Before I approach the main subject of this blog, I'd like to share the reasons why I am no longer a Graphic Designer working in marketing, and why I have chosen to use my skills and experience to help others who care for someone with dementia, and those who have dementia.
In 2011 my Mother was diagnosed with vascular dementia. Many of us have close relatives who have been diagnosed with some form of dementia - the two main types of dementia found in the elderly are, Alzheimer's and vascular dementia. I have, unfortunately, experience of both.
My Uncle (my Mother's brother) died as a result of Alzheimer's a number of years ago, and now my Mother has vascular dementia. Thanks, in a way, to the symptoms I saw in my Uncle, I was able to understand, even before diagnosis, that my Mother was developing some form of dementia.
Then everything changed
Until the beginning of 2012, I was a full-time Graphic Designer, and had been since graduating in 1981. 2012 changed all of that. I am an only child. Therefore, when my Mother started to reach the stage of needing help - it was quite natural for me to take on the role of carer.
The early symptoms were seemingly trivial. She would forget how to use the stove, or the washing machine, claiming that she had never used that particular one before. Yet at other times had no problems at all. The first warning sign, as I know now, came several years earlier, when she had a mini stroke, or Transient Ischaemic (US: Ischemic) Attack (TIA).
Later CT scans revealed this old infarction, and the scarring it had caused to that part of her brain.
Prior to diagnosis, she'd had a number of falls, none serious until she broke her wrist. At this point she was still, in almost every way, perfectly able to carry out everyday tasks. Yet, somehow I knew something wasn't quite right. As well as being a Graphic Designer, I was also a part-time (Territorial Army) soldier. Weekends away, were not a problem, but two weeks Annual Camp became more difficult. Especially by the time my TA responsibilities, through promotion, became more involved and complex. On the one hand, I was helping young soldiers, whilst on the other, beginning to care for an increasingly elderly relative.
Juggling my duties, between having to call Mum to make sure everything was OK, several times a day, and carrying out my TA role, resulted in me ultimately leaving the TA. I could no longer carry out both. My last Annual Camp showed me where my responsibility should be in the years ahead. I could no longer commit to my military duties, and look after Mum, at the same time.
Working no longer viable
A couple of years later, this also became the case with working. I'd worked, on a freelance basis, for a very understanding company until 2011, by this time Mum was living with me. That work came to end in early 2011, after which I ended up working for a different company, with a completely different approach. By early 2012 it became clear once more that I could no longer carry on working, and look after Mum at the same time.
I became a full-time carer. Not that the government rewards us well for this, but more of that another time.
During 2012, it became clear that where we were living was no longer suitable for Mum. So in August we moved to a two bedroom ground floor apartment, well adapted for people with disabilities. Wider doors, level access throughout, and a wet room with a fold down shower stool.
UTI and TIAs
All was fine, for a short while. Until late September, when Mum had a small number of TIAs (Transient Ischaemic Attacks or Mini Strokes). She ended up in hospital for a few days, then returned home. Her already decreasing mobility, continued to decrease still further. By the end of October, she was hospitalised again, this time for three weeks, thanks to a severe Urinary Tract Infection (UTI).
Initially she had a cannula inserted, and was put on a drip, along with a catheter - the day she was admitted, I almost thought I was going to lose her. She was drifting in and out of sleep, and almost motionless. Fortunately, by the time I visited the following day, she had improved.
Hospital visits were difficult to say the least. I was now learning that the Mum I had known for all my life, was becoming a frail and vulnerable little old lady, and was losing the ability to do many things for herself.
Whilst she was in hospital, Occupational Therapists started making arrangements, at home, in time for her discharge. These included, a community bed (often referred to as a hospital bed) complete with air mattress, a commode, a hoist, wheelchair etc.
Mum was no longer able to weight bear, her leg muscles had become weak, and she was no longer able to stand or walk. Initially transfers to and from the wheelchair and the commode were carried out using the hoist, but she hated that. So, now, transfers are carried out using my strength and a slide board. She still doesn't like it, but it is far quicker than the hoist, and she doesn't have to be put in a hoist sling.
Carers come in four times a day to assist with washing, and the commode where necessary, and also provide Mum with a little extra company.
My cousin used to visit once a week, for a while, after Mum came out of hospital. These visits, however, became shorter and shorter, and it was becoming increasingly clear, that she felt she (my cousin) had better things to do. After a disagreement, when she brought up a subject, which I had already told her not to raise in front of Mum, I made it clear she was no longer welcome.
This sort of situation is all too common with relatives, and indeed friends, as they begin to distance themselves from someone with an illness, they don't understand.
There are others, however, who have a completely different approach. One friend of mine, who is also going through a difficult time - his Father has asbestosis, and is undergoing both chemotherapy and radiotherapy - visits on a regular basis, and fully understands Mum's condition. In fact, we are able to give each other some much needed support - even if it's just spending an evening chatting over a few drinks. I understand his situation, as my own Father died in 1994, as a result of cancer of the oesophagus and multiple myeloma.
Where we are now
Mum's conversational abilities are still good, even though she may go off at extreme tangents at times, and she still has a wicked sense of humour. However, her cognitive skills have diminished over time. She enjoys her cuddly toys, and treats them all as if they were real living pets - talking to them and cuddling them. She can still read, but no longer reads books or magazines - there's just too much information to take in - and she'd probably forget what she's just read anyway.
Entertainment and activities
Mum has a TV in her room, and enjoys watching that, though she sometimes believes whoever is on TV is actually in the room with her, and sometimes gets agitated or upset over some programmes. So I have to be careful about what she watches. News programmes in particular are generally avoided, as these can upset her.
There is also a DVD player, and she particularly enjoys watching older TV comedies - we have As Time Goes By, The Good Life, To The Manor Born, Yes Minister, Yes Prime Minister and The Vicar Of Dibley on DVD. Her favourite though, is watching Andre Rieu concerts, we have four on DVD. Using a video sender/receiver, she can now watch Sky, rather than the more limited Freeview channels, and is now able to watch Gold, where many of her favourite comedies can be found.
I've also put together an activity tray full of various objects that she can "play" with. They consist of pieces of coloured wood of various shapes and sizes (originally purchased for my small parrot), a child's shape recognition toy, cardboard tubes, various craft items, and some splash balls, one in the shape of a pink octopus, affectionately known as "Olly".
Eating and drinking
She can still feed herself, but only by using a spoon. So meals are either spoon friendly, or finger meals. Drinking is not a problem, although she did need to be encouraged during the first few months after leaving hospital. She drinks from sip cups, and the type I've purchased for her are from the Tommee Tippee range for children. These are ideal, as they have a non-return valve, and most spillages are avoided.
That's the story so far - where now?
Although I can't fully answer the question, I have made it my mission to help others in a similar situation, both by using my skills as a designer, and my experiences as a carer.
One small project, still undergoing development can be found on another of my blogs here Dementia Day Clock using a Digital Photo Frame