I put on YouTube this morning and there was Dekyong sharing wisdom:
I have found this teaching inspiring at a very challenging time in our lives.
Category Archives: General
Dementia: The Goal Posts Have Shifted
Maureen’s dementia has changed its approach: playing a high press.
I need to revise my tactics at a time I’m short of fit players.
There were moments yesterday when I was totally outplayed.
I didn’t hear or understand my coaches’ message.
Thankfully, my Key Worker is back today.
The opposition is resting peacefully.
I’ve not had enough decent sleep.
A sinus infection is developing.
Have to blow rather gently.
Must breathe very slowly.
Play for time.
Be patient.
Smile.
Dementia: Would Less Be More?
We had a great day yesterday with lots of laughter, song and rest. Maureen was very busy making a helpful contribution throughout the day to all sorts of things. The only thing that was missing yesterday was a carer: Girl Tuesday had been mistakenly cancelled.
It is well known that dementia that is predominantly vascular is a roller coaster of a ride; perhaps the Big Dipper. There is no alternative but to enjoy the good times and roll with the challenging moments. The danger, of course, is to think you have ever turned a corner and to accept that misused phrase: ‘that things can only get better’. However, I’m still left wondering if a reduction in the number of carer sits might be productive as Maureen feels their visits are an intrusion on our closeness.
The only problem in this dilemma is after a bad night I’m counting the hours until 10 am when there will be someone else in the house. When the ‘happy couple’ has had a good night together it is a different story: we both are, and always have been, happy in our own company. In fact, we both agree we don’t really need anyone else.
Dementia: A Blessing In Disguise
When our carer didn’t show this morning I phoned up the Agency to see why she was late. Then I put on my reading glasses and saw the red asterisk on the schedule. Had I been a little more vigilant I would have taken action earlier and Girl Tuesday would have been here. However, this is not a mistake I have paid for – quite the opposite as we have had a lovely morning together: singing to Youtube followed by a long siesta.
One of the facets of Maureen’s condition is fluctuation in her presentation. Last night we slept well together with Nurse Maureen wanting to tend to her poorly husband. This morning I have struggled to keep up with her dialogue: never quite sure if she was talking about the past, present, or future. One minute she is talking to me as her husband the next he is the subject of her discussion: I’m pleased to hear that she generally speaks well of him.
We are both still reeling from this flu-like infection. Although I’m not pleased about feeling rough I’m reassured that it is likely to be behind Maureen’s time travelling and increased level of confusion.
Dementia: Frank and Meaningful Talks
Our Best Interest Discussion went well yesterday and I’m going to request that the meeting is reconvened today to explore some further thinking on my behalf.
Dementia:Getting Out Of My Sick Bed
I have chosen to get out of my sick bed to attend today’s Best Interest Discussion.
Yesterday, I was informed that the meeting would go ahead even if I wasn’t there.
Today, it’s a different story and the meeting could be rearranged.
However, procrastination is the thief of time and there are plans to be made.
Once Maureen has recovered from her infection she needs to move into Residential Care.
Just to be on the safe side I have asked an advocate to accompany me at the meeting.
Dementia: Calling In Sick
I feel dreadful this morning despite following advice on how to handle this infection.
I’m going back to bed and will try to rest for the remainder of the day.
Thankfully, Chloe our most experienced carer will be here at ten.
Dementia: I Don’t Believe It!
There are times when I want to scream at those jobsworths in the Care Sector. Today’s carer has been told off for collecting some essentials from Tesco. Her Agency phoned to remind her she is here to sit with Maureen.
I have flu and am finding it difficult to stand. Maureen is very poorly as the infection is wreaking havoc with her presentation. She is worried whenever I’m not close at hand. Would the Agency want me to shop when I’m unwell and leave Maureen with a stranger? Seems to me that dementia awareness is lacking somewhere and it isn’t here!
When Lynne arrived at our door for the first time yesterday she said: ‘I know nothing about Maureen’. Then she had to work from a temporary Care Plan : thank goodness our considerate regular Agency provides our carers during the week!
Dementia: Light At The End Of The Tunnel
When I explained my thinking on Residential Care for Maureen, to the nurse from Rapid Response yesterday he said: ‘there was now light at the end of the tunnel’ . That is not necessarily how I see it but once you accept that Residential Care is needed a spring returns to your step. The irony is that I’m having to carry on with the type of infection that would have laid me up in my working days. In fact, we would have both been off work with this persistent virus.
It is fortunate that Lynne, today’s carer, will be here at noon to help us cope today. I have explained to Maureen that today’s ‘Shopper Lady’ will buy what we need and make sure we are fed and watered.
Maureen’s infection continues to impact upon her presentation: she is very frightened and emotional. If I am out of site she seeks me out as she cannot face being alone for very long. It’s a pity she won’t take ‘propolis’, a homoeopathic remedy that always seems to bolster my immune system. However, it doesn’t seem to be doing much yet so I’m using paracetamol to keep me on my feet for.
One consolation Craig’s temporary fix on our central heating boiler is holding up. It needs replacing along with several radiators that are long past their sell-by date. I’m giving the heating system daily TLC as I’m not sure what we’ll do if it gives up the ghost!
Dementia: Toughing It Out
The advice from all quarters regarding our infections has been to ‘hang on in there’ until the discussion on Monday afternoon. Rapid Response visited yesterday afternoon to check our treatment plans were on the nail. I was told we were following the book in our approach to treating this horrible infection. Not surprising when Maureen and I have never reached for the medicine cabinet when dealing with a virus.
Yesterday’s carer was one of us: a solid citizen as one of my friends used to call like minded comrades. She provided excellent support in our two hours of need. Lynne is another one of those carers who realises appropriate help is the order of the day rather than playing it by the rule book. I’m grateful that she will be back later this morning for another two-hour stint.
Once you accept that it is impossible to provide the 24/7 care that your loved one needs light appears at the end of a very dark tunnel. As Monday afternoon nears that light is becoming even brighter.
Footnote: A very early post as we are following instructions to sleep when we can and ignore what time it is. We’ve both had our heads down from very early evening and have permission to forget what the clock says for a couple of days!!!!
Dementia: Sharing The Good Times 