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.
Kate Swaffer makes the point that we need to focus on dementia of all types and the importance of supporting those that have it, rather than concentrating on the latest hope about cures.
For my continuing series of World Alzheimer’s Month / Dementia Awareness Month 2016 #WAM2016 #DAM2016 blogs, the post today is about the impact of hearing and reading about possible cures, and failed research.
Members of Dementia Alliance International, and the much wider community of people with dementia and our families, are constantly being bombarded with this or that article or media release about an impending “cure or Alzheimer’s”.
Whilst it is good to read and hear about research, there is also a very negative impact of this constant stream of FALSE HOPE.
Considering many of us do not have dementia of the Alzheimer’s type, this is not only discouraging, but I wonder, will someone ever start to research our type of dementia more.
And we all know how much money has been spent on other terminal diseases and illness such as cancer, motor neurone disease and so on, and we also all…
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As Kate Swaffer says in today’s post: : ‘Together, we can and will change the world for people with dementia’.
In my series for Dementia Awareness Month 2016 #DAM2016 #WAM2016 of blogs, today again I continue to remember family and friends who are no longer with us, but who also were diagnosed with any type of a diagnosis of dementia.
Today I remember the late Richard Taylor Ph.D.
A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles
Christopher Reeve
Richard Taylor continues to be one of my heroes.
I wrote this Haiku version of an Elegy about Richard which I read out at our online remembrance last year. So often, less is more.
Richard
Kind, intelligent
Passionate, real and feisty
Deepest heart and soul
In his final newsletter, he started with, “Hello, again. Still Richard here, still living with more and more symptoms of dementia I can’t seem to work around/overcome.”
Richard always began his videos and presentations with: “Hello. My name is…
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It took over an hour for the three of us to transform out lounge/bedroom yesterday morning. It now seems far more spacious, with a dance floor emerging in exactly the right spot. Maureen and I were too tired last night but I hoping that we will soon be ‘tripping the light fantastic’ in our new Dance Studio. I have already dusted down the DVD’s to remind us of the steps in a first move to returning to our Social Dancing Group.
The other good news from yesterday is that I returned from an evening trip to Tesco with some remedies for Maureen’s sore mouth and tongue. We now have a mouthwash that compliments the Gengigel gel recommended by our dentist during a previous outbreak. I am hoping that a softer toothbrush and Corsodyl toothpaste will help bring Maureen some relief and possible cure from what threatens to become a chronic condition.
We have cancelled today’s Carer Sit as we are planning a trip to Louth a small Market Town a short distance away. When we have had enough of wandering around the shops we can visit nearby Hubbard Hills for a walk in beautiful surroundings. If the sun comes out we will be able to watch young children enjoying themselves in a stream that flows through the area.
I realise that it could be one of those days when the best laid plans fall by the wayside. Maureen has already been stressing that she wants to ‘go home’ but for once has said ‘there is nowhere to go’: so your guess is as good as mine as to where we will be by noon!
Some important statistics from Kate Swaffer to open World Alzheimer’s Month.
Well, technically it is Day 2 of #DAM2016 in Australia, but as it is before midnight on September 1 in the UK, I could also say it is Day 1 of #WAM2016! I have not been here at all lately, in part due to health issues but also trying almost desperately to keep up with my studies. But actually I really miss blogging more regularly, and feel I need to make an effort to at least be a bit more active for September. My sleep patterns are, like many with dementia also tell me, totally changed, and if being awake at 3 or 4 am means I have the time to write a blog, then that has to be a positive. Right?
I’d like to start with a survey done by Alzheimer’s Australia they released yesterday, as part of their Dementia Awareness Month activities. In this survey of more than 1,500 people , including people…
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I too signed up for the the Pyjama Party last night and it paid off as we wandered around the night spots in Cleethorpes at midnight. My attire was well received and I was struck by the kindness of the locals. I hopefully eased the concerns of one doorman by mouthing that Maureen had dementia: goodness knows what he thought I had when he saw my attire. The good news is that the place really comes to life tonight so the availability of company at midnight and beyond is even greater
We eventually managed to get some rest at 2.30 am with Maureen anxious that I shared her bed. Her fear at the moment is paramount and it is possible that it is linked to the concern about being homeless. One of her realities yesterday was that we had eloped to the coast together leaving our children in the care of our other halves. She was at pains to tell me that we shouldn’t have let our hearts rule our heads and feared being thrown out when she confessed all.
Maureen son came to our rescue at 10.30 pm his response to my cry for help calmed his mum somewhat. Just the sound of Colin’s voice seemed to relax Maureen but dementia meant that she soon forgot his short-term magic. I have declined his offer to come over today as I’m hoping that Chloe may give us a foothold this morning. She is back from holiday this morning as is Gail next week. With Dianne here tomorrow I’m hoping that as the holiday period for Carers is drawing to a close we may reap the benefit. However I need to say at this juncture both Hica and Hales our respective Care Agencies are pulling out all the stops to support us as Maureen’s condition continues to challenge us all.
I had an excellent meeting with Hica on Wednesday. They have taken all of my concerns seriously and remedial action in the form of additional training is underway. Sadie has pulled out all the stops in the last two weeks to ensure that replacement staff are known to Maureen and have experience and expertise in dealing with dementia. The one exception was Claire who came yesterday and she got on with Maureen like a house on fire. Have to break off now as Maureen is awake and scared out of her wits again ……….something connected with people being burned on a train. I’m hoping that tea and TLC will help her get back to sleep!
The pressure is on here like never before or so it seems.
Maureen is extremedy frightened and confused. She is skipping between time zones in her life like nobody’s business.
My Lap Top is being sorted I dare not go upstairs to use my Desktop because it is risky to be out of Maureen’s line of vision. Thank goodness I have a new phone but I’m not finding this easy!
Normal service will be resumed as soon as possible.
We might be out for another walk in the dark again shortly as Maureen can’t seem to rest.
Maureen often wears her pyjama trousers underneath her clothing: yesterday she went commando and revealed all. For large periods of the day she was openly clad in pink and white checked pyjama pants.
We got off to a hilarious start to the day when she decided that it would be a good idea to cultivate bananas in our neighbours garden. On the second of the day, around 8 am, she lobbed a banana skin over our neighbours fence. She returned to the house in hysterics over her antics. Little did I realise at that stage how much we would need several of our neighbours to get through the day unscathed.
I should have known early on that we were in for quite a day after posting Barrie’s birthday card. When we returned from posting her brother’s card she thought we had arrived at his house in Nottingham. She refused to get out of the car and slept in the passenger seat for a while as I remained vigilant by I tidying up the borders in the front garden.
In the afternoon I had to seek Kate’s intervention to enable us to get home in one piece. Maureen had taken off towards Grimsby following my medical appointment and nothing I could say could persuade her to get into the car. I hate to think what would have happened if Kate hadn’t come to our rescue on such a warm day.
At 10 pm I returned downstairs from cleaning my teeth and there was no sign of Maureen. I summoned help from two doors away and Zak and Lydia returned from their search empty handed. Ten minutes later I saw Maureen making for home but lost her at a neighbour’s doorstep. Paul and I found her in his back garden excited to tell us she had been out ‘on an adventure’ – we wondered if she was secretly checking on the germination of the banana She was keen to show me where she had been and to relay her disappointment that ‘none of the other girls would play with her’.
Maureen woke me at 2.30 am to say she was worried that she had lost the little boy who had been in her bedroom. As I tried to console her she told me that her husband would be home from work soon. She then slept in an armchair for a short while
At 6 am Maureen planned to make her way home then had a change of heart deciding it is a little cool to walk: not surprising when you are in your P J pants! She is now sitting in a chair looking perplexed I have no idea what is going on or what to do. The one thing she needs at the moment is rest and who knows who I’ll be when she wakes up. I’m hoping that absenting myself by going upstairs will do the trick.
I’m hoping that Maureen’s cold is creating significant changes in her presentation. We were warned early on that any infection creates havoc with her condition: only time will tell.
Compared to Monday we had both had a reasonable amount of sleep last night. It’s amazing how a night’s rest helps to clarify early morning thoughts and I’ve had my thinking hat on from 4 am.
I have decided to withdraw from the Blogging, Branding and Growth Course: sprucing up my Blog and growing my readership is hardly a priority at the moment.
What I need to do is to ensure is that my communication with Maureen is effective. This means I need to think very clearly about what I say and how I say it.
This video clip from Teepa Snow sets me on my way to my wife understanding me:
Teepa is very generous and produces lots of video clips that are available free of charge. I will make time in the coming days to review my approach to communicating with Maureen by having time with Teepa. My other focus will be on attempting to move her from the sofa and engage with those things that she shows an interest in.
It is Maureen’s brother’s birthday this morning and that opens up all sorts of possibilities for engagement. His card remains in our address book so I will bring it out into the open. This might lead to a walk to the Post Office and the possibility of a phone call.
I’m scheduled for a meeting with Sadie at Hica our Care Agency this morning. I have a bill to pay for two overnight sits from my visit to York. Sadie has now completed her investigation into some shortcomings during my three days of Respite. I plan to use our meeting as an opportunity to build on the positive relationship I have developed with Sadie and let bygones be bygones. On many occasions I know that Hica are now going the extra mile for us and that makes such a difference to our journey.
I have an appointment with a nurse to have my ears syringed this afternoon. I’m planning to see Dr Munjal while I’m down at our Medical Centre to discuss Maureen’s wellbeing: her bloated stomach is still giving me cause for concern. I also need to update him on why I have cooled on the idea of Day Care.
Things nearly got out of hand at 11.30 pm last night. Maureen woke up and came into my bedroom like a hurricane wanting to know where the other people were. I woke up in a daze and mumbled something about the fact that we lived here alone. What she called me doesn’t need to be repeated but not content with abuse she hurled things in my direction and went on to threaten to smash the place up. Once again she believed she had been imprisoned here against her will.
Fortunately that storm was short lived and she soon took to the sofa and drifted back into sleep. I took the opportunity to ring up the Konar Suite to take advice on what to do if Maureen returned to her theme. Vicky one of the nurses on duty gave me a simple line: ‘everyone else is in bed because its midnight and we need to get back to sleep’. She also suggested that I add ‘they will be visiting us in the morning’. It is helful that I canring the Konar Suite whenever the Home Treatment Team is unavailable: little wonder that dementia support in North East Lincolnshire is so highly regarded.
I also made the of giving Maureen too much space as I tried to orientate her and that backfired. When I came downstairs a while later I thought she had ran off. After convincing myself that she had gone outside in the darkness I found her cowering in the utility room, armed with a gardening shoe. Once I calmed her down she told me that ‘the man who lived here had locked her in’.
There have been a couple of other incidents earlier this morning when Maureen has been struggling to orientate herself. She has been unsure how to find her way to the bathroom or to understand where the others have gone. She has just asked me what she is doing here as she thinks she lives elsewhere in Cleethorpes.
These incidents during the night were disappointing after a rather pleasant Bank Holiday afternoon. We had a seemingly ordinary time together pruning a tree together followed by a picnic in the garden.
Maureen’s presentation can change very quickly at the moment: with my status going from hero to zero within minutes. This means that I have to stay vigilant at all times. I need to be really careful what I say when she is struggling with orientation or I’ll pay a heavy price when I get it wrong.
Dementia: Sharing The Good Times 