Mum was sitting in her chair In the Residents Lounge of her Home when I arrived yesterday morning. She smiled when she saw me so I knelt on the floor and held her and stroked her hand. As always the TV was on in the foreground: a cookery programme which some suggest wets the appetite of the viewers. It must be doing it subliminally in mum’s place as her most of her mates had their eyes closed apart from one lady who was knitting.
When Football Focus came on Gary Lineker told us that Big Cyrille would be featured throughout the hour. I’m not sure mum even watched his finest hour as far as we Sky Blue supporters were concerned, so I decided to intervene.
When I asked the owner of the Care Home for assistance to move mum to a quieter spot so that I could play her some of her favourite music she summoned assistance and said: ‘whatever floats your boat’.
Mum was at her best to this one:
She sang, tapped her feet and fluttered her eyelids as we ‘floated our boat’. As carers passed by they said: ‘she loves her music’.
My brother was ready for his lunch when I arrived at his Nursing Home. He scoffed the lot; eagerly taking his lunch from the proffered spoon and would have taken the additional sweet on offer if I had accepted the offer. He smiled occasionally as I gently fed him his meal.
I’m always struck by the contrast between my mum’s Residential Home and my brother’s Nursing Home. There are visiting times where my mum is a ‘no-go areas’: you are not allowed to be around at meal times. Several residents were being fed by their relatives at my brother’s place yesterday and staff were clearly very grateful for their help. I am not aware of any no-go areas in my brother’s Nursing Home!
I wonder if the stark difference between my mum’s and brother’s environment is down to size or the nature of Homes they are in? Mum is in a very small place exclusively for ladies. My brother enjoys the company of men and women residents who live in a much larger Home. It is possible that economies of scale mean that my brother enjoys far more favourable living conditions that my mum. However, from what I have seen person-centred care extends far beyond the welcoming notice boards in our kid’s abode. Visiting times along with rules and regulations are predominant in mum’s place!
Maureen has been incredible over the last three days. Our Little Diamond has worked tirelessly on my daily shopping list of activities. I’m beginning to wonder if she has been using laughing gas as hysterics greet me when I return from my time out.
Maureen’s mood is so positive at the moment. She had a shower and washed her hair this morning with minimal encouragement. Then to cap it all she put on a complete set of underwear for the first time in ages.
Our Key Worker will be here shortly to take Maureen to Alderlea Care Home. She has been at home for a month and it is time for me to have two weeks respite from my caring duties. However, as things are going so well at the moment I’m wondering if a holiday together would be more appropriate. It seems such a shame to put at risk what we achieved in the last few days.
It would be simple for Maureen to accompany me to the Buddhist Centre today and join me visiting family at the end of the week: there’s room for two on all my bookings. It’s really tempting to go for it and leave Alderlea as a fallback position if needed!
I’ll find out this morning if I have got my knickers in a twist based on a misunderstanding. The Local Authority has applied to allow me to deprive Maureen of her liberty. It is perhaps fortunate that their application- despite being accepted by a District Judge – requires revision as it contains several inaccuracies and misleading statements. Consequently, I have been unable to complete my statement and have a meeting this morning to discuss my concerns
What I hope to clarify this morning is that I can exercise discretion. If they really want me to become Maureen’s goaler I may walk away from being her Care Partner!
The Local Authority has made an application to the Court of Protection to allow me to deprive Maureen of her liberty. I guess if I don’t complete the requisite paperwork they will claim she is no longer safe in my hands and lock her away in a Care Home.
I am as keen as anyone else that Maureen is safe. However, I wonder what has happened to the idea of positive risk-taking?
Maureen’s presentation fluctuates and on good days she is as sharp as a tack. If she begins to see me as her goaler that is yet another nail in the coffin of our relationship!
I also do not accept that the local community is a dangerous place: quite the opposite. Our neighbourhood is full of people who look out for Maureen and many kind souls have brought her back home when she has asked for help.
I’m sure that there could be another way. New technology offers all sorts of options to keep Maureen safe in the community. IMHO having the right to deprive Maureen of her liberty is a retrograde step on the path to Kate Swaffer’s Prescribed Disengagement!
A recent article in Linkedin caused me to think about how to deal with Christmas now Maureen’s dementia is classed as severe. Written by Rick Phelps it made the point that flashing lights, along with lots of noisy folks around, are the last thing he needed during the Festive Season.
When Maureen and I were out walking the other day I asked her if she would like us to put up a Christmas Tree. She responded with we didn’t need to trouble ourselves as there were already plenty around. However, we one spot of impromptu carol singing that evening and some friendly neighbours were delighted with our efforts.
Maureen woke this morning with anxieties about not wanting to get up the chimney. Just to ease her concerns I held her tight, told her she wasn’t going anywhere and burst into song:
Happy Christmas and a Healthy and Peaceful New Year
Yesterday was a good day full of really pleasant surprises. During my early morning swim, I resumed chatting to a woman I had spoken to the previous week. From my routine in the water, she had gathered that I was addressing the consequences of hip replacement and she was doing the same. As we chatted we realised our paths had crossed on a previous occasion when Maureen had taken her on a hike around the Boating Lake as I exercised at the Leisure Centre. Maggie was another excellent carer lost to the cause because as she put it: ‘it was costing me money to work for that Agency’. She had decided to call it a day three years ago as she was fed up of the minimum wage, irregular hours and no time or payment for travelling between calls.
I could hardly believe my eyes when I popped in to see my dear wife shortly before noon. She was fast asleep lying on a bed in a room that she had refused to enter on the previous day. She stirred as soon as she saw me and gave me a beautiful smile. When I saw the clothes she was wearing I was amazed: a pair of new trousers that she had sworn were not hers for a couple of years were being worn. Then it got even better when she held out a hand with beautifully manicured nails varnished to perfection.
Maureen was eager to tell me so many things that she had been doing since my last visit. She had clearly been fascinated by ‘a man who could read the stars’. This man had been to University and his ability to read the solar system had clearly fascinated her. Then she mentioned that she had been involved in craft activities. She told me she had made a cushion cover that she had kindly given to a young boy. In some ways, she regretted her generosity as she would have liked me to have seen her handiwork.
As we sat chatting in Maureen’s room a member of staff arrived and asked me if I would like to stay to lunch. I would have been proud if I had served the chicken hot pot that arrived – it was gorgeous. Maureen had fish although she ate it, she told me it wasn’t quite as good as my cooking. The sweets that arrived were lovely Maureen chose bananas and custard and I had a chocolate sponge with a similar sauce. Our meal would have done credit to a four-star hotel.
Shortly after lunch staff ran a check on Maureen’s vitals and she passed with flying colours. I suggested that it might have been a time when Maureen would have consented to the outstanding ECG but unfortunately, the doctor was unavailable to carry out this assessment.
It would be risky to suggest Maureen is settling on Konar but yesterday was full of pleasant surprises. She remains concerned that her independence is often under threat and resents being told when to take her medication or have a wash and change her clothes. This is a familiar tale that challenges us all as we try to provide the support that Maureen needs and without challenging her independence.
The good news from Konar this morning is that Maureen slept through the night in her room from 8 ‘o’ clock! I didn’t do as well as that but after a couple of hours in the afternoon managed 6 further hours in bed. I’m sure as we both get the rest we need we will be both in a much better position to make sensible choices on our journey!
Most people who came across Maureen yesterday would not have believed she has a diagnosis of severe dementia. He exploits even amazed me:
- She booked her own appointment at the Reception Desk of our dentist.
- She accompanied me and Girl Monday around several shops in Cleethorpes.
- She held her own in an interview with a representative from our Care Agency
- She entertained our Key Worker.
- She saw off a District Nurse who was enquiring if she needed a flu jab.
This morning she has had a shower and washed her own hair.
I had a funny feeling that once the builders had finished their work that Wonder Woman would be back. That doesn’t mean that there won’t be days when things are difficult but we all have bad days!
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.
If ever I needed it the evidence that Maureen needed CHC it was before my very eyes and ears in bucket fulls yesterday. In the morning the singing and laughter from Maureen and Girl Thursday Morning almost drowned out the noise from our plumbers. I went out in the afternoon and Girl Thursday Afternoon told me ‘we’ve been singing and baking’ – I sampled the fairy cakes as soon as I got the chance.
My brother is on Continuing Health Care in a Nursing Home: supposedly one to one support to meet his needs. He is well cared for and it is clear there is lots of TLC on offer for ‘Our Kid’. He lives in a busy place where the demands on carers consistently outstrip their ability to meet the needs of the residents.
Maureen is on what I would call Continuing Home Care. Her visits to Care Homes have not gone well and the care has hardly been person-centred. This is no cricism – how on earth could they get to know her when she is only with them for a short while? How could anyone expect carers to prioritise the occasional visitor when their regulars provide their bread and butter?
The building work to make this Care Home fit for purpose is slowly drawing to a close. Three months is a long time for anyone to have workmen on site. It isn’t surprising that Maureen hasn’t occasionally wanted to run away from being ‘upside down’ as they say around here. There have been times when I have doubted the wisdom of living in turmoil; not knowing how long power or water will be off or scaffolding will be in situ. However, when I remind myself of the hilarity coming from our lounge or the sweetness of the fairy cakes: no gain without pain comes to mind.
What I’m now hoping is that those who live by Mental Capcity Act will review their approach. We will always be renegades – wanting to explore new territory. We will never accept that prescribed Care Pathways are always solutions for those who are living with dementia.
Our journey is just that: trying to fit us into the ways that others want us to go is not going to work and can never be in Maureen’s Best Interest!
I believe I have made some progress to deal with the frustrations I expressed yesterday. Unfortunately, nothing is cut and dried but I’m optimistic that some things will soon shift in our favour. What was heartening yesterday; when I spoke to Kelsang Dorde about my plan to visit the Madhyamaka Centre next week he immediately offered to change his teaching to that lunch-time. A real act of kindness and so typical of this lovely man: a ‘no-brainer’ for him of course!
After a long three-month journey, there is new land ahead:
- I had a positive meeting with our Key Worker yesterday morning.
- My Admiral Nurse will visit us tomorrow.
- I have a seven-hour break on Thursday.
- There will be regular seven-hour breaks on Wednesday’s, from next week
- I have signed up for Monday’s Teepa Snow Webinar on how to solve bathing problems.
- Our new shower room, part of our extension, will be plumbed in on Friday.
- Maureen and I slept together last night for over eight hours.
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!
There certainly is New Land Ahead: watch this space!
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!