I made a call to Single Point of Access early this morning to ask our Key Worker to call a meeting of our Multi-Disciplinary Team within the next few days.
I’m sick and tired of contacting professionals who really haven’t got time to talk to me.
I hear there have been discussions but action speaks louder than words.
It may be helpful for busy professiona that there is a Best Interest meeting in the pipeline: probably a month away.
That doesn’t help Maureen and I now!
After a long three-month journey, there is new land ahead:
Any extension to your dwelling is an inevitable stressor in your life. The trials and tribulations of the last 12 weeks all became worthwhile when I saw Maureen smiling as she stood in the Sun Room yesterday. When she talked about how we could sit out there in the winter I couldn’t have asked for more!
As I draw this post to a close Maureen has just woken up frightened that she had been left alone with the baby. She says she is worried that the baby is too cold. I have helped her to warm our offspring up and reassured her the little fellow is now safely asleep. It is so helpful that I have been able to talk about these episodes with my Admiral Nurse and now have some idea how to reassure Maureen when they occur!
Our Anniversary Celebrations went well with a day of togetherness. We didn’t do anything special but I tried to spoil my Bride with lots of TLC. She loved the evening concert with Andre Reui and despite my best efforts could not understand the consequences of a poor signal from Talk Talk.
Maureen was reluctant to join me for ‘the honeymoon’ and chose to remain downstairs, The Baby Alarm clicked into action at midnight with incessant sobbing from our lounge. When I joined her downstairs, Maureen was convinced that they were chopping the heads off her relatives. She showed me photographs where she believed the heads were missing. It took me quite some time to console her and persuade her to resume lying on the couch. Less than two hours later she was awake again.
As I lay on the single bed in our lounge, I was gently awoken by my wife who was anxious to attend to my needs. Apparently, I was unwell and she was keen to make sure I had everything I needed. My plea to be allowed to go back to sleep went unheeded and she continued to return to my side after walking around the house.
There are aspects of Maureen’s presentation at the moment that I’m choosing not to share on this Blog. From my point of view, they are very concerning and I need to discuss such matters with appropriate professional staff.
My plea at the moment is to reinstate support that used to be available in my hour of need. I have never understood the wisdom of withdrawing Maureen’s Care Coordinator or removing my access to a Support Worker from the Alzheimer’s Society.
Today is our wedding anniversary: it’s 19 years since we tied the knot.
From our perspective Wedding Day by the BeeGees says it all:
However, Maureen’s viral infection is still in full flow and impacting upon her presentation. She ‘wanted to go home’ yesterday and it took me over two hours to shepherd her back home. There were also several times during the day when her behaviour was either very challenging or puzzling. Her confusion about how to use the toilet has surfaced again and will have to be addressed if it continues. It was worrying that the bathroom floor was extremely wet as I turned in for the night.
The daily challenges continue to arise but that does not lessen my resolve to live together as husband and wife. Our newly extended house should be the only Care Home we will ever need.
On our Special Day, our approach will be no different to any other year. We don’t give each other gifts: I have always said Maureen’s presence is my present!
I drafted the above before turning in last night. Maureen has been awake for the last half an hour or so. She is looking after four children: talking to them incessantly as they follow her around our house. She has just taken them all to the toilet. It will be interesting to see the state of the floor in the utility room when they have finished.
I hope I can find where have I saved that article on hallucinations and delirium!
Maureen’s infection is continuing to impact upon her presentation. She sang beautifully throughout the morning and afternoon yesterday as I put some of her favourite LP’s on the record deck. Unfortunately, when she awoke from our afternoon nap abject confusion led to a difficult early evening.
Our standoff in the street must be a familiar scene to neighbours by now, as negotiations take place on all sorts of fronts. Yesterday, the issue was whether to walk to the local shops or use the car. Eventually, we did neither and the suggestion of a cup of tea brought us in from the street. I then managed to cool things down further with potato wedges and scrambled eggs.
We were both in the same bed by 8 ‘o’ clock last night, worn out after the events of the day. This morning Maureen’s infection is dreadful. However, this is not a time to be discouraged: this is a lesson in patience!
Reggae has always had great resonance for us. The words of the above number have great significance in our household this morning:
Maureen’s Tea Boy has additional duties this morning: ensuring tissues are at hand!
My early morning greeting from Maureen was not easy to handle. She woke after we had both had a couple of hours rest wanting to go to the toilet. I tried to direct her without success and received a barrage of complaints and insults: ‘there isn’t a ladies, the floor will be covered in pee, there is nowhere to sit down.’ Half an hour later I eased her upstairs and the deed was done – although she told me she had used the floor!
Once relief had taken place where to sleep became the next issue. The familiar complaints of ‘everywhere smells, I wouldn’t get into bed with you and animals have been in the bed’ was played out; along with insults hurled in my direction.
Trazodone sits in the cupboard without an instruction leaflet and unopened. The message has been that ‘it will help you’. My research along with comments from many people who follow this blog suggest otherwise: Maureen doesn’t need a chemical cosh!
The Best Interest Meeting is scheduled for early November. Such a prospect is no help to me in the early hours after World Alzheimer’s Day. I’m hoping that this morning’s call to Single Point of Access will result in an immediate gathering where adequate care and coaching will be put in place. Perhaps that would be an appropriate moment to hand back the bottle of Trazodone!
Update at 6.15 am:
Good News: I managed to get further sleep and Maureen has a cold: no wonder she was grotty when she woke earlier!
Bad News: A few days delay in the completion of our renovations due to an understandable mistake by a plumber yesterday.
A helpful creed to live by from the Alzheimer’s Care Resource Centre:
I’m am breathing properly, softly and deeply as I try to figure out where the hosepipe issue has come from. For the second morning running, Maureen has been scared that ‘they are going to turn the hosepipe on her’. I can understand that she may have been dreaming that she had left potatoes cooking when she awoke at 3.30 am this morning but where have the fears about the hosepipe come from?
Sorting out my breathing is relatively simple. The test will be whether I can embed the other ten things in the above list within my approach to life!
George Rook made a good point in his <BLOG> yesterday: there need to be some radical changes in how we approach dementia in this country. There is only one thing I would add to George’s excellent post: DEMENTIA IS NOT A MENTAL HEALTH CONDITION!
Dementia is concerned with changes in the brain it is not caused by what is going on in the mind. In my opinion, the sooner we remove dementia from under the umbrella of mental health, with its predominantly medical model the better!
We had a tough day here yesterday with two electricians with us all day. I breathed a sigh of relief to hear that rewiring is not needed but more work is needed before we are safe and sound. Maureen found it difficult to understand why power was being switched on and off throughout the day. Her response varied from; interacting with ‘the men’, to wanting to go back to the peace and quiet of her ‘own home’. Her performance in the evening was amazing as she sang and danced to an Andre Rieu concert on YouTube for over an hour!
I have been pressing for a review of Maureen presentation. This has resulted in the suggestions that a Best Interest Meeting is the way forward. I’m not sure that a BIM is needed after how she presented yesterday:
Maureen’s presentation will always be a reaction to her environment and how she is being treated. If living on a building site for three months hadn’t changed her presentation there would be real cause for concern! Who doesn’t want to get away from it all when your house has been turned upside-down and you no longer know where anything is?
What really needs to be resolved at the moment is:
Maureen was a revelation in the company of her family yesterday. Once our renovations have been completed and there is adequate room for her relatives to stay I am convinced we will see a very different Maureen.
Now here’s a thing: earlier this morning I reminded Maureen that four of her grandchildren had been here on Monday – she had forgotten. As I’m about to post she has just said ‘it was a nice day yesterday’ going on to explain how much better it was to be out in the fresh air rather than sitting in the house when visitors are here. Such comments give me hope that neuroplasticity is fact rather than fiction!
Dementia: Sharing The Good Times 