There have been many requests for an update on Daniel, the man who I support for twelve hours each week (two six hour days). I first wrote about Daniel in a post in March 2014.
Daniel is in his late 30s but has a very aggressive form of MS plus Early Onset Alzheimers Disease. Both conditions are ‘progressive’ in the worst sense of the word and Daniel is now much diminished, both mentally and physically.
From a range of things he used to talk about and enjoy doing, he is now at a point where he could easily just watch television 24/7. The one thing he still likes is to sit in the passenger seat of a car and be driven around, with Radio 2 or Radio Shropshire playing. So I mainly now take him to places, whilst bearing in mind that it is the journey he really loves.
Having worked with him for over three years, I have developed a narrow but potent array of ways to make Daniel laugh. He laughs with his whole being and it is a joy to see him snatch brief minutes of mirth from his relentless, pitiless debilitation.
I won’t disclose all the tricks of my trade here, but one sure-fire method is to do a grossly over-the-top impersonation of a drunken Aussie (the only country outside England he has ever been to). Another method is to play with the words of songs on the car radio, usually in a moderately risqué way.
Sometimes the relaxed nature of the car journey situation helps me to plot the course of the dementia. Memory is the obvious theme. When someone is elderly there is always a question as to whether memory loss is ‘normal’ or a sign of dementia. With someone as young as Daniel it is easier to track the erosion.
However, here is a glimpse of a recent exchange that demonstrates how over-subtle one can be.
We are cruising along in the car and Daniel is struggling to remember the words to ‘Oops! I Did It Again’ by Britney Spears. He gets the chorus right (which is “I’m not that innocent”). Some songs stay in his mind longer than most personal memories. The next song is the old classic ‘When I Fall In Love’ by Nat King Cole. Slightly to my surprise Daniel sings along in word-perfect fashion.
Daniel (singing heartily): When I fall in love, it will be for ever / Or I’ll never fall in love…/ In a restless world like this is, love is ended before it’s begun / And too many moonlight kisses seem to cool in the warmth of the sun…/ When I give my heart, it will be completely…
Ted (sings along then thinks he notices that Daniel has become a little melancholy and pensive. Starts to wonder to himself if any romantic memories still exist within Daniel about his former fiancée, Heather): Great song, eh!?
Daniel: Great song! Good singer.
There is now only talk on the radio and Daniel sings the song wistfully again.
Ted (looking at Daniel to gauge his mood): Very good words too. Did you ever give your heart to someone, Daniel?
Daniel: Yeah…(pause)…I gave my heart to Heather.
Ted (conscious that Daniel has not referred to Heather for over a year and thinking that perhaps some residue of deep feeling and romantic longing might still be there): Yes…you used to tell me about Heather…what was she like?
Daniel (longish pause): Good lookin’ piece. Good lookin’ piece.
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A number of readers have suggested that I should post the results of my thoughts on the “What To Do With the Rest of My Life?” matrix as set out in the link in the entry for September. Well, I have pressed each of the twelve brain cells in my head into jury service…but I’m afraid that they are still ‘out’, engaged in animated debate in the jury room whilst enjoying the hospitality of the court.
All I can say so far is that no tickets to ride to another continent have yet been purchased; Pick Up the Pieces has been sent to an agent; two Mueller’s Reversible Thumb Stabilisers have been acquired to ensure that there are no technical or directional obstacles to hitch-hiking; no For Sale sign has appeared outside my home; a work-table on which to make collages has been rescued from redundancy in a friend’s outhouse; much mariachi music has been listened to; a token bib has been burned outside the local Sure Start Children’s Centre; no crime has been committed, though several sins have (including the telling of two porkies in this paragraph…a vast array of prizes for whoever can guess which two).