Following a few days of Respite, including a break at the Madhymaka Buddhist Meditation Centre there is only one way to move forward: to never get discouraged as I try to fathom out the best way to support Maureen:
As Kelsang Dorde, my dear friend from Madhymaka, would say: ‘its a no brainer’.
I now have a strategy in mind if Maureen is reluctant to move to Lindsey Hall Nursing Home on Friday. If she is objects to moving there will need to be a Capacity Assessment of her care needs and residence. I would be confident that it will come to the same conclusion as before: that she lacks capacity and has to accompany me.
A number of local people have agreed to assist us with the move. I’m also hoping that some family members will travel to Cleethorpes to visit us in our new abode as soon as they are able.
This morning I hope to be able to spend some time in our room to consider what could be done to make it familiar to Maureen. However, I have to be careful not to make a nuisance of myself with the Home opening its doors to residents for the first time today.
Another troubled night has left me pretty worn out at a time I really need to be on my toes. With 5 days to go there is lots to be done in preparation for our move. This isn’t quite the last throw of the dice but it is certainly an opportunity too good to miss.
I want our transition to Lindsey Hall Nursing Home to be as distress free as possible for Maureen. Therefore the thought of ‘Fail to Plan: Plan to Fail’ is staring at me every time I look in the mirror. Tomorrow I hope to circulate a Discussion Document as ‘Many Hands Make Light Work’. Please feel free to comment on my thinking.
Once again I am grateful to Bill Malley one of my Line Manager’s when I worked for Coventry City Council. His considered approach to managing staff was a refreshing change to the general approach within the Community Education Department. Bill often circulated Discussion Documents to help determine Working Positions.
Next Friday the 23rd of September is the birthday of my son Steven.
It is now the provisional date for us moving into Lindsey Hall Nursing Home.
I am hoping that I will be able to become an Activities Organiser within the Home.
Maureen is always saying I’m too young to retire!
I went to bed last night with a feeling that something positive is on the horizon. The prospect of moving into Lindsey Hall Nursing Home has put a spring into my step. I have to admit with autumn around the corner I was becoming concerned about how we would cope when it was too cold to go outside.
One thing I have learned in life is not to count your chickens before they are hatched. So as the arrangements for moving into our new home are processed it has to be business as usual. There are so many what ifs at the moment that I have to stay calm and carry on as normal.
Chloe will be here at 10 am for a carer sit with Maureen. I need to do the weekly shop to make sure we have provisions for the coming week. However as I go about today’s business there are more reasons than ever to ‘Put On A Happy Face’.
I hope Amazing Susan will forgive the title of this post but some excellent news at last.
Within a month I expect we will be in Lindsey Hall Nursing Home. I have booked a double room in this fabulous place and am really excited about the prospect of our new lives.
As with anything there is a lot of water to go under the bridge on this journey but you can be sure I will keep blogging as things move forward.
I’m often told ‘you’re doing a good job’ as a Care Partner. It is always nice to receive praise from other people but my professional background requires a little more than that.
I have no problem with my role as Maureen’s Care Partner being seen as a job. It’s a straightforward way in which to explore my role. Therefore I need a Job Description that defines my role and determines my duties. I also need a mechanism for Performance Appraisal to help determine if I am actually ‘doing a good job’. Perhaps, it is also time to put the performance of others under the spotlight to see if they are doing a good job in supporting us both.
I have always found the Local Authority here accessible: they welcome feedback. Any time I have requested to meet Senior Officers of NELC they have found time within their busy schedules to hear me out. My faltering presentations, where I have often outlined shortcomings in our experiences of their services, have always been received professionally and prompt action has always been taken to improve matters. I have every confidence that yesterday’s meeting will lead to further improvements in the provision of services for families where dementia is a factor.
Yesterday I outlined the buck passing that had gone on about Maureen’s dreadful experiences in Ladysmith Road Care Home. The points I have made will be addressed by the appropriate Officer and I am confident that a review will take place of the future use of this facility. Although I’m well aware that Austerity Measures have led to the closure of provision that may well have been more appropriate to Maureen’s needs. As always when I have raised matters communication will continue and I will be kept informed of the outcome of my concerns.
Lisa Hilder, the Assistant Director for Strategic Planning, thoughtfully outlined some new and forthcoming provision that the CCG are supporting. Their use of Drama to support Reminiscent Therapy seems interesting and details will be forwarded. I was also delighted to hear that an initiative to address Sleeping Disorders is in the pipeline. Sally an Engagement Officer who was also at the meeting pointed out that the CCG’s Portal could always be used to reflect our experiences of Services.
It is always a dilemma to know what to do when you are at the receiving end of poor services. The shop steward within me is always tempted to ‘take them on’; more recently I have tempered this combative nature of mine with complimenting when services are good.
My blog will continue to give an honest account of how things are for us. My dear old dad used to advise his children to ‘tell the truth and shame the Devil’: he was still writing beautifully hand-written letters complaining about all sorts of things in his 90’s!
Maureen is very fond of the above number by Emmylou Harris. It is one of the many songs she has learned in the last few months as we have used YouTube to liven up our days. The song may well be a subtle reminder to us both of something we need to focus on as we travel on this unforgiving journey.
We have decided to cancel the Carer Sit today and have a day to ourselves. Although we are very grateful for the support we receive from carers we want to retain the independence that we have always thrived on. I also need to avoid seeing Carer Sits as an opportunity to run off and do my own thing.
There are a couple of attractive possibilities this morning to revive our togetherness. If the tide is in – always a problem when you live on an estuary – we could have a lovely walk on the beach. The wet weather alternative, which now seems more likely, is a trip into Grimsby as we always enjoy wandering around the Indoor Market and buying good quality fruit and vegetables.
I have an appointment at 2.30 pm with a Consultant about the tear in my rotator cuff. I’m sure Mr Bain will be pleased that Oliver, his physio, has helped me to manage the condition and surgery will not be needed. Maureen may prefer to stay at home while I’m away for an hour or so. She did the same yesterday preferring to sort out the washing while I went to have my hair cut. I’m also managing short evening walks around the block (now up to 5 circuits) while she rest on the sofa.
When I met Gary our social worker yesterday we returned to the delicate balancing act of preserving Maureen’s independence and ensuring her safety. We both recognise that managing risk confronts all Care Partners day after day, and all they can ever do is exercise judgement at any particular moment in time.
The Carer Support Plan is now signed and sealed with 3 hour sits during the week and 2 hour at the weekend. Gary and I both see the Plan as a dynamic document that will facilitate support rather than something that is set in stone. It is surprising how quickly Gary has been able to bring this matter to a positive conclusion: perhaps social workers have taken a time to familiarise themselves with the Care Act. Gary seems to be taking a different position on my monthly Personal Allowance; his predecessor said that was an entitlement he is of the opinion it is a discretionary amount but I get the impression that the agreed purchase of a mobile phone will be honoured.
We have been up since 4 am this morning which is not surprising as both of us had an early night. This followed a couple of siestas yesterday afternoon and evening. It is clear that we are finding this recent warm spell exhausting. We are left wondering how we used to cope with the heat of Corfu in our younger years.
Maureen has been in great form this morning: very eager to help tidying up around the house. She has worked well in the kitchen drying the pots and pans after I washed them. We then made a very early morning call to Tesco where she has been a revelation. I directed her like a traffic policemen as she skilfully handled the shopping trolley around the aisles.
Maureen is now enjoying an early morning rest after a busy start to the day. There is little doubt that she enjoyed the togetherness we both felt as we went about our business this morning, like any other couple who share the domestic duties.
One of the things I need to take account of is how energy sapping our daily business can be for Maureen. It is easier in some ways to take off and do things by myself: it is certainly quicker but it may also be reckless as use it or lose it comes into the reckoning. We cannot afford to take such risks with Maureen’s functional ability or the quality of our relationship. Indeed Maureen’s issue about married couples doing things together is paramount in all of this.
I am meeting Gary my social worker this morning I need to sign my Carers Assessment and chat about how things are going. The way things are going reducing the amount of carer sits may well be a sensible way to go by programming an away day into our weekly schedule. Maureen is keen to visit family in Coventry and I’m keeping the pot boiling on that front with daily anecdotes about Bambi. It is one of those situations where timing is crucial: on a good day with a following wind we will just go with the flow.
