Wednesday 25 March 2015

Alzheimer's Update

At the moment I just feel I need to write something on record as this God awful disease plays out it's dreadful scenario blighting the life of the most precious and special person I have ever had the good fortune to meet.

June Humphries, June Humphries, June Humphries, I hear a thousand times a day as my dear June struggles to know herself let alone me. Trevor......., Trevor........A to Z of almost Everything I hear being mumbled under her breath.

The deterioration in June the past 12 months has been quite alarming. Last Easter I managed to get away for three days on a cycling trip to the Isle of Man with some clubmates and although I had neighbours come in to feed June and give out her nightly medication I felt confident she was safe.
At that time June was still able to shop on occasion, turn the television on and off and make herself a cup of tea on a good day.

Unfortunately June has since become prone to taking midnight hikes, forgetting how to use a knife and fork, falling over, hearing voices, talking gibberish, wearing all her clothes to bed, leaving her food, constant panic attacks, incontinence, temper tantrums and despair! It is all that I have been able to do to get her up in the morning but more often than not I have lost that battle lately.

The past four months have been particularly tough on June with a couple of bouts of hospitalisation after falls and another couple of respite stays in care homes while I was away. The first time I took June into a Shaw Healthcare home she was not happy and was so pleased when I picked her up to take her home. Last month I picked her up to take her home after a two-day stay but June didn't want to come home so I booked her in for another day. This was on the one hand upsetting as June was choosing a solitary life in care over the loving home we shared but on the other hand it also showed me that the time to let June go is not far away.

I decided to take June up to Clumber Park, north of Nottingham, last week but it turned into a bit of a disaster as June spent the whole time in the hotel bed and although I got her up for meals, she just picked at them and even struggled with her new favourite foods of chips and ice cream.

The worst of it is that I still see glimpses of the old June. Today for instance I happen to be running a temperature and June seemed to sense I was at a bit of a low ebb and she came into my office and rubbed my back and lay down on my office bed and said "I'll be good today". I managed to fight back the tears at the irony of June comforting me but it brought it home to me what a terrible affliction this disease is. GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR

And you feel so alone.

Sometimes I get that feeling I used to get soon after my mother died and I kept on thinking I saw her in the street, only with June it is the pretence that she is sound of mind.

I talk to June normally, I know she rarely understands but on occasion she will surprise me. When I see her laying on the floor with shit everywhere or when I have to ring the police when she has gone walkabout in the dead of night it brings it home that I am living in a fool's paradise.

June is not happy, why would she be. June is not well, but who cares, even my own father last Easter on my return from the Isle of Man said to me when I rang him "Does June still have Alzheimer's"!! and at Christmas when I rang him and put him on to June all he could say was "the mean old bugger couldn't even send me a card" To a lesser extent even one member of June's family who June had supported and put up for a couple of years turned away although bless her she did visit June in respite and held her hands up to being weak and selfish.

You see, June is a special person, always has been. She was my first role model. I was a teenager when we met and as she likes to say I was "a bit of a lad". June made me believe I could be anything I wanted to be. She made me believe that my unconventional upbringing was no barrier to my living a normal life. June is the only person I have ever met that has no side to her. She was with me exactly as she was with others i.e. loving and kind. June never had a bad word to say about anyone nor an unkind thought.

June commands respect too. I swear some of my more high profile gravitas friends such as Jeremy Beadle, Magnus Magnusson and Alan Samson loved June more than they liked me, in fact I remember Alan, my former publisher, buying a new suit on one occasion when June was going to join us for lunch. You see that was June. A simple girl from the Welsh Valleys who worked as a shop assistant and domestic but who was every bit a lady.

June's personality was legendary. In recent years she has hosted friends of mine from my sporting clubs but also the likes of Kev Ashman and Chris Hughes from Eggheads, Mark Labbett from the Chase and of course dear Jeremy. She made them all feel special and would invariably cook them egg and chips and was able to hold her own in any conversation as she kept abreast of current affairs and would devour the morning paper from cover to cover.

I am talking as if June has gone, but of course the June the world knew has gone but I still see behind the eyes. I still see the goodness of her soul. I see the struggle for words and thoughts that is driving her insane. I feel her indignity although June could never be undignified.

When I placed her in the homes I felt the staff knew June was a special one. Of course all our loved ones are special but I do make a point of telling people about June. She was a legend as a greengrocer, she was a legend as a butcher's assistant, she was a legend as a factory worker and she was a legend as a domestic, befriending doctors and administrators as well as her fellow workers. ALWAYS smiling, ALWAYS pleasant, ALWAYS kind and ALWAYS a word to encourage or make your day feel that little bit better for meeting her. When June was well, virtually every time I accompanied her to town someone would go out of their way to rush over and say hello to her or tell me how lovely she was.

June is a one-off. She did voluntary work for the League of Friends once she retired and also for the RNIB. Everything she did was done quietly, but earnestly and meticulously. June always went that one step further than others and is quite unique in being universally loved and never having had a falling out with any of her friends or acquaintances. You see June was never a threat to anyone. Direct, plain and simple. Not afraid to speak her mind but always with a smile, a glint in the eye and a warm heart.

I write this as much to remind myself how lucky I have been to have been loved by this great lady and how through all this apparent misery I trust that God will look after June and deliver her safely because she has done God's work all her life and I have witnessed it.