Thirteen years into Jan's illness, it still goes on, that need to battle.
Right from the start I have had to fight for her interests[I diagnosed her 5 years before the medical fraternity but they called me daft when I first told them what I believed was the problem] up until - well, as far as I can see into the future.
I battled for her as we explored alternative reasons for her symptoms. We went the route: GP, heart specialist, brain specialist, psychiatrist, psychologist, etc. Most was privately funded as I had cover for Jan on my work healthcare, but the only one I felt was not just going through the motions [and running with the money] was NHS - St George's in London [they at least were superbly thorough and finally told me it could NOT be what they were testing for]. As soon as there was a hint of what it might be, the private healthcare dropped us. Until the diagnosis was 100% I fought to continue private tests.
I pushed for MRI, cat, and a host of other scans, ECGs, EEGs, ambulatory heart monitors, all three of the main Alzheimer's medications Ebixa, Aricept, Reminyl. I fought to get day care [they threw us out], help looking after her at home [never cracked that one], Disability Living Allowance [got it for a short while].
On assessment I ensured I was there every day to support her [this was almost the most difficult time of all for her as it was the first time that a seemingly mostly ok young woman was suddenly pushed into the company of a group of much older, fairly disturbed people - while I 'just left her there' [her words]]
When it was taken out of my hands and she had to go into full time care, she was moved to what has turned out to be a wonderful home - but the assessment centre didn't tell the home of her needs, then immediately filled her place so she couldn't be returned to them. I had to explain to the home that Jan couldn't share a room or sleep in a bed and needed 1-1 care [none of which the home had been told]. They sorted it immediately, but with looks of horror. I continue to visit on a daily basis 30 months later to ensure that she gets the company she deserves. Only recently did I stop doing all her washing at home. Now at least I have help in fighting her cause - the home is fantastic in that, but we both have to fight bureaucracy and budgets to cope with Jan's needs.
I wouldn't have done any differently, but as I look back, I really don't know where I found the ability or energy. I'm so glad I did!
The only plus point of being with an Early Onset patient is that I myself am relatively young and have been angry enough [about the condition, about some doctors, about the loss of our life together, about the slowness of diagnosis, about the feeling of total futility, about the inevitable outcome, about so many other things] to pull out all the stops to do my best for my wife.
I can't imagine what it would have been like to be twenty years older and to have all that, but also to be unable to do so many things to help. Or not to be able to visit her every day. Or....etc
We're not out of it yet of course, and I have no idea how long it will go on, but I will keep on battling for her.
For those who are at an earlier stage in the process, I can only say that it is so worth while, even though the depression and weariness will set in at times. Besides helping the most important person, you will also grow immensely yourself. It does stop getting worse, at a certain point, though that's not to say it will get better. Close intervention WILL ensure that your loved one will get a better time and treatment.
I won a small battle against the results of the disease yesterday and for the first time in many months, felt a weight drop from my shoulders. You can win small battles even if the outcome of the war is inevitable. A small battle for you can be a major one for the patient.
By the way, one thing I have found is that people now treat me differently. Perhaps it is because I have changed through the experience, perhaps they think 'but for the grace...'.
Good luck to everyone.
P.S. always managed to miss that speeding ticket, though it must have been sheer luck...