I am a retired adult educator. My wife had a stroke in February 2014 and developed mixed dementia. I was her Care Partner until she passed in October 2025. This Blog has told the story of life as a Care Partner and now focuses on the aftermath of dementia.
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My legs felt like jelly this morning and I was rather concerned. At 7 am the Nurse at SPA was able to confirm that the blood tests undertaken on Friday were satisfactory. She also mentioned that it would take a couple more days before I felt the benefit of my belated B12 injection. As this injection was due in April it is possible that muscle weakness is the cause of my problems. How wonderful it would be if the discomfort in my shoulders also went away when the B12 injection kicks in.
Once again I count my blessings we live in an area where SPA is available.
It’s going to be very noisy here this morning as the windows and doors are going into our Sun Room today. We need to be ‘outta’ here by 8 am when 4 workmen will begin proceedings. Our options for an away day are as follows:
A Pamper Day for Maureen at a local Care Home – plan to stay with her.
A day trip to Nottingham.
Out and about in Grimsby and Cleethorpes.
Watching proceedings in the relative quiet of our rear garden.
At 2.45 am, Maureen wants to go home, my status is fluctuating and I have no idea how we will spend the day.
I also have no idea where all those years have gone since I saw The Animals at the Cavern in Margate when I was a slip of a lad.
Oh dear by the sound of it she may have just taken matters into her own hands and legged it: wrong again she’s just come back!
Throughout my contact with members of Our Support Teams yesterday there were three common themes in our exchanges:
For Maureen to remain in her own home.
To focus on the least restrictive option.
That I know my wife best.
When I reflect on the above it doesn’t get much better than that. The local services are under resourced, with no chance of meeting the needs of their client groups but they always do their level best to be person-centered. Never once during a busy day did anyone give me the impression that I was a pain for resisting intervention from professionals who knew best. I continually count my blessing of a decision that we made several years ago to live in North East Lincolnshire!
Maureen was incredible yesterday. She coped well with the presence of a close relative who she clearly didn’t know during the latter stages of his visit. Her singing in the evening exceeded anything I have seen in a while. If there was a local production of South Pacific they would offer her a leading part if she auditioned as well as she performed last night when she sang along to this one:
The joy on her face when she saw that scaffolding was no longer around our house was palpable. She has slept like a ‘good un’ last night delighted that we were together – a blown kiss away in our lounge. The fact that she said ‘good night dad’ was reassuring when you consider the respect she has for her father!
Footnote: Our local Branch of Lloyds Chemist have to take the biscuit – Rich Tea of course – for their support yesterday;
The pharmacist for her general support and advice.
The manager for offering to help me to sort out Maureen’s digital tracker.
A store assistant for helping me to choose Girl Friday’s leaving presents.
All the other staff who always support us whenever we pop in for assistance.
When I spoke to him earlier this morning, my friend* from the Konar Suite suggested I needed a Plan B when I am struggling to contain Maureen in the middle of the night. My ‘Working Position’ over the next 24 hours is listed below:
I have already texted Maureen’s son, who will be here around 11 am, to ask him to stay overnight.
I have also asked Focus Adult Social Care to provide a Night Sitter tonight.
I will seek further coaching on how to deal with Maureen when she doesn’t recognise me and feels I’m keeping her a prisoner.
I will meditate at various intervals during the day to calm my mind.
If Maureen sleeps during the day I will attempt to rest at the same time.
If all goes to plan in the next couple of days the Building Site will become less evident. All scaffolding should come down today. New windows and doors could be in place by the end of the week.
I know I will get lots of advice this morning and if the weather stays fine for the builders we are in with a Sporting Chance to calm things down. In the early hours of this morning, I might have been tempted to reach for that bottle of trazodone if I hadn’t seen what has happened to my dear brother. I firmly believe if he had been handled more thoughtfully he would have still been with us today rather than a shell of the man he used to be!
Footnote: Maureen is now fast asleep; tea, TLC and Youtube helped along with me serenading her with love songs.
My friend from the Konar Suite looked after me when I was a mental health patient several years ago. He calls me Mr Suduko as I spent my time trying to solve number puzzles during my time on the Sapphire Suite when our Mental Health Unit was at Grimsby Hospital. He has likened me to one of the Jedi Knights hence: ‘May The Force Be With You’.
I need to make it clear that my rants about Maureen being prescribed trazodone are in no way a criticism of the individuals concerned. Last week the Specialist Doctor concluded what we already knew: Maureen’s dementia had progressed to severe. In the short time that she had at her disposal, she tried to do something that would calm the situation down and make Maureen’s presentation more manageable. What she didn’t have time to do was assess to what extent Maureen’s environment was making her presentation challenging.
Living on a Building Site is likely to drive anyone bananas. When our children neglect us we all feel aggrieved. If you had dementia into the bargain, your reaction to such dual forces of distress is likely to be magnified and played out publicly.
If you are a Specialist Doctor working predominantly for a Crisis Team you are generally fighting fires. Your brief is to pour water on situations to dampen the fires of distress. Medication is your medium and your prescription pad is always close at hand.
When your Care Partner has skills and substantial experience in behaviour management then it is a different ball game. If he also knows when to call in support then you always have a sporting chance of remaining in your own home without the need for medication that might calm you down but is likely to put you on the slippery path to dependency.
Update: I drafted the above before going to bed last night. Early this morning Maureen woke up and didn’t know where she was or who I was. She spent quite some time trying to smash her way out of the house. I called for help and received telephone assistance from the Konar Suite.
Any lone carer awoken in the early hours would have struggled with what I had to endure this morning. As my friend from the Konar Suite said you need a Plan B. It is fortunate that one of Maureen’s son had arranged to be here this morning. Unless family support is now forthcoming on a regular basis Maureen is likely to be encouraged to take the first step on a ladder that could result in her losing her independence. I fear that trazodone will be on the agenda once again this morning!
We are both locked in here against our will now. Maureen is reassured her son will be here soon to sort our incarceration out. Youtube is working its normal magic and the tea is flowing to ease the vocal chords. There is no need to give Maureen lorazepam as she is now as happily singing along to Rod Stewart. Where on earth was that man in my hour of need?
I hope to provide further updates as the day progresses
Last week I cancelled the carer sit on Thursday so that Girl Friday would be here for six hours the following day. With extra time on my hands, I had to decide between lunch with my Buddhist friends in Pocklington or the company of Girl Friday – my Guru for caring for Maureen. My choice was made easier by the fact that Girl Friday is only with us for another couple of weeks as she is about to go on Maternity Leave
Girl Friday has been my Guru on how to care for Maureen for over three years and I need to spend as much time as I can with her before she moves onto motherhood. Neither of us was surprised that Maureen’s dementia is now regarded as severe but we were both taken aback by the prescription of trazodone. We both know that desertion by her family, and living on a Buiding Site are really getting to Maureen at this moment in time. Medication that has the capacity to sedate her will not increase family contact or speed up the building of our Sun Room. Girl Friday and I know Maureen needs compassion and empathy rather than medication.
I didn’t regret my decision to stay in Cleethorpes on Friday because YouTube meant that one of my Buddhist Guru’s was still close at hand. The following video clip on suffering is particularly helpful to anyone who is dealing with dementia:
I managed to catch up with another one of my Guru’s yesterday; a Support Worker from the Alzheimer’s Society. I knew she was running a Memory Cafe at a local Day Centre and decided to pop in to thank her personally for her support. For administrative reasons, I have been told that I am no longer able to receive support from this individual.
A new Pathway for Carers means that I’m no longer allowed to have a foot in both camps – I can either use Admiral Nursing for support or the Alzheimer’s Society. How ridiculous that as Maureen’s dementia progresses, support that I have found extremely helpful has been withdrawn. This is a battle I could do with winning but I have to focus on more immediate struggles at the moment – the prescription of trazodone. In my view, that is the first step on a very dangerous ladder for Maureen. I have seen how medication prescribed to deal with my brother’s aggression has left him incontinent and just about able to manage a smile.
I have no intention of persuading Maureen to take medication that she doesn’t need and has the potential to harm her. The suggestion that I should give her trazodone covertly is abhorrent. Maureen is an intelligent woman and if she discovers I’m deceiving her in any way our loving relationship would be brought promptly to an end. Hell has no fury like Maureen being deceived: particularly when she had that experience in her first marriage!
Footnote: I have decided to engage directly with another one of my Guru’s this morning: Peter KindermanProfessor of Clinical Psychology at Liverpool University. He leads thisFuture Learn Course:‘Psychology and Mental Health: Beyond Nature and Nurture’ and I have signed up for it a short while ago.
With my initials what else would I call my approach to being Maureen’s Care Partner than The PC Protocol? Over the next few days, I aim to clarify my Protocol and outline its effectiveness in maintaining or even reversing cognitive decline. I fully accept that my evidence will be anecdotal and totally subjective. My methodology will be to relate daily events. My approach will lean heavily on Eric Berne’s Theory of Transactional Analysis: if something doesn’t work try something else.
Several events over the weekend have convinced me that I’m onto something. On occasions, Maureen has astounded me by her approach to situations and her ability to recall. It hasn’t all been plain sailing and there have been times when she has been distressed and I have been tearing my hair out. For example, attempting to assist her when she was wearing four pairs of pants and becoming very uncomfortable – it took 24 hours before she would let me get them off (x3 ). I accept I’m being selective in the events I have chosen to relate over the last 48 hours but here goes:
On Saturday morning Maureen’s performance in Freeman Street Market was heartening. I confused her to start with as I foolishly parked at the front of the market which meant that our entrance was not our normal way in. Once at our favourite stall she was a revelation as she selected our fruit and vegetables. She noticed that new staff were on duty and was relieved when the owner turned up and made a fuss of her. In the afternoon she was keen to have a choc ice and I used her desire to encourage a walk to our local Spa Store, even though we had a box in the fridge.
I deliberately took her on a familiar walk to the Spa Store and reminded her of focal points on our route. She remembered some of the familiar sights and remarked on how well locals were keeping their gardens. Once in Store, she bantered with staff who were stacking shelves or on the tills.
During the evening I had a fascinating time listening to Maureen on the Baby Monitor as she comforted a young boy in our lounge. She was trying to make him some shoes as he was poorly shod. I heard her efforts to comfort him as she encouraged him to sleep. Almost half an hour I found that she had dropped off on the sofa where she slept for the remainder of the night.
On Sunday morning we had our own version of Singing For the Brain. Maureen was in great voice as she sang along with her granddaughter on YouTube, applauding us all after every number. She was very pleased to greet one of our gardeners when her arrived to paint our newly constructed fence. Once he began painting I reminded Maureen of her wisdom in encouraging me to stick with Oak Brown, rather than going for the trendy colours that are all the rage at the moment.
At several times in the day, she related her anxieties about the young boy who had no shoes. I reassured her that his mother was pleased with her intervention the previous day and had the matter in hand. This issue may well be related to her past when a dentist scalded her for bringing her son to his surgery with cardboard to cover the holes in the sole of his shoes.
Maureen has slept well for the last three nights, my sleep pattern has also improved. This may well be because our afternoon siestas are now a fixed feast and paying dividends. I also cancelled carer sits over the weekend because they were with unknown quantities.
I cancelled carer sits over the weekend because they were with unknown quantities. Maureen has really appreciated two days when we have reclaimed our own home from ‘The Girls’ daily invasion into our lives.
During the weekend I have lavished Maureen with praise and TLC; never wasting an opportunity to play music or burst into an appropriate song. This one from Ali gives you a flavour of things:
The P C Protocol is not written in stone it is an organic approach to being a Care Partner. I have never liked the idea of ‘going with the flow’ as that is something I associate with dead fish. I have also made my feelings on Kate Swaffer’s ‘Prescribed Disengagement’clear from Day One.
The icing on the cake yesterday was Maureen’s words as she stumbled into bed beside me late last night. She said she ‘wanted to wash under her arms’ and then added she could probably ‘do with a shower but was frightened of falling in the cubicle’. Then she amazed me once again; remembering that we were short of toilet soap and that she had forgotten to clean her teeth!
There is no treatment for Maureen’s condition – vascular dementia. The medication that she has been prescribed for the last three years has been aimed at preventing a further stroke: lisinopril to control her blood pressure and rivaroxaban to thin her blood.
Last week following an assessment by a Specialist Doctor Maureen was also prescribed trazodone to address raised levels of anxiety and hallucinations. Because she is highly sensitive to any form of medication she was prescribed the lowest possible dose. I have been informed that she would need to be monitored very closely in case she had an adverse reaction to this new medication.
Maureen has been refusing any medication for months – never taking it on a regular basis. Therefore, I have not even offered her any tablets for the last few weeks. In that time her blood pressure has been monitored and been at an acceptable level. It has been a blessing to avoid the daily battle of attempting to persuade her to take tablets.
Following a meeting with Maureen’s GP last week I have agreed to try to get her to take her blood thinner once again. The early signs are positive as she is cooperating at the moment without undue pressure from me. I have agreed to review progress with her GP early next week and to leave a small bottle of trazodone unopened.
In my view, Maureen does not need the latest medication that has been prescribed by the Specialist Doctor. – it is an antidepressant and may well be being prescribed off label! I have checked it out in a number of quarters and I don’t like the sound of it at all – particularly as it is primarily a sedative.
When the SD was here I made it clear what I thought was causing changes in Maureen presentation: her environment -being deserted by her family and living on a Building Site. I have already done something about the former with family visits now scheduled for the next three weeks. The latter will be resolved within five weeks when the Building Site blossoms into a Sun Room.
We know that the drugs don’t work for vascular dementia: we also know that medication cannot resolve loneliness or living on a Building Site!
The other treatment that doesn’t work for Maureen is a time in a Care Home. All Respite Breaks have had a negative impact on her well~being. Therefore, the only Care Home she will stay in from now on is our own home. Any person-centred approach to Maureen’s care would understand that separating her from her husband would make no sense to her and remind her of bad experiences in her previous marriage.
It is fortunate that during my last break I was able to meet with Irving Kirsch and Tom Schuller: two academics who continue to have a significant impact on our lives. If I hadn’t read Irving’s book I would have believed the ‘chemical imbalance myth’ about depression and been on antidepressants for life. Without Tom’s support during my time at Warwick University, I wouldn’t have a Masters Degree in Lifelong Learning and the Management of Change and developed skills that are vital in my role as a Care Partner.
A few weeks ago Maureen paid a high price for my trip to London to meet Irving and Tom – 5 days and nights in a Care Home – but she would have wanted me to thank two men who continue to have such a positive impact on our lives!
(I’m seated in the photo above: with Tom in the middle, and Irving on the right.)
As there have been some really positive developments over the weekend I’m posting what is a sort of Working Position on ThePC Protocol for Dementia this evening. This is not an approach written in stone apart from the two basic principles that I have outlined above: NO MORE DRUGS or CARE HOMES!
My Monday morning post will outline what has been a really positive weekend!
We had a beautiful day yesterday. The sun shone for most of the day as we enjoyed the kind folk of Cleethorpes at their best. Some of them we had never met before, others often support us on this journey:
A new face at the paper shop was lovely with Maureen when we collected an early morning loaf.
Two locals in the above shop chatted away to Maureen as we stood waiting to be served.
The ‘Blanket Lady’ a homeless woman who lives on the pavement in the centre of the town had a lovely conversation with Maureen as she continued asking passers by if they had any spare change.
The shop assistants in the Card Factory bantered with Maureen as we waited for our next helium filled balloon* to be blown up.
A young lad and his baby sister entertained Maureen for a few minutes as their mum made a mobile phone call.
* The choice of the balloon was a ‘no-brainer’ because Maureen had been distressed by an afternoon phone call from her son. She said ‘ he didn’t even ask me how I was and I’ve been lying in bed ill for months’. Such calls feed her anxiety that no-one really cares about her. When we got home and I let the balloon loose in our lounge she struggled to read the words and then she said ‘I love you too.’
We finished our time in the town centre with a reminiscence walk as I guided Maureen around the area where she used to live as a young child. As we walked the route she would have taken to get to Primary school, she amazed me with her recollection of events over 70 years ago. She recalled where her mum used to get baby milk and pay her mortgage. As we bought a few things for our evening meal she remembered the first time she had ever seen tinned food. Reminiscence therapy is always regarded as ‘Good Medicine’ for those with dementia and Maureen loved recalling her childhood. In the evening, she made it perfectly clear what she regarded as ‘Bad Medicine’.
Following our evening meal my efforts to get Maureen to take her blood thinner (rivaroxaban) fell on the stony ground once again. I tried to prompt her in several ways to no avail. Eventually, I left her to it and half an hour later found the little red tablet discarded on the floor.
I count my blessings for such a beautiful day and I have no I have no idea what today will bring. The only fixed feast is to continue to offer Maureen her medication and note the outcome. Some would suggest she lacks insight into her need to take prescribed medication but if they were here 24/7 they could not arrive at such a conclusion: she is asserting her right to say NO!
A final word from one of our heroes on this theme:
Love and peace for the weekend; sisters, warriors, and brothers.
Footnote: I have decided to close my Good Music page. YouTube and playing records are such an integral part of how I support Maureen that I will share tunes that have had resonance on this page from now on.
Dementia: Sharing The Good Times 