From the day that our child is diagnosed the 'symptoms' begin. We mourn their death over and over again. Why me? How long? Can I do this? How can I cope? Many, many thoughts go through our heads; these sometimes fade through time and experience but never really go away. As the disease progresses we seem to 'alienate' ourselves from others, not only do our children become 'different' we become 'different' ourselves. Whether it is due to depression or just circumstances, we tend to feel all alone. The only people that can possibly understand us are others who are in the same boat; we dont have to explain ourselves to each other,we know.
It is hard to explain to a professional the pressures of caregiving. I remember once saying to our nurse "Michael says 'Dad, dad, dad, dad, dad, dad' over and over again and it really gets to me." She told me to ignore him, he would soon stop. I took my video camera and recorded him in a room full of people; it was New Years Day 2006.In a period of 1 hour and 30 minutes he said "Dad" nearly 1400 times; it worked out around once every 4 seconds. Not only do parents have to be alert to seizures, chokes, falls, behavioural problems etc, but they are also forced into giving attention the whole time even when the kid is 'relatively' healthy.
I can remember when we got some respite, I couldn't sleep; I had been that used to going to bed with one ear open that I was still listening for him. I couldn't relax completely as I was wondering if they were doing things right. One small change to his routine and there would be 'fireworks.' I still felt responsible for him even though he wasn't here. We also have to organise the day to day care for our children, e.g Arrange appointments for Consultants, Neurologists, Speech and language therapists, Physios, Social workers, Dieticians, Teachers, Occupational therapists ... the list is endless, but necessary.
I remember taking Michael to the hospital to have his gastrostomy tube fitted; they told me to go back the next day to bring him home. I said that there was no chance that he was coming home the day that his tube was fitted. I was told that my nurse had been in contact with the hospital and that I would be able to cope. I left the hospital desperate to find out why my nurse had said this, how could I possibly cope, I was struggling without a gastrostomy being recently fitted! When I visited the hospital the next day it was a completely different story; they had just experienced Michael for one full day. The Sister of the ward (Head nurse) said to me "Michael can stay here as long as you see fit. Two of my nurses were absolutely exhausted after an eight hour shift, how do you possibly manage?". At last someone knew what it was like.
We were very lucky to have some fantastic carers that helped us with Michael. Maybe they were only there for a couple of hours a day, or even a couple of hours a week, but they were truly dedicated; they are still good friends yet. I could see sometimes how much fun that they had watching him for a couple of hours. I could also see how mentally and physically exhausted that they could be. It was either the best or the worst two hours that they had that day, depending on how he was.
Social gatherings also became a problem due to epilepsy. Just as everyone would be having a great time, the more the alcohol flowed, the more people would be up at Michael saying "Hi Michael, give us a hug and a kiss" which sounds great. In reality it was a recipe for disaster. He got more and more excited, almost like watching a kettle come to the boil. If I let it go too far then 'SEIZURE!' I often had to take him away from the party, making myself 'the bad one' not just with him, but with the others that thought that I was being cruel. I wasn't being cruel, JHD was!
So, at the end of the day, it is not just the affected person that has 'symtoms', the carer can end up depressed (often), exhausted (very often), and feel all alone and different from others. These are just a few of my thoughts, but I know that they are common amongst the JHD community. There is only one solution, CURE HD!