- After discussions with staff on the Konar Suite yesterday I’m feeling a lot happier.
- It seems likely that Maureen will lack capacity about her health and welfare needs.
- Best Interest decisions may well feature in Maureen’s Treatment Plan.
- There will a partnership approach to the development of her Treatment Plan.
- We have agreed; I’m the expert on Maureen: they are Specialists in Dementia.
- Maureen’s reluctance to take her prescribed medication or have an ECG continues.
- At night Maureen continues to sleep in a chair in the company of staff.
- She told me she doesn’t like her room and finds the bed uncomfortable.
- When I offered to sit in her room with her yesterday she declined.
I’ve just spoken to the Konar Suite and once again Maureen slept in a chair in the lounge last night. The good news is that she has been in her her bed for the last hour. My sleep isn’t much better.
I’ve been up from the early hours putting furniture in our Sun Room. It looks great now with vinyl flooring down a few plants delicately placed alongside a table and a couple of chairs. It will be interesting to see what Maureen makes of it when she is home. I will post some photographs of my work tomorrow.
I got a distinct feeling that I was ‘Battling Giants’ yesterday – a position that Gladwell explores in his book ‘David & Goliath -Underdogs, Misfits and the Art of Battling Giants’. In my early dealings with staff at the Konar Suite, I was in despair with haunting memories of a professional belief in ‘chemical imbalance’ from my time as a patient at Harrison House. Fortunately, late on a Sunday evening the Head of the Unit appeared and eased my troubled mind.
My memories had been sparked by a meeting with two Nurses from the Konar, with one taking notes on a Lap Top. When I heard that Maureen would be seen by a Consultant in the morning and he might prescribe medication then my concerns intensified. I wondered how on earth anyone could assess Maureen’s needs when she had been in Konar for such a short period of time?
It wasn’t just the informal gear the Head of Unit was wearing that impressed me; it was her compassion and sincerity. Along with: ‘if you have any concerns at any time then ask my staff to contact me’. She assured me that ‘Konar was not in the business of medicating anyone for the sake of it and the priority was to assess Maureen’s needs’.
David knows that Goliath can always use the Mental Capacity Act to assert what is in Maureen’s Best Interest. However, he is reassured by extracts from Konar’s Misson Statement:
‘What Services do we offer:
Konar provides an evidence-based, high quality, individualised service …….
Our Aim is:
- To provide person-centered care, addressing the whole persons needs including body, mind, emotion, and spirit.
- To work with carers where appropriate ensuring they are included in all aspects of care, future needs, and treatment.’
I’m reassured that Maureen is in good hands at Konar: my initial panic has ebbed. As David, I have a Mission Statement and a friend indeed whenever I have concerns!
In his Newsletter yesterday Roy Lilley encouraged us all to say thank you to nurses.
There are four nurses who I have already thanked for their support in the last 24 hours:
Firstly, a Practice Nurse at Clee Medical Centre who confirmed I had a viral infection.
Secondly, a Nurse from the Konar Suite who gave me advice during the day on how to manage Maureen’s presentation.
Thirdly, my Admiral Nurse who has been nominated as my first line of contact. on all matters.
Finally, another Nurse and a Support Worker from the Konar Suite who made a home visit in the early hours and have provided ongoing coaching via telephone.
It is reassuring that I have nurses available for support 24/7 to enable me to continue to care for Maureen at home. Unfortunately, despite lorazepam, it has been another sleepless night and I’m rather tired.
I have been assured that Maureen will be assessed this morning. She appears to lack any semblance of cognition: struggling to understand basic interactions. The times when she doesn’t recognise who I am are becoming more frequent. She is currently chattering to imaginary family members and young children about events that have some resonance.
I’m extremely concerned and wonder what will be the next steps on this journey?
Two really good things happened last week. Firstly, our longest serving carer had a little girl: we understand mother and child are well. Secondly, her replacement managed to wash Maureen’s hair and give her a full body wash. It looks like the ‘new kid on the block’ is now Maureen’s hairdresser. Consequently, I have withdrawn from today’s Teepa Snow Webinar on Bathing Issues as personal care needs to be in the safe hands of ‘the ladies’. My focus needs to be on the completion of our renovations and securing adequate coaching.
The good news for the forthcoming week is that our decorator will be on site today and a joiner later in the week. I would estimate that we are still a couple of weeks away from completion; with further plumbing and electrical work pending.
There is still uncertainty over the coaching I’m legitimately entitled to as Maureen’s Care Partner and whether Maureen should have a Care Coordinator. Clarification on these issues may not take place until the Best Interest Meeting on the 3rd of November. In the mean time my Admiral Nurse is doing her best to fill in the gaps in available support.
Maureen is still struglling with her upper underwear and trying all sorts of permutations for support. I’m hoping that Girl Monday will be able to help her with this today and she will gain some respite from the attendant distress. I summoned help on that front last night but by the time night carers arrived Maureen had dropped off.
We had another ‘visitor’ during the early hours when Maureen believed her mum was beside her on the sofa. She seemed to gain great comfort from believing her mum was close at hand: some hallucinations have a positive impact!
There is some bad news this morning: my infection is not letting up; my nose is dripping like a tap, I have a persistent cough along with discomfort in my chest, and my legs feel like jelly. I have already messaged our Key Worker that additional support may be needed if I am to keep Maureen safe and sound over the next few days.
There is no doubt who is the musician of the week.
We have called up Andre on YouTube on most evenings .
Maureen waves at the screen and applauds every number.
‘You’ll Never Walk Alone’ is my approach to our journey:
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!
Update at 3.15am:
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!
Reggae has always had great resonance for us. The words of the above number have great significance in our household this morning:
- Maureen’s cold broke yesterday. I have never been so pleased in my life to see a loved on coughing and sneezing: at last, there was an explanation for her presentation – infection!
- I had a long conversation with the Specialist Doctor who prescribed Trazodone yesterday and she understands why I haven’t opened the bottle. We are very fortunate that staff within NAViGO treat the person rather than the disease.
Maureen’s Tea Boy has additional duties this morning: ensuring tissues are at hand!
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!
After a great deal of thought, and frequently changing my mind, I have decided to go for it this morning:
When I first heard that two family members and their four children wanted to visit today I was aghast. My first thought was didn’t they understand? How could anyone conceive that someone with severe dementia could cope with such a gathering? So I suggested breaking up the visiting party and leaving some of them in waiting until we saw how it was going. This morning – I think – I’m going to leave it to their discretion as this will mean I have the time to clear up some important outstanding business
If the visiting party arrive before one ‘o’ clock I will hopefully have time to resolve some critical issues for the forthcoming week. Some of them involve complex matters about my relationship with certain organisations. I’m not a believer in doing dirty washing in public – unless I have to – and I’m hoping that a little bit of positive risk-taking today will be good for all concerned.
Maureen’s early morning response to the news that visitors are coming today is ‘I don’t know what they look like’. Showing her photographs and talking about her grandchildren yesterday has long since faded from her memory. Her current focus is on trying to solve a support issue and lambasting me with a comment that the black bra (which is, in fact, a belt) belongs to my girlfriend. It’s getting hot here now as she ups the anti shouting out that ‘it’s hers, not mine and it stinks!’ The bra has now been thrown into the wash basket and Maureen is shouting that ‘fat arse has had all of her underwear’.
A cup of tea and a bit of humble pie is my only hope: at the right time of course!
Last week Maureen brought me the Order of Service for the funeral of her daughter who died 5 years ago today at the age of 54. I’m not sure she knew what it was she just gave it to me saying that ‘they were trying to steal it’
We have just spent over an hour talking about her beautiful daughter, as some of her favourite tunes playing in the background. We have kept our promise to frequently use her daughter’s name and never say ‘we have lost her’.
The Order of Service is now a focal point in our lounge and I know Maureen’s daughter will feature constantly in our conversations throughout this Special Day