Maureen had a lovely time yesterday being Nana to her grandson. She was in her element as she talked and walked with Jack. We often wish we lived nearer to our respective children; sometimes regretting our decision to move to Cleethorpes. All of our immediate families are over two hours drive away and their busy lives mean that we don’t see them that often.
When Maureen is ‘wanting to go home’, she often says she want to be with her family. She also says she misses all of the friends who live ‘back home’. Unfortunately, both of us have lost touch with many of our friends and work colleagues from our days in Coventry. In addition, several of Maureen’s elderly relatives who lived in this area have passed away in the last few years. Therefore, it is quite understandable that feelings of loneliness often dominate Maureen’s thinking.
There is no simple solution to Maureen’s loneliness. Moving closer to family would not be a sensible option, as familiar surroundings are vital at this stage of her dementia. We would also miss out on the quality support available in this area. What I need to do is ensure that we continue to have a steady stream of visitors to address Maureen’s loneliness.
Last night I made contact with Ian Maureen’s eldest son and suggested he brings one of his children with him on his next visit. This morning I have reminded Maureen of the fun she had yesterday with Jack and suggested that we invite grandchildren to help her decorate the Christmas tree once again. I’m hoping by constantly reminding her how much our grandchildren love visiting Cleethorpes it will bring back happy memories from the past.
Maureen has been struggling to work out who I am this morning: she has been telling me how strange it is that ‘Paul’ also likes herbal tea, along with constant references to ‘granddad’! Recognition may return following Chloe’s arrival: when I will go out as the fellow who provides breakfast and return a couple of hours later as the husband who cooks such wonderful lunches.
It was fortunate that I kept the lounge curtains open last night, as I managed to see an elderly lady walking tentatively down the road. When I opened our front door I saw it was Pat, who told me she was ‘on her way home as there were footballers in that house’. I encouraged her to come across the road and have a chat with Maureen. I thought two would be company and with my understanding of dementia I’d be fine: nothing could have been further from the truth.
Usually, Maureen is pleased to see Pat and they chat together quite happily. I edged Maureen into the kitchen to explain that I needed to summon help but she scolded me and eventually retired to bed. Pat looked totally bemused by proceedings but didn’t seem concerned about Maureen’s whereabouts. Once she was settled in the warmth of our lounge I summoned telephone help with calls to HICA (Pat’s Care Agency) and Single Point Of Access.
Bradley Pat’s grandson arrived after half an hour; thanked me for my help and took Pat back to her bungalow. I had tried to chat to Pat whilst we sat and waited for Bradley but could make little sense of her responses. In fact, I had no idea what she was talking about for most of the time. It is possible that I’d forgotten the basics of how to communicate with someone with dementia; thinking that the lingo that I use with Maureen would be the ticket. If only I’d recalled the tips above from Alzheimer’s Care Resource Center things might have been different.
My experience last night reminded me of the saying that: ‘ when you have met one person with dementia: you’ve met one person with dementia.’ It may also be helpful to add that: ‘two people with dementia are not always company.’
How does rejecting this claim fit in with preserving independence? I understand my brother’s PIP is under review and his Alzheimer’s is so far advanced that he is barely able to walk around his Nursing Home: he can do nothing else for himself. This is another example of ‘dementiasm’: discrimination against those with the condition.
Ok, so now you can smile, now you can place a tick against another statistic you’ve won, after all we are just a number to you – a number to win or lose.
But what effect on the real person behind the statistic – what price do you place on people’s lives?
I consider myself to be a strong person and you crushed me for a while, so well done, you achieved your outcome. I won’t appeal as I couldn’t face that whole process again. My life is difficult enough without this on going battle. So, much to the disappointment of many, I wave the white flag to bring an end to this unnecessary stress to me and my daughters – oh, yes…..had you forgotten that your actions affect far more than the claimant? It impacts on the lives of those around them as…
I was running out of gas yesterday afternoon as Maureen continued on her mission ‘to go home’. As soon as I arrived back from shopping she was on the case moving our belongings from the house to the car. Nothing seemed to shift her from sorting out what we needed to take with us, and what could be left behind. I tried every trick in the book to distract her but even the prospect of lunch failed: ‘she wasn’t hungry’.
Maureen waited patiently as I ate some soup and was then off again. Fortunately, I knew that if I played for time reinforcements were pending. Marie from the Home Treatment Team had phoned earlier in the day to say that she would be with us around 2 pm. During a break in proceedings, I managed to get a message to Marie about Maureen’s current presentation. When she breezed into our house she had Maureen in the garden within minutes, putting our washing out on the line. I needed a breather after a busy morning so I cycled to a nearby post box to send some mail. Laughter greeted me on my return as Maureen and Marie foraged in our garden. I left them to it and retired to my office in our box room.
Marie stayed with Maureen for over an hour. I popped downstairs occasionally to make the odd intervention or join in with the laughter that was a constant feature of their intercourse. As Marie’s visit drew to a close she mentioned that she would return next week to go out with Maureen for a walk. She also mentioned that it would be helpful if I could find out if our social dancing group was still taking place.
Maureen was very animated following Marie’s visit. She was clearly excited about being in Marie’s company again. In fact, Marie dominated her thinking and conversation until she admitted she needed to rest after such a busy afternoon.
The Home Treatment Team have come to my rescue on many occasions since Maureen’s diagnosis of dementia. I’m reluctant to single anyone out for praise as they are a team of professionals who are highly skilled at crisis intervention. Yesterday Marie, like many of her colleagues, was able to distract and redirect Maureen to good effect. How fortunate we are to have such a skilled team available to us: providing person-centred care to support us staying together in our own home.
As soon as I saw the above slide fromDementia Alliance International I knew it had to be the starting point for this morning’s post. We all need to make a contribution to making the dream become reality: starting in our own homes and joining with others to widen the debate. As the day progressed yesterday I had to take a number of reality checks that I could have done without.
Once again my plans for respite are in tatters. I had overlooked how much notice Care Homes need before they are able to accept residents for respite. As reasonable as this is it will prove problematic as we are both waiting for medical consultations in the next few weeks: Maureen needs a scan and I need substantial dental treatment.
I had a stark reality check when I returned from my dental appointment. As I drew up in the car Maureen was in the process of leaving the house with a handful of mail. The worrying thing is that had I been a little longer I would have had no idea of when she left the house or that she was carrying mail. It is time to reconsider leaving Maureen to her own devices for more than a few minutes.
My ongoing struggle dealing with Maureen’s reality continues. She woke early this morning telling me that she was going to see ‘if she could go home, as she is no longer receiving any treatment’. It will be interesting to see if my continual attempts at redirection can shift her thinking and ‘keep her here a while longer’!
A little later in the morning Maureen was clearly confusing me with her previous husband, as she explained the strict nature of an upbringing I never had. A few minutes ago Maureen was standing by the phone wanting the number for her mother as she is concerned she hasn’t spoken to her for ages. I’m hoping that my line of it being ‘too early holds’, my singing an appropriate song distracted, and encouraging her into making a sandwich redirected her thoughts. Any carer for someone who has dementia has to be eternally grateful for the work of Teepa Snow who has outlined such helpful strategies for supporting someone who has dementia.
My focus on reality this morning reminds me of something I once read in the gents toilet when I was a student at Westhill College: ‘Reality is an illusion caused by lack of alcohol’. I am beginning to wonder if it would help us both if we occasionally took to the booze again?
One of my fellow Bloggers has taught me the importance of Showing Gratitude. Jen does it on most days through her Blogand Facebook page. Her posts are an inspiration showing how to be positive, and grateful, even in the face of adversity. I am very grateful to Jen for teaching me this important lesson.
I now have 48 hours to decide how many nominations to make in the local CCG’s annual Health and Social Care Awards: I’m spoiled for choice – thankfully there are 13 categories. I firmly believe it is important to acknowledge the quality of dementia services available in this area. The excellent support I received yesterday gives a glimpse of what is on offer.
I phoned our Medical Centre before nine, had a response before ten and saw our G P before three. This was a continuation of the excellent support we always receive from all staff at Clee Medical Centre. Dr Munjal addressed my health concerns and made arrangements to continue his thoughtful support of Maureen, who was too cold to accompany me to the appointment.
My scheduled meeting with Mel, my Admiral Nurse, allowed me to explore several matters. Mel’s ongoing message ‘to look after me’ was carefully put, along with an exploration of current issues with Maureen’s presentation.
I received a telephone call in the afternoon from Occupational Therapy who were offering to meet Maureen and suggest activities that might be of interest. Following some discussion about our experiences at Singing For The Brain I suggested that intervention by Support Workers from the local Alzheimer’s Society might be more appropriate. A couple of hours later I managed to speak with Holly one of the Support Workers and she and her colleague will be calling in to meet us next Wednesday.
Following our evening meal and Maureen in good voice to the Sound of Music on the record player, I caught up with my Email. I was pleased to receive a response from Christine, Head of Casework from Focus Adult Social Care, (still on duty after 7 pm) to acknowledge my gratitude for the intervention of her staff on Monday evening.
As the evening progressed I always knew that support was available long into the night. Focus Adult Social Care never shut up shop and all I ever need to do is ring 256256 and advice and support will be at hand. In addition, once the Home Treatment Team sign off at 10 pm I can always get specialist advice from mental health staff on the Konar Suite.
I am very grateful for the range of provision in this area, and the professionalism of staff as they attempt to provide support to those who are dealing with dementia 24/7. It is such a shame that other areas of the country have such limited resources available to support those who are facing a similar journey to ours.
There is no point whatsoever in giving Maureen any bad news: she has enough sadness in her life dealing with dementia. Today is a particularly significant day in both of our lives. It is Esme, my youngest daughter’s 29th birthday. I have already upheld my tradition and sung happy birthday to her in her absence – I do this whenever I remember it is someone’s birthday There is no point in reminding Maureen that Esme wants nothing to do with me at the moment, and wouldn’t appreciate any form of contact. However, when I get a quiet moment I won’t be able to resist listening to ‘Groovy Kind Of Love’ to remind myself of dancing with Esme in my arms when she was a baby:
Today is also the funeral of one of Maureen’s oldest friends. When I received the sad news of Janet’s passing last week I mentioned our circumstances to her son and explained that attending the funeral was not an option. There is no point in taking Maureen to events that would cause confusion, and lead to distress .
Maureen’s youngest son is visiting at the weekend. It is his birthday a few days later. He is a Sunderland supporter, and we managed to snap up an appropriate polo shirt earlier in the year. How fortunate that we will be able to have an early celebration of his birthday without reminding Maureen that she no longer has any concept of time, place or person.
I’m meeting Mel my Admiral Nurse this morning. I need to chat over my responses to Maureen ‘wanting to go home’. I also skimmed an interesting article yesterday that suggested trying to improve short-term memory is futile and focusing on the past might be more productive. Such discussions will be academic unless I schedule regular respite into my schedule. If I don’t look after my own well-being Maureen’s care will be taken out of my hands!
We have another new carer on duty today and I think she is going to be just the ticket. Maureen has just woken from dozing on the sofa and they seem to be hitting it off. That is great news because Jo is going to be our regular Girl Tuesday if things continue to go well. What a relief if we are back to three regular carers and also have Evelyn in reserve to cover in emergencies .
This little number came up at random on YouTube this morning:
Maureen remembered it from yesterday’s early morning session and sang along. I wonder if I could get it into the songbook at Singing For The Brain so that you know who would feel at home at the Memorial Hall in a couple of weeks time.
Looks like I’d better get downstairs pronto: there is a danger that Jo might talk Maureen to death. it must be so difficult for carers to get it right on the first few visits – particularly with protective husbands like me around!
We had a lovely morning yesterday as Chloe (Girl Monday) worked her magic with Maureen as I stayed in the background. My phone call to the Alzheimer’s Society was really productive: confirming that it was the week that ‘Singing For The Brain’ was on, and additional support that they could offer. Maureen seemed really keen to pop into the Memorial Hall to see if singing with other people was to our liking. However, she soon made it clear that she was struggling in new surroundings. At first, she refused to join in with any of the numbers; either making fun of what was going on or ridiculing what was being sung with her body language or adding naughty lines to songs. We took our leave at the interval and then things became really challenging.
At first, she refused to join in with any of the numbers; either making fun of what was going including ridiculing what was being sung with her body language. She also added naughty lines to songs, especially to Love and Marriage – where she made it clear what she thought of such unions. Consequently, we took our leave at the interval, and then things became really challenging.
The vitriol began as soon as we were out of earshot of our fellow singers. It continued for some time, along with confusion about who I was and where we lived. When we arrived home Maureen was reluctant to accompany me into the house, so I made out I was ‘dropping her off’ and returning to my own home. I took my leave and popped next door to chat to neighbours. I returned a short while later to an empty house.
It took me a few minutes to track Maureen down walking on her normal route towards the Country Park. She reluctantly agreed to join me ‘in her car, which I had stolen once again’. When we returned home she refused to get out of the car. Despite my best efforts, she chose to remain in the car and it took two social workers to move her from the car to the house.
Maureen’s story to my ‘rescue rangers’, who had responded promptly to my call for help, was that she was ‘waiting for Paul to come home’. Once in the house tea settled the situation, and Maureen continued to confabulate as she gave our visitors her version of the events of the afternoon. Things went relatively smoothly for the rest of the evening, with Maureen eating a hearty meal and attempting to help tidy up debris the kitchen. She was clearly tired after a busy day without our normal siesta. When she took to the sofa shortly after 7 pm I thought that would be it for the night – but no such luck.
Maureen woke around 8 pm feeling cold and went back to sleep quickly after finding some additional clothing. She was awake again at 1.30 am determined to light up the house as she went on some sort of mission. Her confusion was paramount as I tried to convince her that more sleep for us both would be a good idea. Half an hour later she declined my suggestion of moving upstairs to sleep; making it quite clear that she normally slept on the sofa.
I am tired and disappointed by the events of the last 12 hours or so. I’m drafting this at a ridiculous hour to try to clear my mind as part of my strategy to get more sleep. It seems likely that ‘Rocking The Boat’ has upset the apple cart. However, if I get You Are My Sunshineon YouTube this morning a new day will have begun. If I call up the right numbers I might even get Maureen on the dance floor: providing she knows who I am!
Footnote: I managed to sleep for another couple of hours after drafting the above passages, and returned to the lounge/bedroom after a bathroom visit to hear Maureen singing ‘Good morning, good morning’. It was a relief to hear my ‘Singer Lady’ (as I often call her), in such good voice. It will be interesting to see if she shifts her position on the best place to do our singing in the next couple of weeks. I wouldn’t dare to predict if yesterday was our one and only appearance at ‘Singing For The Brain’. What I am sure about is that I cannot allow the apathy of ‘Prescribed Disengagement’ (Swaffer)to slip into our lives. Therefore, I have to take up the challenge of moving our dancing from the kitchen and lounge back to the Church Hall – watch this space!
The Serenity Prayer above makes me wonder if I can persuade Maureen to try ‘Singing For the Brain’ if it is on today. The other option is to suggest she accompanies me to the swimming baths this afternoon. Both of these activities are an attempt to encourage her to socialise rather than lying on the sofa dwelling on her poor short-term memory.
We are back into the old routine of morning carer sits this week. Unfortunately, there are two new faces on the schedule this week and I want to avoid such changes causing Maureen distress. I will contact our Care Agency this morning to explore the possibilities of using carers that Maureen knows, likes, and provide the stimulation that she needs.
Maureen had a lovely time yesterday being Nana to her grandson. She was in her element as she talked and walked with Jack. We often wish we lived nearer to our respective children; sometimes regretting our decision to move to Cleethorpes. All of our immediate families are over two hours drive away and their busy lives mean that we don’t see them that often.
