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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As you will see the Bonfire Party on the Konar Suite was a flaming success. The food was exceptional: a real credit to the catering staff.
My reservations about Maureen being assessed on the Konar Suite were ill-conceived. They do not see medication as the only solution to mental illness or radical changes in the presentation of someone with dementia. It is refreshing to see such a compassionate approach to assessment.
Maureen has been traumatised by her experiences of the last seventeen days:
Her current reality would reduce anyone to tears.
She is very frightened.
She is totally bewildered by being detained in an Acute Mental Health Unit.
Her ordeal needs to come to an end sooner rather than later.
I have asked to meet with her Consultant this morning.
Some might fear that staff from NAViGOhave lost the plot: tonight they are holding a Bonfire Party for patients on the Konar Suite – an Acute Mental Health Unit. Little wonder they continue to win national acclaim for their radical approach to mental health.
The ‘Bonfire Lady’ as I have christened the organiser of this initiative will happily pay up on a wager I had with her yesterday. I bet her 10 pence that I could get the Manager of the Big Red Warehouseto donate some sparklers and he did – 5 packets!
Maureen is keen to get home as quickly as possible and my discussions with staff are ongoing on this front. Unfortunately, they are somewhat hidebound by the Mental Capacity Act. However, I know that staff are not just paying lip service to Maureen’s concerns and where there’s a will I’m sure we will find a way
Maureen’s period of assessment has now been completed. Her Consultant has concluded that no medication is needed at the moment and her fluctuating presentation is to be expected. The Best Interest meeting that is scheduled for next Friday will determine her future care and accommodation.
It would be pointless to harp on about the delays and duplication under the Mental Capacity Actthat will delay Maureen’s departure from in the Konar Suite. I made the point yesterday that this is another example of the law becoming an ass.
I could waste a lot of energy attempting to speed up Maureen’s homecoming but it would be exhausting. Following advice from a number of quarters, I am going to use the next ten days or so as a Respite Break. This will set the scene for how I intend to prevent Carer Breakdown in the future.
I have already made it clear to Social Services that I will be taking regular Respite Breaks. From now on my shift pattern will be four weeks on, one week off. With the proviso that two weeks off may be necessary on occasions. I have already discussed the viability of these arrangements with Alderlea Care Home. We have talked about how this might pan out, along with Maureen attending for Day Care on Monday’s.
Sincere thanks to two of my cyber friends: Leah Bisiani
Maureen’s reality was palpable yesterday. Even one of my One Pot Specialsmade little impact on being surrounded by Chinese people who have taken over her life. She can’t understand most of them; as they shout out their instructions to her. None of them are friendly and she doesn’t understand why they don’t go back to their own country to find work.
I decided to flag up Maureen’s reality to a member of staff. This also gave me an opportunity to clarify the nature of today’s meeting and what might lay ahead. When I returned to Maureen she was listening to Cat Woman, as we later christened her, wax lyrical about her pet. This gave me an opportunity for distraction as we both laughed about some people thinking their pets loved them. It also gave me an opportunity to tell Maureen how she is the most important person in my life despite my pleasure from watching wild animals in our garden.
Unfortunately, the wifi signal is poor in Konar. That means we are not able to indulge in one of our daily pleasures. When I got home I put Wille and Keith on YouTube to remind myself how fortunate I am – we still have it all!
With the approval of staff on the Konar Suite, I decided to take ‘Sunday Lunch’ in for Maureen yesterday. The look on her face when she saw sprouts and roast parsnips on her plate was a delight. She thoroughly enjoyed her meal and dipped into the in-house menu for her sweet. It didn’t matter that she wasn’t totally sure who I was because I had served up one of her favourite meals.
I’m going to take in another one of Maureen’s favourites today – a One Pot Special. Sprouts will again be in the mix, as that wife of mine loves them. I’m hoping that showing her that someone remembers her preferences will provide reassurance.
Steady progress is being made on the personal care front and Maureen is getting used to changing her clothes. Staff on the Konar Suite have been really successful at easing her out of her old favourites into some newer gear. It is lovely to see her in different outfits and further options will be in her wardrobe today.
I’m hoping that we will have another pre-lunch walk in the garden this morning. Fresh air has always been nectar to Maureen!
I became very concerned when I visited Maureen yesterday morning. It didn’t worry when she told me she was waiting to tell her Aunty that she had dropped her son at school. She was clearly delighted that she had solved the heating problems in the school with a friendly chat with the caretaker. Maureen was time-traveling; talking about something that could have happened over fifty years ago. What concerned me was how she was feeling about being on the Konar Suite.
Maureen told me in a number of ways that she felt she was being treated as if she was stupid. She said she was absolutely fed up of being told what to do: when to change her clothes, how to dress when to take her tablets etc. To an extent, this is a familiar tale that is sometimes repeated when she is at home. However, what concerned me was her feelings that she would have to stay in the hospital forever if she didn’t toe the line.
I thought it was important staff for on Konar to hear her concerns. Their response was impressive with a Nurse hearing her concerns who then asked the Ward Consultant to pop in for a chat. This gave Maureen a chance to vent her concerns and although we heard ‘they are getting to know her’ and ‘nobody likes being in hospital’ I’m optimistic they will take her concerns on board.
Maureen contends that she has done nothing wrong and cannot understand why she is being detained. She accepts that she has problems with recollecting recent events but doesn’t consider she is a danger to the general public. I’m not sure that she has grasped that the Consultant is going to put his Treatment Plan before us on Friday. She just wants to go home and get on with her life. Unfortunately, it is not going to be quite that simple and my understanding is that the process for discharge from Konar to wherever will take some time.
I have decided to stay in Coventry a while longer. I want to see if I can bring about some changes in my mum’s Care Home and my brother’s Nursing Home.
I will pop in to see my mum again this morning. She was rather sleepy when I called in to see her yesterday. When she woke she asked me to give her a kiss and told me she loved me. She also asked me where Maureen was and then she amazed me by asking where Esme was – my youngest daughter.
When I call in this morning we are going dancing. I know if I call up Glen Miller, Frank Sinatra or Nat King Cole on my Lap Top mum’s feet will be tapping. I hope she is able to close her eyes and remember dancing the slow foxtrot with dad: they would have got a Ten from Len!
After lunch, I’m taking the music theme to my brother. He gave me lots of beautiful smiles yesterday as he sat alone in the dining room. I didn’t have my dancing partner with me so we couldn’t show him our attempts to remind him he was one of the best jivers in Coventry. Once I get the right music on this morning I wouldn’t be at all surprised if one of the carers partners him: Len would hold up a Ten if my brother gets out of his chair.
The news from Konar this morning is exceptional. Maureen sang along last night when Alfie Boa was on the TV: they get a Ten from Me. I’ve told them they can’t keep her as I really miss her lovely singing in the morning.
Today’s lesson from Dekyong is: ‘there is no enemy other than our delusions:’
I’m sending myself to Coventry shortly. It will be lovely to be with my mum and brother again and see how things are going in their Care Homes. If things go well I hope to have lunch with my eldest daughter, her husband, and her beautiful daughters. With luck, I might even spend time with my elder sister and her husband in the evening. I think my little sister is in Rome so I’m unlikely to catch up with her today.
The following song is my approach to Maureen being on the Konar Suite:
My Blog yesterday was full of good news as my day had been full of pleasant surprises. Today is a slightly a slightly different story but far from all gloom and doom.
My early morning swim – well mainly walking briskly in the water – went well. The banter in the Health Suite was louder than ever as a regular had returned from Teneriffe in good form.
Maureen was reluctant to leave the residents lounge when I arrived at the Konar Suite. She said there was ‘no point as I could not play the piano’. A member of staff told me she was fixated on waiting for her fish and chips. When I returned a short while afterward she gave me a beautiful smile and was happy to accompany me on a walk around the garden.
As we walked and talked Maureen shared her feelings about being on Konar. She told me that ‘none of the others liked her and were often laughing at her’. She also said that she ‘had been told she would never be allowed to go home’. I tried to reassure her on the popularity stakes and that her stay in hospital was temporary.
Maureen was really pleased that she was getting fresh air on such a beautiful day. We did four circuits of the garden walking at a brisk pace as we admired fruit trees and flowers. Lunch was being served as we entered the dining room and Maureen was happy to be led away for what appeared to be a very small meal.
I was rather concerned about Maureen’s thoughts: particularly that she would never be allowed home. Therefore, I logged my concerns by telephone in the afternoon. I also commented on the size of Maureen’s meal compared to what she eats at home. I was told that she had been served the normal sized portions and there was always the opportunity for seconds.
As it was such a lovely day I decided to take Maureen for a further walk in the afternoon. When I arrived she was sitting in the lounge looking very sad. Her face lit up when she saw me and we returned for a couple more circuits around the garden. As we took drinks in the Quiet Room Maureen told me she didn’t know where she was but suspected she might be in China. She said that she couldn’t understand some of the staff as they had a heavy accent -I have a similar problem!
Maureen’s options for tea were soup or a cheese sandwich. We hedged our bets: my chicken soup was reasonable; Maureen was served two slices of dry bread containing a slice of processed cheese. I ate my soup and a roll, Maureen only ate half of her food.
Maureen closed her eyes as she lay on a sofa and said ‘I don’t think we will come here again’. She explained how difficult she was finding it to make friends in a foreign country. As she drifted off to sleep I held her hand and reassured her that we would be moving on soon.
N.B. In my Partnership Approach with Konar, I have asked if it would help Maureen to settle if I didn’t visit for a period of time. They have encouraged me to keep visiting so she doesn’t feel deserted. As it is the weekend and likely to be quieter than ever I’m going to be the Activities Organiser today – if they let me!
Footnote: This is the second time that Maureen has thought that Grimsby Hospital is in a foreign country. When she had her stroke, three years ago, she was looked after by Spanish nurses. This time there a several staff from the Philippines working on Konar and her Consultant is from Egypt. It isn’t surprising that she doesn’t know where she is or is struggling to understand what some staff is saying to her: far from what the Doctor would order for someone who has problems with cognition!
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!
Dementia: Sharing The Good Times 