I often say to Maureen whenever you need something just call my name.: yell out ‘Paul’ at the top of your voice. This song by Christie Hennessy puts my sentiments into context far better than ever I could:
Tag Archives: Better Practise
Dementia: Keep Calm and Stay Focused
It is very important that I keep calm and stay focused in the coming week. I am hoping that I will be able to make progress on most of the following:
- Lasting Power of Attorney
- Presenting concerns to the local Clinical Commissioning Group
- Developing a positive relationship with new Care Agency
- Carers’ Assessment
- Additional carers sits
- Planning substantial respite
- Additional activities to provide cognitive stimulation for Maureen
- Going swimming together
- Arrangementys to keep Maureen safe
When I look back at the list it seems as if I am in for a busy week. Nothing unusual there, as a Care Partner I am always on duty 24/7 with never a dull moment. It’s certainly makes for an interesting life: that old Chinese Curse personified.
Dementia: Wonder Woman
There are times when I would happily label Maureen: ‘Wonder Woman’. He ability to continue to thrive on adversity is refreshing. When I see her in action it is easy to forget: stroke led to a 50% loss of peripheral vision, and a dia
gnosis of dementia.
Only this morning I was wondering what to try next on our journey with dementia. On most days I try to introduce something that helps to rebuild confidence and provides a break from the kitchen sink. I think it is possible Maureen gave me a sign this morning. As you will see from the photo opposite she has hung up her swimming costume in her wardrobe. Only this morning she has moved her costume from an adjoining chest of drawers. I would speculate that this move has not been made by chance.
Cleethorpes Leisure Centre has recently been refurbished. We have popped in a couple of times since Maureen’s stroke, but I don’t think she has had a dip in the pool for quite some time. The refurbishment means we can change in a family room and walk into the water holding hands. The children are back at school now and the pool will be virtually empty at certain times of the day.
I can anticipate the sheer joy on Maureen’s face when she is back in the pool again. I bet she can still swim faster than me!
Dementia: We Need A Holiday
We would both benefit from a Winter Sun holiday. This would be another step tow
ards normality, as we continue our journey with dementia.
Christmas is always a tricky time when divorcees get together. It is difficult for the extended families to know who to invite, or visit, over the festive period. We have often solved such difficulties by flying off to Portugal, to spend a couple of weeks lapping up the warmth, and being waited upon. I am just wondering if we could make it again this year?
We haven’t had a holiday together since Maureen’s stroke. It was not safe for Maureen to make the trip we had booked in 2014, because it was so close to her stroke. So Maureen’s family were kind enough to come to my rescue, so I could accompany two of my daughter’s to our favourite haunt – Albufeira. I am wondering if the two of us could make it this time round?
Maureen has given mixed responses to any suggestions of flying off abroad. She often talks of not liking flying, and delays at airports. Then she will talk positively about the benefits of a hotel in the sun. I think it is time to try to ‘push the boat out’ on this one.
Passport renewal is a sensible staring point. This will open the debate and deal with one of the practicalities. I need to accept her anxieties about flying off, and the tensions associated with preparation for a holiday. However, on these dark mornings with the nights drawing in; we need to focus on something positive to mitigate the impending doom and gloom. I’m sure you will be hearing more on this ………
Dementia: The Importance of Staying Positive
If I don’t live by the graphic on the right things are going to get really difficult here. My appointment with the social worker, to review my Carers’ Assessment, has been postponed yet again. Therefore, we remain saddled with a Care Package that is totally unrelated to Maureen’s presentation.
It is rather difficult to progress anything without the social worker’s blessing. So all I can do at the moment is tread water and try to cope.
What I have to ensure is that my tiredness, and irritation, is not picked up by Maureen. It is time to keep a smile on my face and tough it out over the weekend. I will need to focus on working with staff at the new Care Agency on Monday when they take over the reigns.
We are fortunate that Maureen’s youngest son will be here on Sunday. He has an incisive mind, and a balanced approach to things. He couldn’t be coming at a better time. We need wise counsel before we take our next next steps on our journey with dementia.
Dementia: Sailing Lifts Mood
Yesterday evening Maureen woke up from dozing, on the sofa, in a very distressed state. Finding no-one else in sight she thought she was alone and didn’t know where she was. I heard her crying; called her and she eventaully joined me sitting at my computer, in our box room. There is nothing new in this event; since stroke, and the onset of dementia, it takes Maureen a while to come round in the ‘morning’. Faced with her presentation I decided on a simple route to help her out of her distessed state: ‘Sailing’.
Once we went downstairs I immediately put ‘Rod the Mod’ on the Cd Player. We have always been fans of the ‘Lad’ and Maureen often sings along to his music. I think I also recalled that the next two tracks were: ‘I Don’t Want To Talk About It’ and ‘Have I Told You Lately That I Love You’. I thought such meaningful music would help to ground my dear wife. Then I thought of an addition to my ‘cunning plan’.
I knew that Maureen would probably venture outside. One of the first things she does every ‘morning’ is to open the back door and walk around the garden. True to form; she put on her shoes and ventured outside. Just by chance I found her something useful to do – fill up the bird bath with water. We then both made it a more pleasant experience for our feathered friends by removing some of the sludge, before Maureen topped up with clean water.
Music is a key tool for lifting mood in this ‘Care Home’. It isn’t very often that it doesn’t do the trick. Later in the evening with YouTube on the ‘girl’ was singing her heart out to Christie Hennessy. So plain Sailing yesterday evening for us; then it got even better.
Marie our daughter in law received our phone call and confirmed that it is our Wedding Anniversary today! I don’t know why but both of us always struggle to remember the exact date. I think it is possible that it is because Maureen made me serve a seven year apprenticeship before she agreed to become my wife!
Three pieces of music to help lift your mood:
Remember Me by Christie Hennessy
I know this is an early morning post but it is our Wedding Anniversary you know!
Dementia: Clear and Present Danger
Some additional measures are now needed to keep Maureen safe. In the last two days I have managed to track her down on walkabout being shepherded back home by two kindly folk. On Tuesday she was walking arm in arm with an elderly man; 
oblivious to any concern about her lengthy absence. Yesterday she was in the company of a middle-aged woman who guiding her back home. It is fortunate that she met such friendly dog walkers on her travels.
It appears that Maureen has increased the range of her walkabout. She is now venturing as far as the Country Park before she seeks assistance to find her way home. Her current walkabout are now a cause of real concern for your truly. It is no longer simple to track her down, as she increases the range of her tours of the local area. In the past I have given her a measure of freedom before tracking her down. The time has now arrived to review my approach to her walkabout to ensure her personal safety.
Maureen is very vocal about her independence and has indicated that restriction will lead to dire consequences. She feels she is safe to be both left to her own devices in the house, or on walkabout. In fact, she has made it clear that if my concern about her independence continues she would elect to end our relationship. I fully recognise that this is dementia robbing Maureen of any realisation of the risks involved. Unfortunately, we are no longer in a position to hold rational conversations with my dear wife.
Preserving Maureen’s independence and safety are of paramount importance, as we continue our journey with dementia. Such matters are of immediate importance and have to be resolved before we consider the small issue of my Carer’s Assessment. It is fortunate I am meeting with our social worker on Friday morning.
Dementia: The Way Ahead
The next few 
days are important in our journey with dementia. The appointment with our social worker on Friday morning will be the start of my Carers’ Assessment. I need to take advice on how to develop a life alongside being a Care Partner. There are lots of aspects our lives that have fallen by the wayside, as we have grappled with the consequences of Maureen’s stroke and onset of dementia.
The following list outlines my current aspirations:
- Visit family and friends on a regular basis
- Plan holidays
- Resume meditation classes
- Resume tai chi classes
- Return to ballroom dancing classes
- Return to some form of painting and drawing
- Attend some form of educational/interest group/class
- Read more books and other publications
- Improve my DIY skills
- Resume involvement in the Labour Party
- Continue with my attempts to improve the diagnosis and treatment of dementia
I am sure I may well revise this list in the next couple of days. One thing for sure Cleethorpes is a lovely place to live, as you can see from my photo above of the sun rising over the Humber.
Dementia: Time To Become A Whistleblower
The time has arrived to become a whistleblower on the approach to dementia that we have experienced. It is bad enough for diagnosis to be so long winded. Then Maureen has been discharged from the Memory Service as her condition is untreatable. Little point in dwelling over the disagreement over diagnosis: I have already referred to that in earlier blogs. Where the whistle has to be blown is on what has followed; particularly from social services.
This is far from a personal attack on an individual: I have already blogged on Mission Impossible. This is me being open about the Exocet I now need to fire to attempt to bring some sanity into the situation here.
It appears that there might well be both cultural, and systemic, problems within social services. There may also be questions about capacity and resources. Nevertheless, from what we have seen there is little sense in what is going on at the moment. You just wonder with economic austerity being predominant in this country why we continue to spend public money on the type of charade that I am about to outline.
I had alerted social services to the fact that my mission is now becoming impossible. Maureen’s presentation has changed and is putting her welfare, and my health, at risk. More support is needed from paid carers. The response from social services is bewildering.
Our social worker called last week: she stayed for a couple of hours chatting to Maureen. Why two hours you might ask? After all the client has dementia and a very limited concentration span. The outcome of her vist: zilch; absolutely nothing in terms of additional support.
So a social worker spends a couple of hours on the sofa and we are left to get on with it. Questions about the purpose of her visit have to be raised. Maureen’s presentation remains the same. In fact, the immediate impact of the visit was to increase her distress and fears.
I have appointments arranged to meet Senior Officers from the Clinical Commissioning Group and social services in the coming weeks. I intend to question whether their services are be fit for purpose. I now hope to bring those meetings forward. I just wonder where a ‘duty of care’ under the new Care Act figures in all of this?
