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 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.
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:
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
Posted at 2.00 am:
I have just phoned the Konar Suite to speak to a Nurse to check whether my support to Maureen has been appropriate. She was in floods of tears a short while ago because ‘they had found a dead baby’. This was the second time this week that she has been overwhelmed with this thought.
When I returned from shopping on Thursday the carer told me that Maureen had suffered ‘a major stress’. Unaware of Maureen’s personal history she had consoled her by telling her that she had been dreaming. She didn’t know that Maureen’s second born had died at three months when she was twenty-one. I did and reassured her that the baby knew she loved him and she had done everything she could to keep him alive.
Some of my cyber friends have stressed the importance of coaching for Care Partners. How fortunate that I’m able to call on support from the Konar Suite 24/7. This morning’s Nurse shared with me that her mother had to go into Residential Care because she was obsessed with a dead baby being in the house. She had suffered a similar fate to Maureen and the woman at the end of the phone was the solution. Maureen’s son who we met in Coventry on Friday was seen as the solution to her loss and a replacement for a young child who never made it to his first birthday.
If carers are to have any chance of providing appropriate support to Maureen they need to have a potted history of her life. She has had an eventful life and tried to bury some of her bad experiences: as dementia takes its toll they are coming back to haunt her!
Footnote: Now that I’ve received some reassurance and cleared my thinking I hope to get back to sleep: thanks for listening!
I have decided to resume posting at the weekend. On Saturday’s I will post music that has had great resonance for us both during the week. Sunday’s will be Buddhist teaching from YouTube that has helped me to clarify my thinking during the previous seven days.
I am starting with Steel Away as I always play it when we want to remember Maureen’s daughter. She once asked me ‘why was I singing Paddy music?’ The above version is a rare music video and honours our pledge to remember a beautiful woman and never say we have lost her!
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.
I went to bed shortly before 9 pm last night, leaving Maureen fast asleep on the sofa in our lounge. As always, I left the landing light on hoping that it would lead Maureen to the marital bedroom later in the night. My cunning plan worked and a few hours later I heard her coming up the stairs making for the bathroom. Just to be on the safe side, I hastily made for the spare bedroom to try to avoid the issues of a ‘strange man’ in the bed.
I left Maureen to it for a while before attempting to ease her into bed. However, she told me that ‘she would be in trouble with the school if she stayed in the bedroom’. She sat on the bed for a while before going downstairs again. I heard her close the door of the lounge so I decided to leave her to her own devices for a while. An hour or so later I found her curled up on an armchair asleep. When she stirred she told me she had been singing that I was The Wind Beneath Her Wings: then I got a short sharp shock.
Maureen hero was, in fact, her dad. That became clear when she reminisced over my (his) generosity in funding a family holiday to France. She went on to say she hoped I (he) had some photographs of a wonderful camping holiday. Her confusion of people became even more evident when she pondered over whether ‘Paul had been the driver’. Then she decided he couldn’t have been but she was unsure who was!
As I drafted this post, Maureen appeared upstairs again announcing she ‘doesn’t want to go to school today’. Apparently, it is ‘one of those dressing up days’ and she ‘doesn’t want to be involved’.
Whenever Maureen talks to me as if I am her dad I accept her reality. She clearly has very fond memories of a wonderful father. At other times I am supportive when she is sad about the tough life he had coping with epilepsy and trying to make ends meet. Her confusion about time, person, and place means I have to listen very intently throughout the day. to work out who she thinks I am. If I don’t ‘see the light’ and make assumptions about my status I would find myself in real trouble when I try to persuade my wife to join me in bed or even risk asking her to take her pants off!
My ad-hoc induction of a new carer paid off yesterday, as on my return from the Leisure Centre Maureen was keen to introduce me to ‘the new lady’. The new kid on the block had thanked me earlier for giving her a ‘Heads Up’ on Maureen, as on her arrival she knew nothing about us. This was very disappointing as her Agency had agreed on Friday to provide her with a ‘Heads Up’ on Maureen. It seems likely that I will need to be prepared to do the same on Monday when there will be another new lady sitting with Maureen.
One of the things I need to give myself an ongoing Heads Up on is that Maureen’s short-term memory is barely functioning at the moment. The positive conversation about changing clothing that was so was well received in the early hours of Saturday was forgotten and rejected by lunchtime. Our plans to listen to UB40 together suffered a more serious fate.
Maureen was asleep on the sofa as UB40 were about to begin their performance. When I woke her and reminded me of our date she encouraged me to go by myself as she was tired. Taking her advice I drove a short distance to join fans who were happy to sing along on the perimeter of Meridian Point but reluctant to fork out the £35 entrance fee.
When I returned home Maureen was still fast asleep and appeared at our patio doors as I was listening to UB40’s encore from our garden:
I encouraged Maureen to join me in the garden hoping for a dance to remind us of that lovely night over 25 years ago when we saw UB40 together at the NEC. She told me in Anglo Saxon ‘to go away’ as ‘I had not woken her to see the concert and listen to the music’.
The Heads Up on all of this is that Maureen’s short-term memory is not what it was. There would have been no point in telling her that Ali Campbell was no longer with the Band and arguing about whether I had tried to get her to accompany me on a short trip down the road to listen to the concert.
Maureen is in floods of tears as I draw this post to a conclusion because: ‘they have gone out in my car again and not taken me with them’. Dementia has brought out into the open Maureen’s feelings about people taking advantage of her and treated her unfairly. It wouldn’t take anyone who knows her life history very long to work out the probable sources of such feelings.
One of my favourite ways to start the day is listening to the dawn chorus. As I lay relaxing to the early morning calls this morning another sound caught my ear: ‘where’s my mum?’ This was nothing unusual and is a familiar cry from Maureen first thing in the morning.
I’m always ‘winging it’ when I talk to Maureen about her mum as she had died years before we met. Thankfully, I have heard plenty about her from Maureen and her relations. My reassurances that she was in Nottingham were greeted with ‘why has she left me here?’ Then the going got really tough as I risked trying to fill in the gaps in Maureen’s memory; probably overlooking that she was time-travelling back to her childhood.
One of my usual suggestions, when Maureen is missing her blood relatives is a trip to Nottingham. Her response this morning was ‘why don’t they come to see me?’ Fortunately, one of her sons came at the weekend and my reminder provided some comfort. Then the offer of a cup of tea was well received but it went cold as she tried to sort out her thoughts and drifted back to sleep.
Distracting and redirecting Maureen’s thoughts will become a little easier when she looks out of the kitchen window at a JCB and a Dumper Truck, on what was our patio. This may remind her of the impending Day Room. She was rather concerned yesterday about being able to play in the garden whilst building was taking place. However, she suggested she might be allowed to play in the mysterious Jamie’s garden for the next few weeks.
Thankfully, a short while ago I found a way of changing Maureen reality by whistling ‘You Are My Sunshine’. Once I got into full throttle she stirred from her slumbers, gave me a big hug and told me what a good dad I was!