I’ve just had a lovely catch up sleep in the Girls Dormitory. In my dreams I kept seeing this woman. I’m sure I served her tea here yesterday. I wonder if she’s asleep on the sofa?
Dementia One Sheet To The Wind
The picture above gives a glimpse of Maureen’s functional capacity. It was taken on Monday after she had been trying to put a sheet on the line for some time. When I went out to straighten it I found it was being held by a dozen pegs.
There are three people who have any idea of how Maureen really is. Apart from me only Chloe and Gail see her in action: witnessing confusion and dwindling functional capacity. Maureen can still talk a good game and will do her best to convince anyone that she is functioning well: nothing could be further from the truth.
She was in good form when the G P checked her out today. There is no sign of infection so we are either dealing with a dip or progression of her dementia. His advice to ‘stay happy and remain active’ would have been forgotten as soon as the doors closed on our car.
I was pleased to see a display at our Medical Centre, this morning, encouraging carers to make themselves known to their G P. Our usual G P is back on duty tomorrow and I intend to seek an appointment to chat to him about my caring role. I will also make the point that only three of us are really aware of the level of Maureen’s confusion and dwindling functional capacity.
Dementia: Something Has To Give
I have taken a number of measures to address the increased challenge of changes in Maureen’s presentation. Something has to give if I’m to have sufficient time and energy to meet Maureen’s needs. I’ve decided to drop out of a couple of distance learning courses on dementia. I can use professional staff, the Alzheimer’s Reading Room, and Teepa’s Snow’s tutorials to address specific concerns as they arise.
I need to slow down on my attempts to make the house more Dementia Friendly. My early morning assaults on various parts of the house have to stop. Moving my clothes into the spare bedroom to help Maureen see that the front bedroom is hers will have to take its time. I have to learn to strike a balance between having a reasonable amount of rest and making the home environment more suited to Maureen’s needs. Opportunities for day-time catch up rest need to be seized when the opportunity arises: I had a lovely couple of hours’ yesterday afternoon.
‘Maureen’s car’ will remain on the drive unless she needs me to take her somewhere or has given me permission to use it.
I have now requested that we shorten Monday and Wednesday’s carer sits by an hour, and have an additional two sit on Tuesday or Thursday.
My next away day has been pencilled in for April the 6th. We are going to review the arrangement for wall to wall care closer to the day, to address Maureen’s complaints about being ‘baby sat’.
We both need to have a health check with our G P. It is possible that infection is causing changes in Maureen’s presentation. I am always reassured that Dr Munjal keeps an open mind on additional medication being the answer to changes in presentation. Current wisdom is that such medication should carry a black box warning.
I need to chat to Dr Munjal about my strategy to avoid surgery on my shoulder. I also need to seek his advice on how to improve my sleep pattern and get more rest.
Our journey seems to be getting more arduous and we need to see if we can take an easier route. We are fortunate that some of our advisers support our biopsychosocial approach to dementia. I shudder to think what it must be like to have to deal with, and be surrounded by, those who are sticking to the biomedical model.
Dementia: Wear The Badge!
I have recently signed up to MindStart and their approach to dealing with changes in ‘behaviours’ is very helpful to me at this moment in time. It supports the approach I am now taking to changes in Maureen’s presentation. Perhaps a badge or a tattoo might help me keep on track!
Dementia: Barking Up The Wrong Tree
In the last few days I have been struggling to deal with changes in Maureen’s presentation. I have been focusing on her confusion and fears. My detective work led me in the direction of a dip or further progression of dementia. Then this morning I realised I had been barking up the wrong tree: focusing on symptoms rather than causes. I had been going down a very risky path that may well have led to a referral to Mental Health and dodgy medication.
The trigger for the change in my thinking was something that Maureen said yesterday: ‘I’m being treated as if I’m stupid’. That is a valid opinion from someone of high intellect. As I have asserted on many occasions stroke has caused brain injury and Maureen’s recovery continues. It is being hampered at the moment by fear and an approach to support that she regards as patronising. Little wonder there are changes in her presentation: she is signalling she is not happy.
I am hoping that setting up the Girls’ and Boys’ Dormitories may help with the fear of men issue. The initial signs are positive and I managed to sneak in for a brief cuddle early this morning. There is more work to be done on helping Maureen feel safe and establishing this is her home.
Helping Maureen to regain her confidence and become more assertive requires careful consideration. The initial focus is easy: it is on my behaviour. I need to follow Maureen mantra of ‘slowly slowly catchee monkey’ as I try to find a way of being that moves things in a positive direction. As always I’ll keep you posted and look forward to feedback on how I’m doing.
Dementia: All Hands On Deck
Good news at last: I’ve just heard that my appointment to see the Orthopaedic Surgeon about my shoulder has been delayed. It’s good news because it gives me another month to see if the exercise regime that my physiotherapist has given me will ease my difficulties. As we all know there are no guarantees with surgery and anything could happen. Obviously if hard work cures my problem that will be a real bonus and the thought of being one handed following the operation is far from attractive. Any Care Partner needs all hands on deck with dementia the Elephant in the room.
Dementia: Looking Back: Looking Ahead (Week 10)
There have been marked changes in Maureen’s presentation during the last week. Confusion has been rampant on many occasions, alongside real fears about men. Yesterday fear became terror as Maureen felt she was ‘losing her memory’ . The episode in the afternoon was repeated in the evening but my efforts to take Maureen ‘home’ were not as successful. On return from the second trip of the day she said I had ‘ brought her back here again’, and ended up spending the early part of the night on the sofa as ‘she didn’t have a bed here’. It seems likely that the days of sleeping together in the marital bed have gone: it’s the spare room for me from now on.
Once again I need to ‘up my game’ to cope with the Maureen’s reality, and explore additional support to cope with ongoing daily challenges. I have to continue providing Maureen with the level of support she clearly needs, and seek opportunities for respite from the ongoing challenge of this dreadful condition. I will continue to post daily updates of how our journey progresses.
Good start to the day with a couple of hours making the house more dementia friendly. I have disposed of some junk, and simplified the set up in the kitchen. The early signs are Maureen thinks I am her husband this morning. It will be interesting to see who she thinks I am on my return from the Leisure Centre when I offer her breakfast.
Dementia: From Fear to Terror
This afternoon marked a radical change in Maureen’s presentation: from fear to terror. After we had prepared Sunday Lunch together she said ‘she needed to get back home as her husband would wonder where she had got to’. I acccepted her reality and she told me that she lived in Coventry with her husband who was a long distance lorry driver.
She was pleased to accept my offer of a lift back home. I drove around for a short while and she recognised where we lived as we neared home. I let her into the house and bade her farewell as she entered our home. She thanked me for the lift and waved me goodbye.
I returned home after a brief chat with my next door neighbours. Maureen was pleased to see me as she was very frightened and said ‘she had lost her memory again’. She complained that ‘the hospital had not told her how to get her memory back when she had lost it once before following stroke’. I gave her all the reassurance that I could think of and held her tight.
Maureen ate a good lunch and we watched televison for a while. As I post this she is sleeping on the sofa. I hope I am able to get some quality rest tonight.
“The Last Laugh”: seeing dementia differently
Kate Swaffer is an amazing woman and I’m inspired by the number of intitiatives she is involved in.
It never ceases to amaze me what I end up getting involved in! After asking Dr Mark Cross not to use one word on a Facebook page he had set up, we have connected, met over dinner, and are involved with a wonderful producer Alison Black in filming a documentary called “The Last Laugh”. Here is a trailer we have made for it…
Dementia: Fear and Confusion At Bedtime Returns
This is the second night running that Maureen became distressed and confused as she prepared to go to bed. We had enjoyed a fairly good morning with a long walk before lunch. The afternoon and evening passed relatively peacefully, apart from Maureen saying there was a little boy in the corner of our lounge watching us as we played a couple of table games..
Shortly after 10pm she came down from getting ready for bed and said ‘they were having a meeting to try to find a place for her in the Ladies Room’. She said ‘she had to wait until they had finished the meeting before she knew where she was going to sleep’. When I tried to help she told me firmly ‘that it was nothing to do with me, and I should go to bed’.
At around 11pm Maureen came upstairs and I went to meet her as she arrived at the top of the stairs. This was a silly mistake and caused her to screeam. It took me a while to calm her down and assure her that there won’t be a man in her bed tonight. She looked so distressed as she arranged her pillows and sorted out her bed.
I think it is fair to assume that Maureen continues to ‘time travel’ and is haunted by demons from her past. The Clinical Psychologist from the Stroke Team warned me that Maureen’s fear of men was likely to resurface as her dementia progressed. This is so difficult to deal with as Maureen is often unclear who I am, and may see me as someone who might cause her harm. Trying to comfort someone at arms length is quite a challenge. Hopefully she will remember that I am only a partition wall away and to yell at any time of the night if she needs me.
Maureen did remember where I was during the night and early this morning. She popped in to see me around 2 am before going downstairs for a while. I stayed in bed and listened as she returned to her bedroom and shut the door. When the coast was clear I went downstairs and turned out the lights she had left on. Two hours later she was on the move again walking from one area of the house to another.
I left Maureen to her roaming for a while and got up when I heard her crying. She told me ‘she was lost and couldn’t find her way around the house’. I carefully guided her back to her bed and things went quiet for a while until I heard her crying. Then it all made sense to me when she said: ‘my mum’s gone downstairs’
When Maureen lived with her parents she shared a bedroom with her mum. Her dad had epilepsy and slept in a room of his own to prevent his fits from harming his wife. Therefore it’s not surprising that Maureen is confused about where she sleeps: she can’t find her mum.
I’m hoping that the sun comes out again today, and we will be able to go for a walk. The Boating Lake and a play area for children is within walking distance. There’s nothing like watching little ones in the Sand Pit or on the Pirates Ship on a sunny afternoon.
