Trekking along the dementia trail with mum

[Up the Creek]

(Trekking – a slow and arduous journey)

I joined TP about a month ago and have been hesitant about starting my own thread.

The A4 pad on which I have been recording the non-normal things happening with my mum since December, initially intended for my mum’s GP but which now has become a regular log of my mum’s decline, is nearly full. Nine months later many of the original non-normal things are now normal.

I read everyone’s posts here daily. Each one gives me a little more insight into what may lay ahead, they help me understand and accept that some of the things we are experiencing are not unusual and often offer a solution that might act as a workaround.

I hope that by adding my contribution others here and those who will be here might also find something useful from my postings

Television friends

Mum (88) has mixed dementia. This has so far manifested itself mainly with ‘imaginary’ friends though I don’t think this term is the appropriate description – they aren’t imaginary characters like Drop Dead Fred, these are real people who she tries to interact with.

If you look out of your window and see a neighbour, what do you do? Wave, smile and say hello? You know they are a few feet away and you are looking through a pane of glass. When you look at the television you know it is a piece of equipment that receives TV programs or with the addition of a DVD player you can watch DVDs. You might not know exactly how pictures of the news reader in front of a camera crew, possibly recorded earlier that day gets to your screen but you know it has happened. The DVD you are watching is from a boxset filmed back in the 1980’s, you know it is a recording and not something happening live.

Mum’s dementia has taken away all that knowledge, intuition, insight, and it’s as if the TV is just a window. She enthusiastically waves at the people on TV, smiles back at them as they smile into the camera their end and says hello or goodbye at the start or end of the program/DVD. Occasionally she will ask me to switch the TV off or find something else to watch so she knows it isn’t a window. For the time being I’m still a bit too reserved to join in with the waving!

We have stopped watching most of the programs on TV. She doesn’t like the way some people speak to her or look at her. She can’t abide people shouting or arguing with each other. Poirot once saved her from being arrested by the police for a murder she swears she didn’t commit! She will sit and have her lunch in another room when the news is on so the people can talk to me on my own. Sometimes she will go to the bathroom and asks me if anyone will mind. I tell her that no one will notice, they are busy doing something else.

We have some DVDs almost on continuous loop (mainly comedy box sets) and she refers to the actors as friends she has known for ages. In the past she made her own Christmas cards. She asked me the other day if I could find a cardmaking kit so that she can make some this year to send to one of the box set group of friends. I am all for her keeping busy so am readily going along with this.

Book and magazine friends

Not so clear to explain the origin of are mum’s book and magazine friends. I think the book friends started to manifest early 2019 before I spotted the change in her TV viewing reactions. She read a couple of biographies and when she finished reading, the book would be propped up beside her on the sofa with the picture of the person facing into the room. I became aware that when I left the room, she would start talking to the book but would stop when I returned. Was I imagining it?

It was becoming totally caught up and absorbed in her friends that caused me to seek a dementia assessment at the end of December. She became totally fixated on Strictly Come Dancing celebs. It started innocently enough in the first few weeks of the show but escalated to her becoming almost oblivious to anything going on around her, spending hours just starring, grinning and whispering sweet nothings to pictures she had lined up on the sofa next to her. It went from something almost endearing to something very disturbing and unhealthy at its peak. I wrote all the details in a letter and posted it through the doctors’ surgery door.

Talking to the people on covers of magazines, asking them their names, how were they today? explaining what was happening on TV, what I was up, what we were having for dinner, has become increasingly common. Most of these magazine covers have happy, smiling people on them. From the end of February there has been no more Friday club to attend and I suspect some of these paper friends are replacing the ones she no longer sees.

Pre-diagnosis and pre- me finding TP all of this irritated me intensely and I would huff and puff and grumble. Several times I thought about fetching my Guns n Roses biography to sit beside me to see what she thought of having a hard rock band performing in our sitting room!

I still get irritated hearing her whispering to her book friends and am now contemplating a mindfulness meditation course to see if I can learn to accept or tune-out. Maybe any omming as I meditate will act as a distraction.

I am learning to intervene at a point before mum gets too absorbed, but recently she seems to have an awareness of when she’s had enough of her visitors. In August just as I was trying to think of a way to remove the current book she was reading and getting too involved with she came to me in the Kitchen and said she thought it was time for X to go home. I asked if he had overstayed his welcome and she said yes. I hid the book, called out goodbye then went back to the kitchen and said he had gone. She was very relieved and a couple of times in the days that followed she said it was time he went back to his own family and hoped he got home safely

I have Peoples Friend on subscription for her, and she reads it from cover to cover during the week. These are a mix of short stories, articles, puzzles so there is no one story to spend hours reading and become engrossed in (nor are there happy smiling people on the covers!). One or two articles have sparked an interest in something else, and I have managed to track down a book for her to read on the subject.

Delusions

Mum has had some delusions but most of her dementia manifestations are in the form of TV, books and magazine friends

Between December 2019 and June 2020, she had several delusional episodes involving the children who live next door running around in our garden or playing in our hall at night (there are no children next door) There has been a woman in a flowery skirt dancing at the end of the garden (I think she was our peonies swaying in the breeze)

It was hard explaining that they couldn’t be there, we were all in lockdown because of the coronavirus dah-de-dah-de-dah … She didn’t answer me back nor insist they were still there; she was probably thinking that I needed my eyes testing! I now know you can’t rationalize these things and I should have gone along with it or tried a distraction. I’m more comfortable pretending I haven’t heard her or ‘sorry mum, I was too busy to notice’, than going along with it.

Fortunately once the Memory Clinic phoned us with the results of her tests in June she was prescribed Memantine and she hasn’t seen the children or the woman again, though interestingly, last week when we were outside with a cup of tea she said she wondered what had happened to the lady that used to come into the garden so her memory is still pretty good, it’s how her brain is able to interpret what she is seeing.

Sorry for the long post

 

[Canadian Joanne]

I'm glad you're starting your own thread. There are many members who have done so and it is very eye-opening to go back a year and see what was happening then. Of course, this is what you have done with your notepad, and as you saw, the non-normal becomes normal. Keep posting - at any length you like.

 

[Up the Creek]

It has been an interesting week

About a month ago I bought some DVDs I thought mum would like to watch. One of them came with a free book (A Street Cat Named Bob). She enjoyed the film but really took to the book and we ended up with Bob staying with us for a couple of weeks. I did caution mum from the start that our cat wasn’t keen on having another cat in the house and that Bob might have to go home at some point.

Just as I was thinking it was time for Bob to leave (I’m learning to spot when her attention to her friends starts to become more of an obsession rather than company) when mum came to me and said Bob wasn’t very well, she thought he was missing his owner and that he needed to go home. She had the phone beside her as if talking to someone so I picked the phone up (there wasn’t anyone on the other end) listened for a while and then said, OK, I will make sure he catches the next train from here to London. To complete the illusion, I put the cat basket in my car. Before returning home, I took a pic of the cat on the cover of the book (I had removed the book when she wasn’t looking). I told her there was a lovely woman waiting for the train, that she knew about Bob and would make sure he was picked up in London. As before she was relieved that her visitor had left to go back to where he belonged. I showed her the pic on my phone the next day to say Bob had got home safely and we had been sent this lovely pic of him. She thought he was looking a lot happier already!

For four days she hasn’t had a companion sitting with her on the sofa to talk to and to be honest I think she is looking a bit lost and needs these visitors - however irritating I find them. A catalogue arrived in the post yesterday with a smiley woman on the cover. I have been throwing them straight into the recycling bin but gave in and let her have it. And yes, it’s now propped up on the settee! I hope my mindfulness books and CDs arrive quickly!

The Christmas card kit has arrived, but mum has looked unsure where to start. I have left her to think about it for a couple of days, not wanting to interfere, but yesterday found all last year’s cards so that she can cut pictures off the front to stick onto the blank cards as a starting point. She can then add the embellishments. She sat yesterday afternoon reading the cards, but she can’t remember who half the people are (most of these are the people from her Friday club who she hasn’t seen since February)

This morning she has started sorting out the cards she is going to use and has asked me the names of her TV friends. I asked her if she wanted their show name or their real name. That puzzled her but I said no problem I would see if I could find both for her. I then said once she had finished the cards we would have to send them to the BBC to send on to them as we didn’t know their addresses but her solution is that she will hand them to them nearer Christmas when they are here. I have this sad picture in my mind of her standing in front of the TV holding out cards that her friends will be ignoring. I just hope it’s not at a point in the episode when everyone is laughing.

 

[Canadian Joanne]

Oh dear, that's such a sad image of her holding cards out to the TV. I hope you can get her to let you take the cards 'for delivery' or whatever works best for her.

I think your giving her a companion on the sofa is a good idea, if it keeps her contented and busy. You've done remarkably well with handling all these potentially upsetting situations.

 

[Up the Creek]

@Canadian Joanne I am all for the path of least resistance so anything that will keep her contented and busy is a plus. Having discovered that love lies are allowable my imagination at creating them has been unleashed I suffered awful post natal depression through being totally unprepared for motherhood and I am determined not to be so unprepared finding myself as my mother’s carer

 

[lollyc]

Wow, I'm impressed! I'm still struggling to be patient with the whole talking to the TV thing - mainly because I'm usually trying to watch the programme, so it's quite distracting. I liked the bit about Poirot. My Mum always wants me to get the nice sergeant on The Bill to stop her being arrested for stealing antiques (Flog It, or Antiques Road Trip fuels that, I think.) Her TV friendship isn't constant, it waxes and wanes for no apparent reason. We don't have book friends that she talks to, but most books she reads are written about her life. She's just come back from Australia with Bill Bryson, and is now heading off on a round Britain trip. Once Bill gets here....
Sometimes the books merge with TV and merge with real life , and I struggle to understand quite what she thinks is happening. It's sad, frustrating, irritating...

 

[Up the Creek]

Well, some things resolve themselves and this week mum came up with the solution to getting her cards to her TV friends herself. The woman who ran her Friday club before lockdown has a lot of contacts and she will know how to get the cards to her friends. Thanks mum! I just need to ‘drop the cards off at V’s‘ ? No having to deflect her from trying to hand them through the TV screen.

She has been busy all week making card to the extent she hasn’t paid any attention to book or magazine friends. She has however taken the cards she had made up to her bedroom at night so there might be an element of not wanting them to be tampered with when she isn’t there (much like when she puts her colouring book and pencils away when she isn’t colouring) .

The sad part is that the cards are nothing like the ones she used to make but that is to be expected. There’s no particular picture created, more random placing of stickers and embellishments similar to what a child would do. I think she reflects on what she has created and knows they don’t look quire right because she has started again several times. But 10/10 for her enthusiasm, persistence and determination.

My mum didn’t find out she had been adopted until she was in her 30s and subsequently never wanted to know who her birth parents were until last year when my daughter did a dna test and found some third cousins that didn’t come from my father‘s side of our tree. Mum started the ball rolling to access her adoption records last September but there was a six-month waiting list before a social worker could be assigned to her search. Yes, you‘ve got it, she reached the top of the waiting list in March coinciding with lockdown.

I now have a dilemma. I was thinking of contacting our adoption service to see if they can discuss what they have found over the phone or a video link, given that there are further delays in in-person contact. When we started the adoption search mum’s dementia hadn’t been diagnosed and the tell-take signs of something not being right were the ones you look back on and can see in hindsight.

I’m wonderIng what my mum’s reaction would be, one year on, to finding out who her birth parents were. Does she remember that last year she wanted to know? I think her timing is still in the present but if she thinks she is in her 30s will it be a shock to find out that she has been adopted?

The sole remaining family (just three of us, excluding mum) and very keen to know but I’m thinking it’s no longer in her best interests. She certainly hasn’t bought the subject up recently.

 

[Up the Creek]

I was a bit apprehensive last Saturday night about the return of Strictly and whether we watched it or not (it was mum’s obsession with the show last year that led to her dementia diagnosis) but I decided to go ahead as I didn’t want to out-rightly deny her something she really enjoys watching. I reasoned that this year as we have no TV guide there wouldn’t be 12 new friends sitting next to her on the sofa and I could restrict her exposure to just the two weekend shows and not the additional five weekday early evening catch-ups. Oh look, due to Covid-19 the weekly programs aren’t on this year mum.

The program started, she enthusiastically waved, smiled and greeted the show hosts and judges but after about fifteen minutes she lost interest once she realized that none of her friends from last year would be appearing and that she didn’t recognize any of this year’s celebrities. When she picked up her magazine to read, I switched the program off. ‘It’s not the same without my friends, I’m not interested in watching this lot cavort around full of their own self-importance’ I will now find us something else to watch relieved that I won’t have a repeat of last year to contend with.

Mum has continued to make her Christmas cards. At times she overworks them (I have seen this before when she has been colouring) and the next day she accuses someone of having messed her cards up and she has started again. This week she stamped her foot in exasperation (first time I have seen this reaction) but I made no comment. She also mentioned that we would hand the cards to her friends when we go and see them. I have an inkling she thinks we will be going to visit them at the holiday camp where they work. Nearer the time I will be able to say that their part of the country is in lockdown so we can’t visit them and then think of a plan B.

In the past mum would ask how old someone was now, what do they look like now, what other films or shows have they been in, what else have they written etc and I would look on Wikipedia and it would be interesting, we would be amazed, or shocked and often have a good laugh. Out of interest I checked Wikipedia to see what has happened to her current friends, but I am unable to share the results with her. The ones who are still alive are the same age as she is and look nothing like they did when the series was filmed in the 1980s.

My father died from Alzheimer’s four years ago. Mum doesn’t mention him very often though one evening this week she wondered how he was and that she missed him.

Three years ago, I saw a medium (my husband died suddenly and unexpectedly five years ago) and three from the spirit world visited me, my husband, Dad and nan. (I’m a little sceptical about this world but in grief you look for answers wherever you think you might find them) My dad’s message was to tell mum he loved her and will be waiting for her. I never revealed to her that I had visited the medium but thought now was the time to pass on dad’s message. She brightened up and asked me if I thought that was true, I replied I was sure of it. I have since had a sneak look at what she has written inside two of the cards she is making and she mentions how much she and my dad love their program and how much she is missing him. I'm thinking of getting some photos printed onto some fabric and making a quilt or pillow for her, it might be of some comfort to her.

The other night as we went to bed she said that when she got up to use the toilet the previous night there had been a big heap of sheets on the floor and that she wasn’t sure how to get round them but that the others must have been in and removed them because they weren’t there by the time she returned to her room (It’s just me and her in the bungalow and I was asleep). A couple of times before she mentioned having to get round boxes either blocking her exit from her bedroom or in the hallway and being unable to find her way back to her bedroom but I thought I had resolved the problem by having nightlights in the hall and cloakroom so that she isn’t walking around in the dark.

I don’t know who the others are, and I am not going to ask; I prefer to remain in denial !

 

[Up the Creek]

I have been keeping this log on a weekly basis for a month now and reading back not much has changed in terms of mum’s dementia. The main symptoms are still displaying as TV and book friends.

This last week Mum has again spent the majority of time fiddling around with three Christmas cards she is making for TV friends. She declares them finished and the next moment she is back reworking them. It’s keeping her occupied but I’m getting concerned that she is spending too much time and thereby getting too involved with the characters. I had a peep at the latest letter she had re-written to go with one of the cards and it’s now become a love letter. I wish I hadn’t snooped. If this obsession progresses like it did at Christmas, she will next be expecting me to take her to wherever she thinks they are as they will be waiting for her. I did have a look online to see where it was filmed and if as a last resort we could have a trip out to see the location but it's now a housing estate. Thank goodness for another lockdown, I have a valid reason for not taking her anywhere!

I hadn’t played any of that particular show’s DVDs for three days in an attempt to break the compulsion but yesterday she said she had to make contact with xx and xx on the machine or they will wonder where she is. She was clearly expecting me to put on a DVD. I chose the episodes very carefully avoiding any where one of her friends falls in love, to sidestep her thinking that what was being said was being directed at her

Isn’t it strange how on the one hand she knows she needs the DVD player to see her friends but on the other hand she believes they are real once they appear on the screen? Ahh but maybe she is remembering the times a few years ago when I used Skype on my laptop to chat with my sibling who lives overseas!

Yesterday was the first time in a while where she looked at me and asked me where I was. She added that I usually sit in the chair that I was sitting in. I would love to know who she thinks I am when I am not me. Am I a nice me or a not-so-nice me, which me does she prefer ? !

Has anyone looked at whether wearing different clothes adds to this non-recognition? This woman sitting here wearing black top and trousers must be my daughter as that’s what she usually wears. Oh! she isn’t here at the moment I have a woman in a pink jumper instead.

 

[Canadian Joanne]

A month is not really a long time. I found looking back over a year is when I noticed the differences.

That's an interesting point about non-recognition and different clothing. I've not heard anything about it but it does make sense, particularly if a person tends to wear the same styles and colours all the time.

 

[Hayley JS]

How my mum sees the world often baffles me. A few months ago I used a black paste face mask (cleansing routine not covid!) and thought my appearance might amuse mum so I popped into her room and asked what she thought to my new makeup. She looked at my face and said 'very nice', no irony or jest, she simply did not see my all black face. Also, when I try to get her to wear a face mask she always refuses on the grounds that I'm not wearing one and no one else is either when in fact I am and so is everyone else....

 

[Canadian Joanne]

@Hayley JS yes, it is absolutely mind-boggling how a person with dementia can be looking right at something and not see it. My favourite moment when my mother was standing naked in the bathroom in front of a full length mirror and declared to me that she had never been fat. This with at least 4 stone extra on a 5'3" frame, resulting in her looking like a little Buddha.

 

[Hayley JS]

Thanks for that @Canadian Joanne gave me a snorty choke-laugh! Bless her

 

[Bikerbeth]

I have just seen your posts and I admire how you have dealt with it. My Mum never had anything like that (yet!) I hope you manage to find a solution to the Christmas Card delivery

 

[Sarasa]

Hi @upthecreek, you have my sympathy and I think you are handling your mother's obsession amazingly.. My mother developed a 'thing' about a tour rep she met while on holiday in 2014. At the time her eyesight was declining, she could seem a bit vague and there was something not quite right about her, but I wouldn't have identified it as dementia, more a magnification of some of her more annoying character traits. When she returned from the holiday she told me she'd had a good time and the tour rep was very kind and nice. Within months this had developed into an amazing love affair and she could talk of little else than Mario. Mum was in her mid-eighties at the time, but by 2017 she was wondering what would have happened if she'd stayed in Italy and had his babies. As she lost more and more of the last twenty years of her life from 2018 onwards the obsession subsided and by last year she'd given up mentioning him and was obsessed by going home to see her parents instead.
I hope you manage to keep your mother's interest in the TV characters under control. My brother, not realising how real it all was to mum, said he'd invite Mario to her 90th birthday party. I was the one who had to tell her he was joking and it wasn't going to happen, which led to lots of upset.

 

[Up the Creek]

Thanks for all your comments. I wasn't ignoring them, I have only just found them! I have now updated my preferences to receive emails

Not much has changed since I last wrote…it’s been Groundhog Day with mum still making Christmas Cards for her TV friends, but she is down to just two. Somewhere along the line one of them has been removed from her Christmas card list!

Each morning after breakfast out comes the cards, she removes many of the stickers and embellishments already attached and then spends much of the day re-making them. She declares them finished and takes them up to bed with her so no one can meddle with them. Next morning...repeat

She is content doing this, so I leave her to get on with it. I must admit that the cards she is now making are a lot more cohesive and less stickers placed randomly. I have read people giving their LO fiddle blankets and I wonder if this repetitive making her cards is something similar. In four weeks I will have to get her started on Easter cards

Last week she started leaving her bedroom door ajar at night, rather than wide open. I wondered if the night light in the hall might have been disturbing her but last night as we said goodnight and she closed her door she mentioned she doesn’t leave it wide open in case the others come to clean up or drop things off. I didn't ask who the others were but it's a good thing I leave my bedroom door closed as I wouldn’t want them to disturb me either! The trouble with going along with a PWD when you are with them 4/7 is that you start being drawn into their reality.

There have been two or three mornings recently where she hasn’t been up and dressed by 7.30 and I have left her to sleep in, not knowing if she has had a bad night’s sleep or not. It might just be the time of year where it doesn’t get light until 7ish so there is no sunlight coming into the room to start waking her up.

I am part way through a free Foundations in Dementia course that I came across online. I’m on week 3 which covers the legal and ethical aspects (mental capacity, human rights) and finding it very interesting and insightful. I will post more details abut the course in the Helpful websites section in case anyone else is interested.

 

[Milvus]

Your Mum sounds like a very sociable person and seems to be enjoying her imaginary friends and her Christmas card making. I had to laugh at the Poirot delusion! My mother went through a period of vivid hallucinating (side effect of medication) and one day she got annoyed with the imaginary man who was sitting beside her in her flat and wouldn't go away. In the end she told him if he didn't leave she would hit him with her walking stick. He never bothered her again! Sometimes you just have to smile.

 

[Up the Creek]

Hi @Milvus, wow, that’s impressive that your mum managed to stop her own imaginary friend like that. So far my mum has come to me and asked me to send her ones away. I have physically removed the book causing the imaginary friend so it’s out of sight and out of mind.

It’s fascinating how the brain and mind works . When I was younger I used to have lots of dreams where I was being chased and having to run on and on and on. One term at uni I took up rifle shooting and the dreams stopped...I had the being chased dream but found a rifle beside a bush I was running past. Picked it up and aimed it ...never had that sort of dream again!

 

[Up the Creek]

It’s a month since I last updated my thread. Not a lot has changed in those four weeks. Mum continued to make her TV friends Christmas cards but in the two weeks before Christmas the cards became more like little booklets. She stuck two cards back to back so instead of four pages to stick pictures on she now had six pages. Once she had run out of stickers she started cutting out Christmassy pictures from her magazines along with other things she found of interest.

Fortunately she had listened to Boris’ message about Christmas visiting being reduced to just one day and that we were going into tier 4 from the 26th and had a clear understanding that she wouldn’t be seeing her friends to give them their cards. She still had them next to her on Christmas Day but there were enough other programs on TV that I managed to avoid putting the DVD with her friends in it so there couldn’t be an attempt to hand the cards to them. I think she has put them away for next year now as I haven‘t them since.

I had a lightbulb moment after seeing how much she enjoyed cutting pictures, recipes and other things of interest out of her magazines and have now ordered a couple of scrapbooks for her. When I asked her if she would like a scrapbook to put things in she talked for ages about how her father encouraged her to compile scrapbooks and she can’t wait for them to arrive. She has already cut out lots of things ready to stick in them. So pleased I have found something to keep her fingers busy and her mind active.

She seems to be sleeping later but I have put that down to it still being dark at 7am when she would normally wake up. it gives me an extra hour of just me-time in the morning so I am not complaining.

At least once a week in the last four weeks she has got up to use the bathroom and her skirt has been wet and I have had to put all the damp sofa protective covers in the wash. Mum finds it distressing that she has been unaware of needing the toilet (fortunately she is in pull-ups so it’s more or less contained) but I have just shrugged it off, made light of it and by the time she has changed the new covers are back on the sofa.

Another small change is that I am having to remind her to take her medication. I hand her her pills in a small glass and she usually takes them straight away but the past few days I have had to remind her at least once if not twice to take them up to an hour later. I don’t like nagging so don‘t hover until she has taken them but use the excuse of another cuppa and an ‘oh, you haven’t taken your pills yet’ as a prod.

This Christmas has turned out so much better than last year. This time last year I had to make an appointment to take mum to see her doctor which then lead to the memory clinic and her dementia diagnosis. I am better at intervening and stopping potential attachments become obsessive, I have learned the signs. When she mentions her friends I go with the flow. It’s a bit harder when she distinguishes some of the people on TV as being my friends, I have to say that they aren’t really my friends, that I don’t know them very well and that I’m just being nosey, seeing what they are up to!

One last comment for now. A couple of times in the last week mum has said how nice it is that there are just the two of us here. I think now is the time to introduce a carer or two by way of them being here to chat with her, craft with her, take her out. I’m not that a devoted daughter to be willing to take everything on single-handed and I’m guessing the carer level of help isn’t too far ahead.

 

[lemonbalm]

Your mum sounds pretty happy and contented @Up the Creek, and you sound to be doing an excellent job of looking after her. I think you are wise to think about introducing some extra care soon so that you have the option of increasing help when it's needed.