Day by day

[SeaSwallow]

I think that it would be useful for me to record occasional daily thoughts, not necessarily for other people to reply to them but more for me to think things through and as reminders of the progress of this horrible disease.
The last couple of days have been good, no confabulation, first time in ages. Such a relief as constantly listening to these stories is so wearing, and it is so hard to comfort hubby when he gets caught up in what he thinks is real.
It did worry me today when he asked where our daughter lives, hopefully this is just a blip as he had just woken up from a doze.

 

[LynneMcV]

It is hard @SeaSwallow - and there are so many changes to work through. Like you, I also found it helpful to keep notes on the forum about what was happening - it helped me keep track of the changes, made it easier to spot triggers which might otherwise have gone unnoticed in the general confusion - and of course, gave me access to much needed support and understanding. I am sure you will find that support in equal measure.

 

[Grannie G]

It`s a good idea @SeaSwallow

Many of us decided long running threads were the best way to record our lives with dementia and receive support at the same time.

Mine spanned eight years and helped to see me through.

 

[SeaSwallow]

Thank you @LynneMcV and @Grannie G. Another day and no confabulation. After so many months it seems so strange, it may not last but I try to take each day as it comes.
We were having a chat over dinner and hubby said, I know I have no right to ask this but when I am gone I would hate it if you were to remarry. Then he laughed and said that he would not know any way. It’s a conversation we have had before, I always say that I cannot imagine being married to anyone else.

 

[SeaSwallow]

Back to one of the regular confabulations today, managed to calm him down eventually. Now resting and does not want anything to eat. Sometimes I think that this refusal to eat is him thinking that he is punishing me for something he thinks I have done. He soon gets hungry though and asks why I have not made him anything. It’s going to be one of those days. Sigh!!

 

[SeaSwallow]

I am hoping that writing this back story it will help my and perhaps other members. My husband was diagnosed almost three years ago but looking back the signs were there for a few years before that, forgetting things, nightmares and some very subtle changes of personality. The diagnosis of Lewy Body Dementia was almost a relief. For about the first two years there was no real change, just the occasional nightmare and short term memory loss.
But then about a year ago the confabulations started, these can be so distressing for both of us. But then suddenly we will be back to having a normal conversation, or he will read a book or watch the news on his iPad.
My husband was always physically strong and he is gradually losing that strength, which really distresses him.
I have tried to encourage him to join a support group but he is reluctant to do so as he is a very private person. One of his friends has offered to visit but he just says no.
Watching these changes in my husband has been heartbreaking, And it is so hard for him, he keeps saying the he was the one who had promised my mum and dad that he would look after me and now he thinks he has let them and me down.
One good thing is that apart from the short term memory loss and the confabulation my husband can still enjoy things like reading and he is able to plan what he would like to do in the garden even if physically he finds it difficult.
There are still some good days but the bad days can be awful.

 

[Jaded'n'faded]

I wonder if you could get his friend to 'just turn up' rather than asking your husband if he wants a visit. Often the default answer for anything you suggest is 'no' so sometimes it's easier not to ask and just do it.

 

[SeaSwallow]

Thank you, I might try this sometime

 

[SeaSwallow]

The last couple of days have been difficult. My husband is adamant that the doctor at the MHU shouted and was very nasty to him during his last appointment. This is of course not true. This has been ongoing in and off for a while. As a result he is refusing to go to his next appointment. I have tried to reassure him that the doctor was not nasty but to no avail. I have also explained that, anyway, it is a new doctor that he will be seeing as the previous doctor has changed areas. Hopefully on the day of the appointment he will have forgotten this again.
Sometimes dementia is so hard to understand, he cannot remember the day of the week but gets these fixed ideas that he does not forget.

 

[Canadian Joanne]

Yes, these fixed ideas can carry on and on, while other things which seem easy or memorable to us are lost. Do you go in with him for his appointments? I'm not suggesting the doctor shouted at him but if you're there, perhaps it would help?

 

[SeaSwallow]

Yes I go with him, but even though I tell my husband that the doctor did not shout at him he does not believe me. Even told me one day that I was in league with the doctors. The joys of dementia.

 

[Bunpoots]

When my dad went on and on about something that hadn't happened @SeaSwallow I used to find that telling him I'd do something about it would help end the obsession most of the time. Usually that I'd "have a word" with whoever had upset him in his imagination...I never did of course.

 

[canary]

The last couple of days have been difficult. My husband is adamant that the doctor at the MHU shouted and was very nasty to him during his last appointment. This is of course not true. This has been ongoing in and off for a while. As a result he is refusing to go to his next appointment. I have tried to reassure him that the doctor was not nasty but to no avail. I have also explained that, anyway, it is a new doctor that he will be seeing as the previous doctor has changed areas. Hopefully on the day of the appointment he will have forgotten this again.
Sometimes dementia is so hard to understand, he cannot remember the day of the week but gets these fixed ideas that he does not forget.

My mum had something similar. She thought I was abusing her. It started soon after she said that she wanted to come and live with me. I invited her to come and stay with me so that I could see whether it would work and a week-end was long enough to show me that it couldnt ever work - she woke me up every half an hour during the night as she could hear "noises in the kitchen" (there was nothing), demanded that she was the centre of attention and resented anything that OH wanted (he was himself beginning to show symptoms then). Eventually OH had a massive seizure and she went into meltdown...... Her solution then was that I should give up my work, leave my OH and move into her home to look after her, which I told her (gently) would not be happening.

It was after this sta she started accussing me of being nasty to her and shouting at her, which soon became that I was stealing from her, pushing her and slapping her. With hind-sight (and more knowledge of dementia) I think that she could remember that I had done something which upset her (refusing to have her live with me, or me come to live with her), but she couldnt remember what, so she confabulated things that would fill that gap. I tried reasoning with her - was I likely to do these things to her, when I loved her?, but you dont need me to tell you how that worked out. She was adamant that it was true, because she "remembered" these false memories and to her they were very real.

When your husband went to the memory clinic last time was there something that upset him eg he didnt do very well on the memory tests? If so, then this is probably the source of the confabulations. I wouldnt say anything more to him about it and just take him to his next appointment - perhaps with the promise of tea and cake (which you can do after)

 

[SeaSwallow]

Thank you @Bunpoots, I have tried this in the past, some times it works and sometimes it doesn’t. Sometimes my husband sort of realises that these things are not real and that is nearly worse as he thinks he is going mad (his word). Trying to comfort him that it is part of the LBD doesn’t always work. Thankfully he had forgotten about it by this afternoon.
I went to the local chippy this evening just for a change, by the time I came back about 15 minutes later he had forgotten that I was going and was getting concerned. Just another step along the way.
I love my husband and hate what this disease is doing to him.

 

[SeaSwallow]

@canary, you could be right about the my husbands confabulation regarding the doctor at the clinic. It could be a combination of being told about the LBD and also that the doctor would not support his appeal when he was told that he could no longer drive. Thank you. I have such a lot to learn about this dementia journey. It is only recently that it is starting to hit home.

 

[SeaSwallow]

My husband was saying once again that he was not going to the memory clinic because the doctor was nasty to him. He then calmed down and said that he knew he was putting me through hell. That really hit home. He sort of knows that what he is saying is not right but at the same time he believes it.

 

[canary]

He sort of knows that what he is saying is not right but at the same time he believes it.

Im afraid that is typical dementia - they can believe two entirely opposing things at exactly the same time, because their logic has gone.

Mum had this delusion that the people who lived in the upstairs flat (she lived in a bungalow) were stealing all her hot water (she was switching off the boiler) and I remember her saying "I know they arent really there and it must be me, but something has got to be done to stop them using up all my hot water"

 

[SeaSwallow]

@canary And then after one of these episodes he can start to discuss, quite sensibly, the war in Ukraine which he is following on the news or a book he is reading, or what plants he wants for the garden. But that is just LBD, confusion followed by clarity.
I appreciate your insights @canary, they help to remind me that I am not the only one in the world dealing with this issue.
Our local health trust runs zoom courses especially for people caring for someone with dementia. I am considering joining the next one.

 

[canary]

And then after one of these episodes he can start to discuss, quite sensibly, the war in Ukraine which he is following on the news or a book he is reading, or what plants he wants for the garden.

Knowledge, logic and understanding of real life seems to me to all be different thought processes. My OH still has a vast amount of knowledge, but cannot "connect the dots" and cannot implement this knowledge into real life. He does not talk much now, but when he did he was able to discuss all manor of things - climate change, covid, political goings on, but was entirely unable to relate these things to what was happening in his life. At the beginning of the pandemic during the first lock-down we discussed about covid and he talked quite rationally about it. Then he said that he was allowed out for a walk and walked down to the village square where he was completely bewildered because all the shops were closed. I reminded him about covid and he could still tell me about all the restrictions, but could not make that jump from theoretical knowledge to understanding the situation in front of him.

 

[SeaSwallow]

@canary My husband can mostly ‘connect the dots’ but I am realistic enough to know that will change over time.