Probably for the last time though.
I do like the new forum. It's been quite a while since I shared my thoughts on the Parkinson's forum, I've had too many things to deal with and I needed to put my own mind in order before getting some of my thoughts down. This isn't the complete story as many of you carers of Parkinson's sufferers will understand. It's just a concise account of many years.
Over 15 years ago my wife, Christine, was diagnosed with Parkinson's, although in hindsight it had been undiagnosed for several more years prior to that. At the time she refused to accept the diagnosis because of the lack of what she thought of as obvious Parkinson's symptoms, but, eventually the disease began to make its presence felt.
For me, the worst part was the personality change. we had been warned that there would be one but that was it, there was no other information about what the change might entail. The result was that I was totally unprepared for the problems that beset her and had no idea how to deal with them when they came.
My only knowledge of this illness came from my father who also had it, but hand tremors and a bit of weight loss were the only symptoms I saw, so that comprised my only knowledge of this devastating disease, and nobody advised us otherwise. We were offered no counselling at all.
She had been suffering from a stomach ailment that nobody could find the reason for. Ironically, it was during the investigation of this ailment that the doctor who was treating her suddenly realised that it could be Parkinson's and sent her to a specialist. The stomach problem was eventually diagnosed as being due to severe depression. Over the course of the illness the main symptoms of depression changed focus several times causing me great confusion.
First there was the awful staring. Her day would consist of lying on the settee all day staring at the wall.
Then a change occurred and she wouldn't let me bathe her ("I would if I felt well enough" was always her reason for not doing anything, but she never did feel well enough), and she went several weeks before I put my foot down over it. I was afraid of her catching an infection. All this was contrary to the Christine that I knew, she was always fastidiously clean.
Then came another change and I wasn't able to get her out of bed until around five in the evening. Not going out, not eating properly, no interest in anything were other symptoms and I had trouble dealing with all of them.
The insomnia and audio and visual hallucinations, caused by the medication, really disrupted us. They got so bad that she elected to sleep on the settee to let me get a few hours sleep before going to work. However, the hallucinations got so terrifying for her, I had to get what sleep I could in the chair next to her to reassure and comfort her.
The Parkinson's anxiety tore me in two. She would beg me not to go to work and leave her alone because she was frightened, but she could never say why and I was pulled between wanting to stay and comfort her, and earning enough to pay the rent.
Then came the strange leg behaviour. She was looking out of an upstairs window when she suddenly began running backwards across the room, she couldn't control her legs. Fortunately she hit the doorframe and that knocked her over. I say fortunately because if she hadn't collided with the frame, she would most likely have continued out onto the landing and fallen backwards down the stairs.
She spent the next years in and out of five different hospitals, because the anti depressant drugs never worked for her. Twice we nearly lost her due to life threatening weight loss as she wouldn't eat enough to maintain her body weight which dropped to six stones at her worst. It was at this point that I was convinced I was going to lose her.
The only thing that pulled her round a little bit was ECT and, for a brief period I would have the old Christine back and she would gain a little weight, but it was short lived before she began sinking back again. Eventually she was put on a maintenance treatment of ECT, twice a week and then once a week until that too began to lose its effectiveness and eventually stopped working altogether.
All this left me bewildered, feeling helpless, baffled and frustrated and I've never felt so alone and isolated in all my life.
It wasn't until the latter stages of her life that I found that there was a carer's group that I could have joined to try to get some answers and support but it was too late by then.
Up until then I had no support whatsoever. I got her dressed in the morning and put her to bed at night, washed her, bathed her, toileted her, clipped her nails, cut her hair, cooked and washed for her, shopped for clothes and took her to every hospital/doctors/consultant/clinic/health centre in our local area.
The funny thing about all this is that I got a strange satisfaction in doing all this for her, on some level it seemed to fulfil me but I was very glad when retirement came as I was getting exhausted.
I'm not seeking plaudits for this, I only did what anyone would do for someone they loved and cared for.
Then her legs gave out and she had a fall that resulted in hospitalisation and Social Services insisted that she go into care, and I was very relieved that the responsibility for that decision had been taken away from me.
I found a nursing home 5 minutes walk away from where we lived so I was able to sit with her two or three times a day, although the third party top up plus extra fees was a great drain on our finances.
A good thing was that I could take our lunatic of a dog in to see her occasionally, that always put a smile on her face.
Sadly, earlier this year Christine lost her fight for life. She had spent the last 18 months lying in the same prone position with a tube, inserted through her stomach wall to feed her through. Unfortunately she got into an overflow situation and some feed entered her lungs causing pneumonia.
At 03:30 on the morning of May 4th I got the phone call that I had been expecting and dreading for at least 2 years. When the nurses checked her during the night they saw that she was ill and called an ambulance to take her to hospital.
Together with her daughter and her son, I was with her all day and elected to stay the night with her. I almost didn't because it never penetrated my brain that she wouldn't come out of there alive.
At 2315 I was alerted by a change in her breathing. The horrible, bubbling rattle of her breaths quietened down and they became fewer and with longer gaps between them, until they stopped altogether.
That night two of us died. I lost the love of my life, the woman I loved and whose care became my entire reason for being for over 15 years. It's a much overused phrase but Christine was my soul mate and then, suddenly, she was gone and to this day the pain of that loss has not lessened. It's as if someone has sucked all the happiness out of my life. All the colour has gone and there are only shades of grey left to fill the massive hole where she used to be. For so long my entire reason for being was to care for her and that had been taken away.
The frightening thing is what her death did to my self image. I've worked at some of the most dangerous jobs, in the most horrific conditions on this earth and always considered myself to be mentally tough and in complete control of my emotions. Then, all of a sudden, I find that I'm not as tough as I thought I was and that my emotions were, in fact, controlling me.
All I can say is thank whatever God you may pray to that I have a total idiot of a Jack Russell terrier. He has kept me sane and on track. No matter how much I wanted to sit at home and feel miserable, he has to go out and that gets me out of the house and stops me moping, and his antics make me smile, as they did Christine.
For a couple of weeks after her death I was a complete emotional wreck. I couldn't even speak at the funeral, because I knew I'd break down and start crying again.
Oddly, the hardest thing to deal with from my point of view was the sympathy offered by others. A word, a touch and I'd start weeping again and I hate for people to see me vulnerable because I was raised in a time when you never showed your emotions, because it was seen as a weakness.
That, however is not the end of the story, two things happened. The first involved a cactus plant that always flowered at Christmas. We had this for several years and, while it was flowering, I kept it on the window ledge of Christine's room because she loved flowers. This Christmas it didn't flower so I brought it home. Two days after her death it began to put out its flowers and then, after several days, the plant died.
The second thing was that I used to take Christine in her wheelchair to a quiet, isolated part of a local park, where we would sit and listen to the birds singing, look at the wild flowers and watch the butterflies that she loved to see fluttering about.
After her death I scattered her ashes in that part of the park. There are probably a hundred laws against it but it keeps her close to me so I don't really care.
One day I was sat there and feeling rather sad and sorry for myself when, seemingly out of nowhere, a Small White butterfly appeared and fluttered over the area where the ashes were scattered. I watched it for a while until I felt a bit happier and then continued my walk. What I did notice was that wherever I went that day, there was a Small White with me although there hadn't been any out up until that day. Two even entered my home and attached themselves to the ceiling of the box room, and they are still there today. In the years that I've lived there, that has never happened before. Now whenever I see one I think of Christine.
It is, of course, only too easy in my situation to look for meanings where none really exist but I find comfort in this.
I like to think, that on some level, Christine's spirit is watching over me and the long, stressful and emotional journey that we undertook together somehow forged a link between us that even death could not sever.
In all the indignities that Parkinson's inflicted on Christine over the years, the one thing that stands out was that she never once complained or asked “Why me?” and that, to me, speaks volumes about the woman.