I do not feel well enough to look after Maureen as I have caught the same infection that is impacting upon her presentation.
My contact with Single Point of Access means that Rapid Response will call to assess our needs as soon as they are available.
I contacted Single Point of Access -Focus at 2.30 am to request a Best Interest Decision this morning on her future care and accommodation needs .
Maureen has kept me awake for most of the night because she has an infection.
I will seek an appointment with her GP this morning to try to prevent a heavy cold becoming something more serious.
A home visit may well be necessary and will be available if needed: we can always depend on Clee Medical Centre.
Our social worker is not working today so I have requested the Duty Manager to facilitate the Best Interest Decision.
To put it mildly, I am rather tired: no Care Partner can sustain being on duty 24/7.
Footnote: Posted a little earlier this morning in a quiet moment as Maureen sleeps.
When I called in to see my brother at his Nursing Home at 10.30 am yesterday I was told he was tired and had gone back to bed. So I moved on to visit my mum in her Residential Home. As always she asked me if I’d come to take her out but when I returned from fetching her coat she was fast asleep in the chair. I stayed with her for a while before heading off to see my brother’s wife. This is when I was reminded how respite had led to disaster for John and Jean.
Almost 5 years ago when Jean was on her knees she booked John in for a week’s respite. Towards the end of his stay he had become aggressive with a staff member; police were called John was taken away and eventually Sectioned under the Mental Health Act.
John was detained in the local Mental Health Unit for 6 months before any Nursing Home were prepared to take him. A couple of months ago he was evicted from Norton Grange Nursing Home because his wife complained they were not dealing with his oral thrush.
I was shocked when I saw John yesterday afternoon. He is a shadow of the handsome fun loving man I have always been proud to call my big brother.
Respite for John was a disaster. He has never been a violent but man we will only ever have the Respite Centre’s version of events: that is why Jayne Connery is right: CCTV in Dementia Care Homes must become mandatory.
I have decided to stay in Coventry another night and hope to take my mum out today.
I woke at one this morning after going to bed before nine.
On Remembrance Sunday I thought of my dear dad, sadly no longer with us.
Finbar’s words express far better than I could what a wonderful father he was:
As a Tail Gunner with a Lancaster crew, he flew over 40 missions. When I thought about what ‘ops’ I would be on today my mission became clear: to travel to Coventry to hold my mum and my brother’s hand. Mum has vascular dementia, John has Alzheimer’s. It is possible that neither of them will recognise me. However, I know I’ll remember them and it’s what dad would have wanted.
I’ll be setting off shortly and may post more when I arrive at my hotel in Coventry.
The last time Maureen was in Ashgrove Care Home she did a runner. When the fire alarm went off she hopped it and was reported to police looking at flowers in a local resident’s garden. I received a phone call within minutes of this happening. I was soon informed when she was safely back behind lock and key. This is rather different to how Ladysmith Road deal with significant incidents.
Although you don’t expect to hear the that your wife has escaped from a secure unit it didn’t worry me too much. A few weeks earlier she had walked out of Royal Court Care Home: she picked the lock on a patio gate.
Maureen has hopped it several times from under my watchful eye. However, she doesn’t wander; she either goes looking for me when she has forgotten where I am or takes off if I have upset her.
From what I have seen Ashgrove are as good as it gets for a Care Home. In Special Measures a short while ago they now provide sound person-centred care. There is no doubt that the newly built extension would get a higher star rating once it is opened but it is exclusively for residents with dementia. At this point in time, Maureen is better off in a Care Home environment.
Yesterday I managed to have a helpful chat with Karen from the Home Treatment Team. We talked far and wide about how things had been here and the possible ways forward. Karen encouraged me to focus on the best interest of Maureen and me as a couple.
It is reassuring to know Maureen in safe hands with people I trust. This gives me an opportunity to explore the best way forward for the next stage of our journey: more of the same is no longer an option!
Dementia advocate
A humanitarian, advocate and activist for people with dementia, Kate Swaffer was diagnosed with the disease in 2008, just before her 50th birthday. Refusing to be defeated by the diagnosis, Kate has helped redefine the way the world views dementia and has driven improvements to services and outcomes for the 354,000 Australians currently diagnosed. Since then, Kate has completed three degrees and is currently undertaking her PhD. As Chair, CEO and Co-founder of Dementia Alliance International, Kate is a voice for the 47.5 million people worldwide living with dementia. She sits on numerous committees and councils, and was the first person with dementia to be a keynote speaker at a World Health Organisation conference. An accomplished author, Kate has written a number of books and articles, including What the hell happened to my brain: Living beyond dementia. By transforming tragedy into triumph, Kate is changing society for the better and showing others how to lead remarkable lives despite the obstacles.
One of my fellow Bloggers has taught me the importance of Showing Gratitude. Jen does it on most days through her Blog and 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.
We were very fortunate yesterday to benefit find three missing links in our chain of support. Maureen’s presentation was stretching me to the limit in the morning and once again our Home Treatment Team came to my rescue. Marie arrived less than an hour after my request for support and was just what the Care Partner ordered. Within minutes of her arrival, she gave Maureen the psychological support that she has been craving for quite some time.
My sister and her husband arrived as Marie was leaving. I saw her out to her car, thanked her for her timely intervention and hopefully set up further visits.
Jill and Rob carried on Marie’s good work. During the four hours that they were here, their thoughtful behaviour helped Maureen to enjoy a lovely afternoon. She walked and talked arm in arm with Jill for over a mile following a lovely lunch brought all the way from Coventry.
I have encouraged Jill and Rob to leave us to it today. Maureen will be tired after such an eventful Saturday and will probably rest for most of today. However, yesterday fills me with optimism that we have stumbled across just what we need: ongoing support from Marie, and visitors who are dementia friendly, come in small numbers, and feed us into the bargain!
We both slept well last night; sharing the same bed for most of the time. Whenever Maureen woke up distressed by her thoughts I was able to offer immediate comfort and we both slipped back into sleep. As always, I couldn’t offer any meaningful solution to Maureen ‘wanting her mum’ but holding her hand and saying positive things about someone I had never met seemed to do the trick. What a difference it would make to our lives if we could get such good rest every night: that would be a find worth its weight in gold!
Once again I want to put on record the excellent support we receive from Focus Adult Social Work. In the last few months, Gary our social worker has worked tirelessly to update our Support Plans to reflect our current situation. That work has now been completed along with sorting out the annual direct payment that is generously provided in this area.
Gary and I will be meeting with our Care Agencies early next month to ensure that their Care Plans have been updated. This will also be an opportunity to discuss the need for continuity of carers and appropriate recording of Maureen’s presentation.
We are also hoping that our efforts to get Maureen psychological support will come to fruition at a meeting that is taking place on Friday. The Home Treatment Team always come to our aid in a crisis but we are requesting ongoing support from a named professional.
Our day went well yesterday with Dianne, refreshed from her holiday in Portugal, putting in a great shift. Maureen was a revelation in her company responding well to Dianne’s interventions. I was happy to leave them and pop out to the shops: such a relief that she was in safe hands after an unfortunate experience on Tuesday.
Clarice Maureen’s aunt visited in the afternoon. There is always laughter in the house when those two get together as they reminisce about the good old days. Yesterday was no exception and we took up Clarice’s offer of a cup of tea when we returned her home and the girls ‘continued to yarn’ .
After tea, I got out a pack of cards and played Patience as Maureen sat alongside me on the sofa. She watched intensely as I failed to complete the game after several attempts. I’m tempted to build card playing into our evening routine and persuade Maureen into the game – she has often told me that she was a great fan of Clock Patience when she was younger.
My lesson from yesterday is to stick with my patience and continue to play my cards right.
We often start the day with YouTube Maureen loves singing along to the songs her dad used to sing to her when she was a child. This one is a particular favourite and a lovely way to start the day:
In the evenings I often become our resident D J and put some vinyl on the deck. Last night Maureen was in exceptional form and took to the floor as you will see .
With dementia you can never predict what is going to happen next. This morning Maureen has just summoned me because she is frightened because there is a large dog in the lounge and she is frightened by the beast. She often reminds me that she witnessed one draw blood from your mother’s leg when she was a child.
I understand that those deeply held emotional memories are the last to fade when you have dementia. Therefore, it isn’t surprising that Maureen remembers me being ‘horrible to her for putting her in a Care Home last week’. This could well be one of those emotional memories that will not fade as quickly as some would suggest!
