I've said a few times that I'm a bit of an anorak about keeping records of Jan's decline. Well I have been reviewing some of them today in preparation for something I've been invited to be involved in tomorrow, and I turned up the following:
From the time that Jan, at 52, first showed 'real' symptoms of fainting frequently [there had been hints before but we had not twigged].....
...it took 18 different doctors eight years, on 57 visits overall [excluding some tests and memory tests], to get to the final diagnosis.
...Jan had EEG normal, EEG sleep deprived, ECG, ambulatory heart monitor, two MRI, CAT scan plus memory tests
..they explored menopause, sugar levels, diet, heart, psychiatry, psychology, alcohol [in desperation], depression
...there were 3 hospital assessments, Jan had what they thought was a cardiac arrest when having the ambulatory heart monitor fitted [what I called a faint because I was so used to seeing them] at the hospital and they got me to take her away asap because they couldn't handle it, she was admitted once because she used the wrong contact lens fluid in her eye [we just thought it was happenstance at the time]
And when I looked at my notes for the final two years she was at home, I can't believe I managed to keep on caring for her as we were both cracking up.
When I look back, I realise that Jan is now in the best place she could be - the care home, given her particular descent with this horrible disease. Won't be the case for everyone, and I wish I could have carried on at home, but when I see the notes of her distress and disability, I weep.
From the time that Jan, at 52, first showed 'real' symptoms of fainting frequently [there had been hints before but we had not twigged].....
...it took 18 different doctors eight years, on 57 visits overall [excluding some tests and memory tests], to get to the final diagnosis.
...Jan had EEG normal, EEG sleep deprived, ECG, ambulatory heart monitor, two MRI, CAT scan plus memory tests
..they explored menopause, sugar levels, diet, heart, psychiatry, psychology, alcohol [in desperation], depression
...there were 3 hospital assessments, Jan had what they thought was a cardiac arrest when having the ambulatory heart monitor fitted [what I called a faint because I was so used to seeing them] at the hospital and they got me to take her away asap because they couldn't handle it, she was admitted once because she used the wrong contact lens fluid in her eye [we just thought it was happenstance at the time]
And when I looked at my notes for the final two years she was at home, I can't believe I managed to keep on caring for her as we were both cracking up.
When I look back, I realise that Jan is now in the best place she could be - the care home, given her particular descent with this horrible disease. Won't be the case for everyone, and I wish I could have carried on at home, but when I see the notes of her distress and disability, I weep.