Forgetting visitors

MarLee92

Yesterday my MIL had her 1st checkup with her neurologist since her diagnosis in August.  I felt it was possibly an eye opener for my SIL's who have seemed to not understand the seriousness.  I zoomed in to the appointment, and was able to ask questions. The neurologist also did excellent in asking questions and discussing concerns that I had emailed to her (things I didn't think the SIL would mention). The one issue that came up was that my MIL said she felt lonely and that nobody visited. We all pointed out to her that the one SIL stopped in every day for a few minutes on her lunch and that someone was there almost every day. My MIL said that she went 4 days without any visitors and she cried the whole time.  This wasn't true and she had in fact, had a really busy couple of days.  My question is how do we help her with this 'loneliness' when we know that she is having visitors? The neurologist actually said to refer to this group for suggestions. I mentioned to my husband about having a white board, where people could sign when they were there and what they did. My thought that she might feel better if she looked at this board (even if she didn't remember the visits). He was as usual, not feeling it was needed.  I also suggested brighter pillows with possibly words like love, joy, home, on them and colored pictures frames to brighten her home (she keeps it very dark).  What have you all done with confronted with this? I also have to say that the doctor said she would refer my MIL to the Secretary of State for a driver's exam, if she felt she shouldn't drive.  I was overjoyed that she expressed this concern in front of my SIL's.

SusanB-dil

Hi Lee1992 -

Perhaps photos would help?  Older photos of family and friends around, especially with her in them. New photos of various family and friends being with her, maybe?

You could try the white-board, I don't know why the doc would just shoot that idea right down... or even some type of notebook. Have folks put in the date and maybe even a short message. This may even help later down the road, when you and others reference it as memories.

In the meantime, hope that maybe more family will realize what is happening and seeing what you see.

ninalu

Hi Lee, 
I love your idea of a greeting board, bright pillows, and picture frames with positive, reinforcing messages to help address loneliness.  

My mom, now late-stage, has struggled with feelings of loneliness throughout her journey with Alzheimer's, even during times when she has been surrounded by friends & family. In my mom's case, it seemed to me that the earlier/mid stages were especially painful for her. She used to speak of how she knew something was wrong, she felt different, she felt uncertain of what had happened and what was going to happen - the disease process itself made her feel isolated despite having company and companionship.  

We found that little things helped mom a lot; we sent frequent greeting cards to her in the mail, we put little love notes all over her house that she'd find randomly in cupboards, drawers. We did frequent drop-ins and visits, phone calls, etc. We put photographs of loved ones all around her, including pictures of animals (she's a big animal-lover.) The pictures, notes, positive messages helped to "fill in" the quiet / empty space between caregivers, or during gaps in conversation, or whenever her attention was settling onto a new thing. They didn't take away the loneliness but they seemed to helped a lot. 

Re: your idea of a greeting board, you could also have a notebook where family and friends can write messages over time (days, weeks, months.) We did this for my grandfather and the whole family enjoyed it. Caregivers would write updates there and family would write notes / thoughts / reflections. You could keep it to family messages if she'd relish the opportunity to reflect on days or weeks prior; it could be a lovely history of visits and good feelings that she can hold in her lap and refer back to. 

M1

This is timely, I’ve been thinking about this a lot today. I know my partner is lonely, but I don’t think there’s any solving it because even if we have a visitor she forgets it within minutes.  There’s no day care anywhere near us, and I’m not sure that would work anyway- she has back issues that would make participation difficult. She likes to go sit in our mechanic neighbor’s workshop, but he’s not vaccinated, and she keeps him from getting his work done.  I may have to just see if I can hire someone to keep her company, she doesn’t really need ADL help yet, and with covid rates going backup it remains very problematic.

MarLee92

M1 - I feel the same way about my MIL forgetting visitors.  I really like the ideas suggested above about a journal/diary type book.  My MIL for instance, has already forgot her daughters took her shoe shopping yesterday and out to dinner.  I think a journal that they could put their name, the day of the week and what they did would be something my MIL could go back to and not remember it entirely, but maybe at least trigger something.  As I have stated all along, my husband's sibs aren't to receptive to new ideas, but I'm going to try and get them to do it.  For you LO, maybe the neighbor could make some notes to her in there too.  My MIL lost interest in holiday events a few years ago - all the noise was just to much for her. Mentioning things like Thanksgiving and Christmas just make her anxious.  Do you see this in your LO too?  It's just sad to me that my MIL won't attend a family event she used to enjoy so much.

M1

Oh yes, events of any sort make her anxious, and the last two times we’ve had visitors she didn’t like it because she couldn’t follow the conversation. So like I say, I don’t see a solution.

Stuck in the middle

They say you should not have one dog.  You should have two, because dogs are lonely when alone and have no sense of time.  When you go out, it seems like forever to them.

I suspect the same rule applies to PWDs who have limited short term memory.  If you visit a few minutes a day, they are still alone for several hours and it can easily seem like no one was there for several days.  I know my grandfather complained of loneliness although his daughters had a visiting schedule that had the three of them there weekly on different days, even though he was mentally unimpaired and had other visitors.  

Being alone is a physical condition.  Loneliness is a feeling, it is as real as any other feeling, and it is as deadly as smoking 3/4 packs per day.  If your LO thinks she is lonely, she is lonely, whether you or I would be lonely in her place or not.

Some say they would rather die than go to memory care.  Others say they think placement would kill their LO.  I question that. I suspect some people would be happier and healthier in memory care with other people.

I don't live alone and I don't live in memory care, so this is just thinking.  I am seriously considering a couple of places that have assisted living (for me) and memory care (for her) in one facility.  Not for this year, but someday.

Shevie

My husband has started forgetting who visited as well. We shared a visit and meal with his brother and SIL, and MH said that our SIL wasn’t there at the visit. So heartbreaking to see the blank look in their eyes.

M1

Those are wise observations Stuck. I think the dog analogy is very apt. My partner is very attached to our animals, and they seem to assuage her loneliness better than human company does.

Mom's Baby

I don't know what the original poster's mother's living situation is (home? assisted living?) but I have to add here that using photos or a white board or journal isn't always effective depending on the person. 

We tried those things for my mom when she was in Stage 5 and living in an independent living facility with a lot of support from me (I was there every day.) She would tell me no one had visited when it was on a white board on her refrigerator, or when one of my sisters would leave a note on the table saying she'd visited that day. 

She'd complain of not knowing what day it was when we had hung no fewer than three large calendars throughout her small apartment. It was like those things weren't even there. I'm not sure if this is what's referred to as "visual agnosia" when people can look at things and not recognize them. 

The thing to keep in mind is that tools like journals, white boards and calendars only work if the person thinks to look at them or understands what they are. 

Another warning about photos -- for some reason, my mom would take the photos out of the frames and put them somewhere. I'd see they were missing and ask her what happened to them and of course, she "hadn't done anything with them!" I'd find some in a drawer, but I think she even threw some away. I really don't know why, but if you do plan on using photos to help her, make sure they are not originals but copies. 

I know I've heard of this happening to others here on the message board over the years. In some instances, I think she may have already stopped recognizing some of the people in the photos (grandchildren, for example). In others, I think she had planned on "keeping the photos safe" and put them away. Or, she was just upset about her situation and didn't want to see them. 

jfkoc

I think we all struggle with improving our loved ones memory but really, how futile when memory is the problem.

I suggest instead that you validate your MIL's reality. You could explore her fellings...share how it would be lonely with no visitors and close with "we will make more frequent visits". 

I also suggest you get your Plan B in place. It sounds like her living alone is not going to last much longer. Time to look for in home care or placement is now not when there is an emergency. She just might thrive being around people and having activities.

Oh, please, no more driving.

MarLee92

My MIL still lives alone (although she shouldn't be).  I am exhausted trying to explain why she shouldn't be to my DH and his sibs.  I liked what you said about the journal and pictures being good, only if are LO knew why they were there or would look at them.  I can see that being a problem for my MIL.  I have thought about getting her personalized magnets.  I did this with my kids when they were in school.  I had a personalized magnet for each of them and put papers to go back to school, sports note, etc under their magnet.  Their responsibility to grab it.  With my MIL I'm thinking of the magnets for her kids to use - they could put on the side of the refrigerator she always sees and it would be a way to say that person was coming over..........something for her to look forward to.  If by chance they wrote a note about what they were going to do (dinner, ballgame, walk) she would know that.  This is where getting them to do it would be the challenge more then my MIL.  What does anyone think about that idea?

MarLee92

M1 - been wondering about what you said about holidays.  I'm just curious, as my MIL seems close to your partner's stage - what do you do at the Holidays? Do you stay home or attend parties?  We have gotten by so far by having one of us invite her over with just our immediate family.  She doesn't seem as confused.  But last time here for a dinner, she repeated questions over and over again - something she does when she's distressed.  I don't think she'll attend much longer.

Mom's Baby

Lee1992 wrote:

My MIL still lives alone (although she shouldn't be).  I am exhausted trying to explain why she shouldn't be to my DH and his sibs.  I liked what you said about the journal and pictures being good, only if are LO knew why they were there or would look at them.  I can see that being a problem for my MIL.  I have thought about getting her personalized magnets.  I did this with my kids when they were in school.  I had a personalized magnet for each of them and put papers to go back to school, sports note, etc under their magnet.  Their responsibility to grab it.  With my MIL I'm thinking of the magnets for her kids to use - they could put on the side of the refrigerator she always sees and it would be a way to say that person was coming over..........something for her to look forward to.  If by chance they wrote a note about what they were going to do (dinner, ballgame, walk) she would know that.  This is where getting them to do it would be the challenge more then my MIL.  What does anyone think about that idea?

Hi Lee, I think the magnets would be the same as the photos, journals, whiteboards -- as long as your MIL remembers to look at them, they might be helpful. If she looks past them or doesn't understand what they are, then they probably won't make much difference.  Our white board was a magnetic one that we put on the front of her fridge, and my mom still never seemed to read it or understood what its purpose was. 

As far as holiday gatherings, the last one I took my mom to was a bust. And it was at my oldest sister's house with just immediate family. Maybe 8 people total. And she was very unhappy the whole time. Kept telling me she was going to "walk home" which was of course not possible for her. I think she had a VERY difficult time keeping up with conversation and my family can be pretty loud and boisterous. I think she thought they were laughing at her when they laughed which of course was not the case. If you think your MIL may react that way, I'd recommend keeping your gatherings with her very, very small. 2-3 people, maybe 4 tops. 

M1

Lee I second what Mom's Baby said about keeping holiday gatherings very small.  If we do anything, it will be here at home--her going elsewhere doesn't work very well any more under any circumstances.  We may have a very small Thanksgiving dinner with her brother in law (his wife--my partner's sister--died in early December last year, so a first holiday without her will be hard).  Probably do nothing at all for Christmas.  My son usually comes home from Seattle, and I may go for a day visit with my grandkids, but it won't involve her--the young kids make her nervous.  So yes, it's pretty quiet.

harshedbuzz

I'm going to pile on as a third to Mom's Baby's post.

Dad's tolerance for celebrations tanked dramatically somewhere between stages 5 and 6. He'd enjoyed a birthday dinner out as a party of 6 that included his beloved brother in early July, by late August he was less into it and complained his brother wasn't included for his anniversary. He was so unpleasant, we never took him to a restaurant again. He was cranky the following Thanksgiving at a small gathering at his home and rude by Christmas when our small family of 7 gathered because my mom insisted. 

Weirdly, his MCF did a monthly themed party and he enjoyed when my mom attended those with him. The last picture I have of him smiling was taken at the Sweetheart Dance.

HB