Remembering My long Holiday With Billy

 Back in October 2013, I was having a bit of a moan about how my son was away for a second holiday that year. My daughter wasn't about when I called her care home on her birthday, only to find out that she was also on holiday, as that's what she had asked for the staff to organise for her birthday.

I was finding myself at a loose end and alone in the flat I shared with my son and his girlfriend at that time. An old friend of mine messaged me from the hospital where he was recovering from a major operation and said that when he was well enough to leave hospital I could stay at his place for a break away in Eastbourne.

I started visiting him regularly in Brighton Hospital, which involved a round trip of about 8 hours, on foot and by ferry, rail and taxi. Then when he transferred to the hospital in his home town in Eastbourne the round trip was about 10 hours. We got on so well that we ended up sharing a flat for 9 years after a couple of months of emergency housing in Travelodge.

Billy died last year on November 25th and left me with so many fun memories of the longest holiday I have had 

Positivity Please

 I was really impressed with all the publications sent to me from The Alzheimer's Society. I have a lot to keep me focussed in a positive way. I need a bit of positivity after attempting to start on some puzzles from this book and realising I can no longer do any of the puzzles I used to be able to complete easily, a couple of years ago

Next Step to A Diagnosis

 

Things appear to be moving forward very quickly recently. I had a memory clinic appointment on the 13th of November and while I was there, the Doctor who saw me said that she would refer me to the Neurology team.

The appointment letter arrived today and as instructed, I rang the memory team who had said they would help with a volunteer to get me to the appointment and stay with me. No one in the memory team seems to know anything about the arrangement so I have had to ask my personal assistant to help. Luckily she is available for the Dementia Neurologist appointment.

My appointment is on December 1st and involves a round trip of around 40 miles. I had no idea it would be so tricky to get anywhere near getting a diagnosis.

Compassionate Communication with the Memory Impaired by Liz Ayres

Compassionate Communication with the Memory-Impaired

by Liz Ayres
A Volunteer of the Alzheimer's Association and Former Caregiver

DON'T
Don’t reason.
Don’t argue.
Don’t confront.
Don’t remind them they forget.
Don’t question recent memory.
Don’t take it personally.



DO
Give short, one-sentence explanations.
Allow plenty of time for comprehension, then triple it.
Repeat instructions or sentences exactly the same way.
Eliminate 'but' from your vocabulary; substitute 'nevertheless.'
Avoid insistence. Try again later
Agree with them or distract them to a different subject or activity
Accept blame when something’s wrong (even if it’s fantasy).
Leave the room, if necessary, to avoid confrontations.
Respond to feelings rather than words
Be patient cheerful and reassuring. Do go with the flow.
Practice 100% forgiveness. Memory loss progresses daily.
My appeal to you: Please. elevate your level of generosity and graciousness.



Remember

You can’t control memory loss, only your reaction to it. Compassionate communication will significantly heighten the quality of life

Used with permission from Ellen Warner at Ageless Design

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Neurology Appointment Update

 So the letter from the neurology team arrived. Although I was told at the memory clinic I should let them know about the Dementia Neurologist appointment as the memory team would help on the day, I called as suggested and was told they couldn't help.

So patient transport was suggested but they just sent a driver to take me there and drop me off at reception.

Thankfully, I had the foresight to spend all of my PIP on paying a personal assistant for a couple of hours of support a week, who would drive me there and stay with me through the appointment too. Sometimes you just have to plan ahead and not rely on standard support

My First Memory Clinic Appointment

 

My first memory clinic appointment was this afternoon. It felt really strange that I needed someone to support me with this. I'm now in my early 60s and feel like I need a grown-up with me to hold my hand.

We met with a doctor who put me through a bunch of memory-related tasks and then sent us back to the waiting area so she could make an assessment of the information gathered and look at the scan that I had back in June this year.

I have been told that the results of the tests today are inconclusive. The scan result was that it showed minimal to moderate shrinkage compared to scans of healthy people in my age group.

I now won't be seen by the team for a year to check my progress and I have been referred to a neurology team for a bunch of further investigations to exclude other conditions.

I really feel like I have been left in limbo as I still have to manage my memory issues which impact my daily life and make it very difficult to live my best life.

It's really not good news for me as without a diagnosis, I have probably a 20-year wait on the housing list for supported housing. I doubt I will live that long as I also have heart failure and am in stage four of that

edited to add thoughts the next day

The way it was explained to me is that they can't come up with a definite diagnosis of Alzheimer's until the brain shrinkage is more obvious on a scan.

They don't take into account that the reason other people don't appear to have seen changes in me is that I don't see anyone who sees me regularly who would have reported their views back to me.

It's really frustrating as I have now had to give up working in online retail because of the issues I am having. I have lost most of the website-building skills I used to have and need all sorts of disability-related support online to help me write my book. Ironically, one of the manuscripts I am working on is an account of my continuing memory loss.