It has taken a long time but the penny has finally dropped- the Best Interest Meeting on the 6th of April is now the only way forward. Maureen continues to be a combative mood, struggling to accept that she lacks the capacity to decide upon her future care and accommodation. There is little point in relating her ongoing diatribe about her incarceration here and my shortcomings. This is ‘Mrs Dementia’ at full throttle rather than my lovely wife. My Support Plan is no longer adequate to cope with her presentation: Carer Burnout is looming.
I know that the hard-working professionals who are doing their level best to support us will understand how difficult it is when a loved one is changing beyond all recognition and you are doing your best to hang on to what is left. Therefore, it is reassuring that the meeting on the 6th of April will seek to protect both of our interests.
Our Key Worker managed to put in some additional support yesterday and more of the same will be needed until the BIM. ‘Girl Thursday’ also gave me some helpful coaching with a stark reminder ‘not to pander to her’. Worn out after another night with little sleep I was misguidedly giving options to Maureen rather than serving her food that she usually likes. With sleep in my eyes, I had forgotten that she lacks the capacity to make decisions. However, she is definitely leaving here today: ‘no longer prepared to be a skivvy in this Care Home!’
I have just stumbled across this poem which is worth reflecting upon as the BIM draws closer:
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.
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.
I had a real warning yesterday – a distinct reality check. Maureen was distressed throughout the day: initially worrying she was being discriminated against, then making me aware of the consequences of stealing her car, before accusing me of negligence in my role as Manager of this Care Home. Her offensive continued throughout the day at a time when I was struggling to stand because of severe pain in my left leg.
Having bilateral hip replacement has solved one set of problems but it has created others. I am no longer troubled by pain in my hip joints but there are days when I have aches and pains in my legs that I could do without. It is clear that sleep deprivation along with a poor sleep pattern is not giving my body a chance to recover from the daily pressures of being a Care Partner to someone who has moderate to severe dementia.
Maureen was on the attack again early this morning accusing me of feigning injury to gain her attention. Ten minutes later she has cooled down and was pleased that my TENS Machine along with a turmeric based drink may have eased my troubled legs. I hope she remains in good form as our Advocates for the Best Interest Meeting will be here in a few hours.
Two really positives from yesterday as opportunities for Carer Respite appear to be falling into place. Firstly, in the morning I returned to Waltham House Care Home to explore a number of options. I’m optimistic that we have thought through a way of Maureen sampling what is on offer there without causing further distress. Secondly, in the evening I had a really supportive conversation with Maureen’s son, who despite a busy schedule is keen to help to keep his mum remain in her own home when I take a break.
The BIM is bound to focus the need to build Carer Respite into our Care Plan. I am optimistic that plans are emerging that will preserve person-centred care for Maureen and ensure my role as her Care Partner is sustainable. However, the progressive nature of her condition means that our plans will always need to be flexible to take account of the dynamic nature of dementia.
One thing that Maureen craves is to have more time with her family. When we went to Nottingham last week she was a different person in the company of her brother and sister. There were times when she functioned so well that it was difficult to believe that she had dementia. It was lovely to see her with familiar faces visiting old haunts from her childhood.
Maureen forgot that we had been with her family almost as soon as we turned the key to enter our home in Cleethorpes. A few days later she has little idea how long it is since we have seen her brother and sister. However, when I remind her of the sites we saw in Nottingham the smile on her face is captivating. The following video uses a bookcase analogy to explain that the emotional memory remains intact even when dementia marches relentlessly on.
We have no immediate family in Cleethorpes so I have plans to make it easier for us to get together. On Sunday we will travel to the Buddhist Centre in Pocklington to catch up with one of Maureen’s sons on Mother’s Day. In April we will create a rendezvous in Lincoln to meet up with her other son. I’m hoping that these arrangements will become regular events in a monthly cycle. I also hope to set in motion regular respite for myself which will also create more family time.
Maureen has never had a positive experience of Care Home based respite: either being bruised and battered or escaping from ‘captivity’. She has also retained the memory that we have ‘tricked her’ into going into Residential Care. From my point of view telling Love Lies is a daily coping strategy but blatant deceit about Respite Care is a step too far: it will not be repeated. Therefore, home-based care is the only option at this point in time.
I’m hoping that we will shortly establish a regular pattern of long weekend breaks. Ideally, this will involve me leaving here after Girl Friday arrives and returning before Girl Monday departs. I’m hoping that carer support will be supplemented by family presence while I’m taking a monthly break: a person-centred- approach to preventing Carer Burnout. If things go according to plan such arrangements for April and May will be in place prior to the Best Interest Meeting on the 6th of April when Maureen’s future care and accommodation will be discussed.
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.
This is a postcard from my spell on Gardening Leave – a tribute to a great musician:
Update: After checking this out with someone who knows I have just added a further song from Chuck. We believe this was recorded at the Locarno in Coventry – my birthplace:
I have decided to place myself on Gardening Leave from blogging for a while so that I can focus on some important matters.
Our decorator will be here shortly to begin to make subtle colour changes to make it easier for Maureen to find her way around the house. Later in the morning, I’m scheduled to meet my Admiral Nurse where I want to review how we all aim to support Maureen as her dementia progresses.
With Spring firmly in the air, I also want to spend time in our garden planting seeds and tending my vegetable plot. Our builder is imminent to make our patio safer by replacing paving slabs with concrete. Maureen loves to be out in the fresh air and there are one or two others things that need to be done so she can bask safely in this lovely sunshine in the comfort of our garden. I’ll be back soon after a short while on gardening leave from blogging
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!
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!