(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
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