograph of my late sister (his favorite person ever) and swore it was an intruder coming in to mess up his bathroom because he couldn't ever accept responsibility for his own foibles.

Dad found any new-to-him technology disconcerting. He got agitated when I tried to assist him to FaceTime my niece. We bought him a digital frame in the middle stages of the disease, and it was kind of a bust. He didn't really notice it and when prompted it didn't really engage him except to complain about the pictures we uploaded. He once complained that I hadn't included any pictures of my younger niece. I found a decent picture of her and sent it over. The next time I visited I pointed it out and he smiled "There's niece." The picture changed to one I uploaded of dad's urologist as a joke for mom who thought was one handsome devil. Dad looked at it and said "and there's my grandson". The doctor is Japanese-American and my kid looks like Ed Sheeran. YMMV.

I hope you can find a strategy that allows her to feel less upset in this situation.

HB

I think all depends on what is best for your partner....photos may not be helpful to her and the passage of time may mean nothing.

I have no ideas but my mom also had Alzheimers and when we visited she would say it had been months since she seen us even though had only been a few days and she would always say that she thought we would forget her when we left. It was sad but the staff said that after we had left she was OK and not upset. I think she had quickly forgot that we had been there and so she didn't remember the sad departure.

My mother took everything apart. I spent so much time decorating her room and every last bit came down over the months. By the end her room was rather sad looking to me but it's what worked for her. She just couldn't stop messing with anything. What are the staff saying about your partner when you aren't there? We only get a snapshot of an hour or two when we visit and sometimes something we are focused on is not a problem the other 22 hours a day. The normal passage of time is often nonexistent in the mind of a PWD, does she know whether a day or a week has passed between visits? I got to the point of not telling my mother I was leaving, as did my dad, because the goodbyes were too hard on her. I excused myself to get a drink or make a call and left and alerted the staff on my way out. Often within a few minutes she had forgotten I had ever been there, but if she did recall the staff would make excuses. "She had to step out for a few minutes but she'll be back later" and redirect. Your case may be a bit different, your partner sounds still quite verbal so perhaps she is processing more, but it could be that trying to get her to understand any time frame for your return is counterproductive. I know it's hard to see their emotions and feel helpless to fix it but unfortunately that's just the way this horrid journey goes sometimes. As for the comment to the night nurse - meh. Sounds rather normal for dementia; PWD say weird stuff all day long. Hopefully she was a bit out of sorts from the visitor and that's the end of it. Though it can be upsetting and out of character, residents getting mixed up about boundaries, who their romantic partner is, and where to find affection is quite common in a MC facility. Many start to think they are married to another resident or things like that.

Ugh, @M1 this is so very difficult, and I'm so sorry.

I've been in a similar place twice now with Peggy. The first time was when we first placed her. She was convinced (and fearful) that my brother and I just wanted to throw her away. Those were her words. I felt horrible because of course that was the last thing I was trying to do. The only thing that helped was for me to be there every day for a lengthy period of time. After awhile she either forgot about her fear, or she acclimatized to memory care, or some combo of both.

There was also a short phase where any of us leaving at the end of a visit caused her to worry that we wouldn't come back. Maybe this is where your partner is. If so, maybe this phase will be short for her as well. Crossing my fingers for you.

I love the blanket idea from @frankay .

Dear M1, I'm sorry it is still so hard when you leave. My DH is asking to go home practically every time I visit. A couple of days ago, his sister went to see him and he asked her to take him home. When she said she couldn't, he said, "I never thought YOU would let me down." She had to leave because she was crying so much. Your partner worrying that you are never coming back is truly heartbreaking to hear. I'm so sorry. Would it help if you left something with her and asked her to keep it for you until you returned? It could be a watch or scarf or some small thing that would be meaningful to her. Maybe that would give her hope. I also like the idea of a pillow or blanket. Praying for you and for her.

Brenda

I’m so sorry, M. You are trying so hard to let her know she is loved and to ease her fears. Sending hugs.

Brenda

@M1

YMMV and I may be projecting, but my dad was verbal to the point of conversation until he died so people often made the assumption that certain cognitive skills were still reliable for him-- like facial recognition and orientation to time-- that were long-gone. Dad could recognize pictures of most of his family from the 1940s until about 1985. He could recognize mom, his brother, my niece and me in those and IRL. He was iffy on my son at times (OK IRL but not in pictures at any age) and never sorted out who my husband of 35+ years was.

Dad also had a strong personality and it was remarkable to me how long that remained intact in the context of his worsening cognition. He was able to attempt to manipulate me into bringing him a car hours before he died from complications of aspiration pneumonia.

I sincerely hope you get the result you are wanting with her birthday gifts. You deserve it given the thought you put in as a caring partner.

HB

@M1 it is so sad but what I’m seeing with some of the most genuinely loving couples in my moms facility is that it is all very in the moment. As you mention, the recognition is gone. But I can’t help but to think the blankets, pillows, and photos must help, even on an unconscious level. That the partner knows.

Your partner knows you are there, doing all of this, on some level.

I bought this one on Amazon: MASSII 11.5 Inch Large Digital Clock with Auto DST and Sun Moon Icons, Custom Reminders and Calendar Clock, Day Date Clock for Seniors Dementia Alzheimers' Clock with Remote Control.

I like this one because the display is large enough DH can read it from across the room. It comes with a remote control which I hid after programming the clock.