Thursday 23rd August
I have been reading a book called “KEEPER” by Andrea Gillies. It is true story about a family caring for a family member suffering from Alzheimers disease. The following short excerpt echoes in my mind, almost on a continuous loop.
“IF I HAD to pick one catchall descriptor for Nancy’s life in the last few years it would be misery. Profound misery, unceasing and insolubly a family member suffering frome. She knows that something is wrong, very wrong, but what is it? She’s had a series of terrible daily encounters with herself and her environment that might have come directly from an amnesiac thriller: waking to find she has aged fifty years overnight, that her parents have disappeared, that she doesn’t know the woman in the mirror, nor the people who claim to be her husband and children, and has never seen the rooms and furnishings that everyone around her claims insistently are her home. Time has slipped, gone seriously askew. Every day for her is spent in an ongoing quest to put things right. The trouble is, she can’t seem to concentrate on the question or on possible clues to it. She can’t navigate the problem. When she left us for the nursing home, she was daily engaged in a very protracted, slow-motion form of panic. It’s been over eight years now since the formal diagnosis and eleven years at least since symptoms began, but even after all this time, she’s only at stage 6 of the disease. Stage 7 looms, the cruelest and last phase, with its loss of continence, motor control, speech, and ability to swallow. Eventually her lungs will forget how to breathe, her heart forget how to beat, and her quest will come to an end.”
Our Dad (that is, Dad to my brother Allan and sisters Enid, Bev and Sandra) died, not from Alzheimers but something I believe Alzheimers created. I suppose Dad was in Phase 7 as described above and even as he progressed from stage 6 to 7 there were moments of something like clarity and understanding on his part. Truthfully, they were only moments. I know that sister Enid probably saw the worst of stage 7 but by then he was in a nursing home and gradually deteriorating.
On reflection it seems so much time passed while he gradually worsened. In reality it was a relatively short period but the near daily dramas made it feel much longer.
My sisters and I tried to keep Dad independent and in his own home. That became increasingly difficult and just like the author of the book, we made the gut wrenching decision to have Dad enter a nursing home. Even carers starting off with the best intentions finally make the same decision.
We all watched and felt the repercussions of his gradual loss of short term memory. That was frustrating and difficult to continually try to remember this was a disease taking his mind and not some game he was playing and tormenting us with. We learned patience ( a long slow process in itself) which does not always come easily. Next we experienced the loss of even some of the long term memory and a gradual decline of knowing who he was or where he was. For a while he wanted to “go home”. Home being somewhere in his mind which only he knew or maybe not knew but had a vague idea home was somewhere else. Gradually that passed and every day for him became a challenge to not only know who he was, where he was but even recognising his children was gone. Recognising the people around him was like meeting new people every day.
Tunes are stored in a different part of the brain than words. That particular part of the brain is the last to lose its contents. That is why music seems to reach the Alzheimer sufferer with not only the tune but the words that go with it. Incredibly Dad remembered words and tunes but often did not have words for a conversation.
The last part of the brain to be taken over by the disease is the Cerebellum, tapping along, singing, clapping along and humming along with a song gets the cerebellum working. On my last visit with him I am still unsure if he knew I was there or if he did, did he know who I was? Music was playing in the hallway where we were sitting. The song was, “Those Were The Days My Friend”. He knew the tune AND the words. The song was not from his youth nor from his young adult life. The song was first released in 1968 sung by Mary Hopkins and produced by Paul McCartney. Dad would have been 50 when the song was released. At the end of the song after he had talked and sung and hummed along he declared “Oh wow!”
I am writing this for a couple of reasons. One is for my own, perhaps belated understanding but mainly to bring to the attention of any reader who may have a loved one or even a friend who has been diagnosed with Alzheimers Disease. Knowledge will not stop the disease as there is no known cure but knowledge may help you to understand and come to terms with what is happening. As well it may help you to accept the increasingly difficult behaviour. Not only what is happening now but as the disease progresses. It may help with learning new ways to cope and learning the big new talent… PATIENCE.
If you are interested, the book is available from Amazon.
I may be able to help you with a digital copy. Please contact me by email or leave a comment on this post with your contact details.
Friday 24th August
I looked back over what I wrote yesterday and recalled something which annoyed me, stuck in my craw and it still aggravates me, came to mind. In the early stages of Dad’s disease he was still independent, ambulant, still driving, still getting his own groceries and still paying his way. What annoyed me was this. His bank insisted he have a debit card which has those four numbers called a PIN. Personal Identification Number. We all have one and many people, much younger than Dad would forget the number and usually write the number somewhere they can find it easily. Dad forgot his number and forgot where he wrote it. We would go to the bank and in their wisdom the bank would issue a new PIN. Then the next time he forgot they would issue a new PIN. The bank kept saying they did not want customers coming into the bank every second Thursday to get their Pension. They wanted Pensioners to access their money via an ATM. Grrr! Banks still do this. Getting money from his account was always a stressful time for him and Enid when she had to sort it out for him. Surely the hierarchy in banks knows and understands that Alzheimers is here to stay. Could they not come up with a different way for a customer to access their money in that interim stage between astute mental clarity and when they lose all short term memory and need a carer?
Today I visited the Skin Doctor who firstly gave me the all clear on the cancer he removed last week. He has removed all traces of the cancer. He removed the 5 sutures, froze a few non malignant skin cancers and sent me home.
This evening we had some rain with thunder and lightning.
Saturday 25th August
Amazing experience here this morning. We were on our way by 8am.
We tracked through Toowoomba, Dalby, Chinchilla and stopped for lunch in a pub at Miles. The highway between Dalby and Chinchilla is undergoing huge roadworks including in the main streets through the towns. Two lanes is being turned into four lanes.Bae of people wanting coffee and cake.
Back on the road we arrived in Rolleston just on midday. We stopped for a toilet break and found another barista at a Coffee in the Park van and doing a roaring trade with the Grey Nomads constantly stopping.
The coffee shop and sandwich bar across the street, the only other food outlet in town was closed.
On the road for another hour we passed through Springsure
and later stopped at Red Rooster at Emerald for a yuk lunch and an hour later we were in Clermont, a Gold and Coal Mining Town. Gold was discovered here in 1861.
The final push of about 600 Klms to Townsville begins in the morning.