a brief history of Mum's dementia

I first became aware of Alzheimer's Disease in my teens. I remember a drama on TV where a woman was coping with her Mother's deterioration. There was one scene which stuck in my head where she found her Mum awake in the early hours of the morning, using the vacuum cleaner on the lawn. I remember that my own Mother found the play particularly upsetting, and she subsequently never tolerated any childish taunting that a slip was an early sign of Alzheimer's. It became a taboo subject in our house.

The next significant event, looking back, took place at my Sister's Wedding (about 12 years ago). My Sister had been living overseas and a lot of the planning for the event fell onto my parents. When we all gathered, a few days before the Wedding, we found Mum in a high state of tension, panicking about trivial details. We tried to laugh it off but then, during the Service, Mum suffered a Stroke which paralysed her on one side of her body. She recovered within a couple of days and all returned to normal.

When my Dad died, in 1999, I found Mum quite confused about a lot of things. I didn't fully accept her excuses that she was grieving and exhausted from my Dad's slow death, but then I didn't take any action at the time either. I suppose I couldn't deal with it on a subconscious level and managed to ignore the elephant in the room (hmm.. elephants are associated with a functioning memory, so not a great choice of expression). I do recall being pretty annoyed that my Father had done nothing to prepare Mum for coping alone: feeling that he should have familiarised her with the family finances, at least. It's easy for me to see now that Mum was already showing small signs of Dementia. Perhaps one reason I ignored what seems so obvious was that the subject was so off-limits in our family. Mum insisted that she was alright, and I was working hard at my new job 400 miles away, so I allowed her to carry on. She began to inflict a series of unnecessary and costly renovations on the family home, inspired (I suspected) by a desire for company. She kept saying that she was going to move, but then would spend thousands on some highly personal touch, usually carried out by one particular handyman (appropriately, it later transpired) named 'Robin'. It seemed that Robin was always there and jobs were invented to keep him around.

In 2002, my Mother finally decided that the time had come to move into a retirement apartment about 20 miles away from home. I was concerned that she would be moving away from an important support network of neighbours and friends, but I could see her point that the house was too big to manage. She also took up an offer from a Property Developer to fly her out to Spain to look at an apartment, and she came home having signed a deal and paid a substantial deposit. With both deals, Mum insisted on handling things herself, despite my offer to participate. I had strong misgivings, but was very busy heading into the final stages of a work-related breakdown at the time. I wasn't very surprised to hear that Mum had accepted a low offer for our home, knowing how easily swayed she was by anyone who took time to meet with her. Meantime, as the house deal went through, I realised that Mum was inconsistent over how many payments she had sent off to the Spanish property company. Again, I can't understand now why I didn't intervene immediately.

I finally arrived to help her move home only to find that Robin had got there before me and most of our furniture and memorabilia had been willingly handed over to him in gratitude. Mum told me how poor Robin's family were and how he had no pension to look forward to, forgetting that she'd also told me that he drove a Rolls Royce. So, we moved Mum into her new apartment, which she'd bought off-plan failing to notice that the view from the living room would be a brick wall 5 feet away. Robin promptly disappeared from her life, and Mum instead leaned heavily on the charming Salesman, living in the show flat, calling on him several times a day for advice and help. She scoffed when I told her that he would be moving on as soon as the apartments were all sold - which he did, of course.

I finally found an excuse to intervene in the Spanish deal when I realised that a year had passed since Mum should have received the keys. It turned out that nothing had been built. I asked the company to fly us both out to find an alternative apartment. I remember waiting at 'arrivals' in Barcelona airport and seeing Mum come through, beaming and bewildered and guided by two other concerned passengers. She looked so vulnerable that it broke my heart and scared me at the same time. The 4 hour car journey to the isolated development set me wondering how practical this deal was for Mum (who never drove down unfamiliar roads in the UK and didn't speak a word of Spanish). Over the course of 4 days, I found that Mum hadn't thought through how she would survive here and hadn't any ability to cope in this environment without a companion alongside her. She couldn't understand foreign exchange rates and couldn't even find her way back to her hotel bedroom without assistance. I helped her pull out of the deal, but I'm convinced we only recouped a fraction of what Mum had paid out. Mum accepted that the property deal had been a disaster and was grateful that I had intervened. 

We settled into a routine where she would ring me almost daily with some problem, which I would do my best to investigate and resolve for her. It was difficult doing so from a distance, especially when Mum couldn't read documents out over the phone consistently. Some companies, too, wouldn't deal with me without Mum present. Mum's Solicitor began talking about me registering a Power of Attorney over Mum's financial affairs. I stalled, feeling uncomfortable about it and convinced that Mum would dig her heels in once her mental capacity was questioned.

It seems to me that I finally woke up this year - woke from a half-slumber where I was half-aware of what was going on but hadn't grasped what it meant. I can't account for why this was so. The warning signs had indeed been there for years, I can see them now. It took a couple of family friends and relatives to finally shake me awake, to whom I'm grateful. Mum's decline has been fairly rapid recently. I don't know if this is a common experience, but it seems that my interventions (while necessary) have sometimes speeded up the progress of the Dementia - as if once Mum's getting help with something, that section of her brain finally gives way and she becomes helpless in her capacity to do that thing. However, there's really been no option but to go forward, for health reasons.

I've mentioned Mum's CT scan and diagnosis elsewhere this year. I think I've sufficiently covered the loss of her ability to cook, her loss of understanding around time of day, her recent inattention to personal hygiene and appearance. I just thought it might be helpful to tie her history up into one post to show the progression of the disease so far.