Amazing Susan Macaulay never said a truer word than in her comment yesterday:
Tag Archives: Confusion
Dementia: Lost, Confused and Bewildered
We are both struggling this morning. Maureen clearly doesn’t know where she or who I am. A short while ago she told me that lots of men were telling her they were her husband. She also keeps asking me if we are going to go home today. These themes are not new but she appears to be more frightened than I have ever seen her as she tries to deal with her confusion.
I’m also bewildered this morning by two things that appear to be lost. I have spent ages looking for one of Maureen’s favourite slippers. They are particularly precious to her as she bought them with some money her sister sent her shortly after her stroke. I have hunted high and low in all the normal hidey-hole’s and they are nowhere to be seen. I’m also similarly mystified where a plastic container with all the remedies for Maureen’s sore mouth and tongue has gone.
Maureen is now spending an increasingly amount of time being lost. Her ability to recall is minimal – on rising this morning she became very distressed that she couldn’t find her way back to where she had been sleeping. She continues to struggle to find her belongings and the accusations about people stealing her things is now a daily occurrence. These aspects of her current presentation would hardly be helped by moving her out of her current surroundings into a Care Home so that her Care Partner can have a much-needed rest: home based care remains the safest option!
Dementia: As Blind As A Bat?
Yesterday’s visit to Madyhamaka failed to get me the respite I was seeking. Maureen didn’t like it in a strange place – particularly as she was thinking that we were going to visit her mother. The whole experience has left us both worn out and put Maureen on red alert about my motivation for doing anything.
When I reflect on my aspirations yesterday they were a clear indication of myopia: a short-sighted approach to the real issues here. The issue isn’t about seeking some form of a Respite Break it is concerned with getting more rest from my role as a Care Partner. It is fortunate that I’m due to meet our Key Worker this morning. Unfortunately, his agenda is preparation for the Best Interest Meeting; while mine is how to increase my opportunities for rest until we gather on the 6th of April.
As Maureen thought I ‘tricked her’ again yesterday I think it would be unwise to carry out our ‘cunning plan’ on Friday. Care Homes and Maureen do not mix and to con her that she is just going out for a meal and then leave her at Homefield House would lead to accusations that I had gone completely ‘batty’!
Dementia: ‘Peach’ Is No Distraction
I decided to remind Maureen today was her Granddaughter’s 18th birthday. Conversations earlier in the week had resulted in ‘she doesn’t send me a birthday card, why should I send her one’. However, as her mother died and we undertook to try to maintain a close relationship with the young lady I reminded Maureen of the special occasion this morning.
Things went exceptionally well for a while with Maureen singing along with her Granddaughter on YouTube. This is one of the numbers that Maureen really likes:
Maureen accompanied Maeve for quite some time, waving to her and clapping after every number. Then problems emerged as Maureen tried to work out how to send a birthday greeting. My explanations were not well received as I tried to help her understand that YouTube was not interactive and Maeve could not hear her accompanying her singing. I even suggested visiting the Birthday Girl in Coventry but that fell on deaf ears. After a while, things turned really sour with Maureen returning to a familiar theme of being brought to this house against her will.
When Maureen is ‘wanting to go home’ there is little I can do to shift her reality – it is one of those occasions when distraction and redirection rarely work. I will need additional support today if I’m going to survive Maureen’s current presentation. Once again I’m looking to our Key Worker to come to my rescue with his usual person-centred approach to our situation.
One final point it is my guess that the forthcoming Best Interest Meeting has triggered unfortunate changes in Maureen’s presentation. Her advocate was here yesterday and the last time she was here Maureen was distressed for a couple of days.
Dementia: Meditation Is The Answer
Following a period of considerable upset for Maureen, there are three simple solutions to alleviate a repetition of last night:
- Remove her car from our drive to prevent her focus on others breaking into it.
- Switch off a noisy radiator in our bedroom.
- Ensure that whenever she sleeps the room is not in total darkness.
We turned in early last night to sleep in the marital bedroom together anticipating the restful night that we both needed. Maureen woke shortly after midnight and lambasted me for allowing other people to get into her car: she could see them sitting in it from the bedroom window. Her diatribe continued for almost an hour with a level of personal abuse I had never experienced before. At one stage I thought I would need to call for reinforcements to settle her down but I made do with a call to Single Point of Access. Two hours later there was a different focus for her distress.
As I slept downstairs I heard a loud bang as Maureen hurriedly descended the stairs yelling about insects in her bedroom. As she joined me in the lounge she said that there was a swarm of wasps attacking her. It didn’t take me long to assure her she was safe with me and I managed to settle her on her favourite sofa and she went to sleep almost as soon as her head hit the pillow.
My three action points above give me a sporting chance of having a better sleep tonight. I had phoned Single Point of Access to request our Key Worker to organise a night sitter but that is no ready-made solution as a female in the house overnight makes Maureen suspicious. What has helped after being woken from deep sleep is a short period of meditation to enable me to clear my mind and go back to sleep.
I plan to blog again at 7 am as I post on a very special birthday.
Dementia: From The Inside
My Support Worker from the Grimsby Branch of the Alzheimer’s Society sent me this video a few days ago:
As I return to posting on this Blog following my self-imposed Gardening Leave the video reminds me that dementia is frequently giving Maureen a torrid time. Therefore, my role as her Care Partner is to attempt to minimise her distress.
Dementia: What A Bloomer!
I blew it last night to spoil a really positive start to our short- break in Nottingham. My Bloomer was quite simple: I went to bed and left Maureen listening to music with her brother in his kitchen. When I replay my action I just slipped away and went to bed without even saying goodnight. We all paid for my shortsighted behaviour, fueled by tiredness, later.
Maureen’s reaction to being encouraged to sleep in a strange bed with an old geezer was unsurprising. The old fellow with sleep in his eyes was not her husband, nothing and no one could persuade her otherwise. After a considerable disturbance with verbal abuse hurled in all directions she bedded down on a sofa in the safety of the lounge.
The old geezer managed to get her in bed beside him at half two after she emerged from the bathroom. Maureen bedded down beside her husband like a lamb and has slept fitfully since.
We are planning to see Maureen’s sister this morning. This will be a major distraction for us all: visiting someone who lives alone and has serious memory problems of her own. My guess would be that Maureen will be at her compassionate best this morning as she coaches her little sister on how to cope with her own memory issues!
Dementia: Cynophobia -Maureen’s Fear Of Dogs
Maureen’s extreme fear of dogs (cynophobia) dominated yesterday afternoon. It is the result of witnessing a dog bite her mother when she was a little girl and seeing blood flow from a leg wound. She is, therefore, uncomfortable with any dog near her and will cross the road to avoid them.
The dog issue emerged following a conversation with our next door neighbour who we chatted to following a short afternoon walk. He informed us that a new dog was pending following the death of a previous pet. This conversation led to Maureen thinking that I was going to have a dog and is indicative of how easily she gets confused at the moment.
Once we were in our house, Maureen was convinced there was a dog in our lounge. She was said their smell had permeated the house and our clothing. Despite my reassurance to the contrary, this theme continued for some time with Maureen venting her negative feelings about canines. In fact, she said she was moving out because of dogs in the house.
There are no dogs where I’m hoping we will be around noon. Dan the Man, our chauffeur, will be here this morning to take us to visit Maureen’s brother and his wife. I have shifted my aspirations from the Buddhist Centre near York as I think Maureen will warm to some family time, rather than being in unknown surroundings.
It will be good to be back in Nottingham visiting old haunts that are familiar to Maureen. I have a distant memory of being told as a teenager that was where there were lots of beautiful girls: I have been privileged to share my life with one for over a quarter of a century!
Dementia: Moderate To Severe?
In my opinion, there is a need to review Maureen’s current presentation and her diagnosis of moderate to severe dementia. The last time any review took place was eight months ago. In the last few weeks, there have been significant changes in her presentation along with a further decline in her cognitive and functional ability.
I am meeting my Admiral Nurse on Thursday and will request an assessment by Occupational Therapy from the Memory Service. They will be able to advise me on suitable adaptations for our home and how to continue to be a supportive Care Partner
One thing I am clear about is how Maureen thrived on Thursday during our ‘Away Day’ in Coventry. She was in such good form in my brother’s Nursing Home that the audience grew as news of her dancing spread. Dan the Man will be here again on Tuesday and we’ll be off again for another break from Cleethorpes. The following week offers even better opportunities for taking ‘Maureen to the Mountain’ with an important 18th birthday party and Mother’s Day.
I don’t see any rush for the forthcoming Best Interest Meeting and I’m hoping that those who have to be wary of the Mental Capacity Act will have the grace to cut us a little further slack so we can add a little more normality into our lives.
Maureen is always keen for ‘Ginger’ to come to see us and I sincerely hope that in relation to the BIM our Key Worker is the only person who visits our home in the next two weeks!
Dementia: Lost, Bewildered and Frightened
Maureen seemed totally lost late yesterday evening and I encouraged her to sleep it off. She reappeared from her nap after a short while and was completely lost in her surroundings despite my efforts to ground her. When it was time to bed down for the night it took a long time to settle her on her choice of the sofa. She has been awake several times during the night complaining that the people here are trying to frighten her and she can’t wait to get out of this place. At 5 am she was struggling with a dry mouth and wondering if someone else was needed to help her with medication.
The coaching on medication went relatively well yesterday but it threw up all sorts of anxieties for Maureen about getting it right. One thing it did address was just for once I was sure her tablets were taken. There has often been evidence that Maureen has not taken her medication and yesterday I found more tablets in places where they should not have been!
There are a couple of things I’m going to try today in an effort to change Maureen’s presentation. Firstly, I’m going to ask one of her sons to issue a rallying call for immediate family to schedule regular contact and visits. Maureen’s continual question about where are my family needs to be addressed. Secondly, I’m going to try to change her environment by encouraging activities that remove her from the sofa unless she is clearly in need of further rest. Rachael Wonderlin has posted a video clip on her blog that will help me focus on this mission:
‘Such a roller coaster
‘.
I had one heck of a ride yesterday often finding it difficult to console Maureen when she was frightened out of her wits. How on earth she coped when she was even unclear who the only person who was here to support her was I will never know.
Despite feeling exhausted I have decided to try to tough it out until the Best Interest Meeting on Thursday. Although I have never been one for more than The Walzer’s I need to ‘stay on the ride’ until I can get together with our Multi-Disciplinary Team to discuss where we go from here.