(Originally posted in Facebook on February 4, 2019)
A new kind of normal starts long before the doctor says those words . . . “early onset dementia.” I knew the words were coming. I had known it for a long time. Even though my husband, M, has insisted all along that he’s fine and he feels fine and he’s not doing anything wrong.
I knew.
We had started the long procession of doctor’s appointments over a year ago – one after another. It really is the slowest process in the world, trying to get to the bottom of a diagnosis like this. M has gone through test after test and scan after scan. It’s almost sad when you start wishing for a tumor. Cancer is a diagnosis you can understand. A disease you feel as though you can fight. Dementia – not so much.
The week before we went back to the neurologist’s office to receive the results of the PET scan, M had emphatically stated he would undergo no more testing. He had had enough.
And I understood.
I would support whatever decision he made. So when we sat there in the doctor’s office and he said those horrible words – early onset dementia – he also said he wanted to run (of course!!) one more test to rule out any rogue cancer or bacteria or virus that JUST MIGHT be causing these symptoms.
Do I think there might be a cancer, virus or bacteria causing the symptoms that have been getting progressively worse, particularly over the last 18 months? No. But how can I say “no” when it’s my husband’s life at stake? I was prepared for M to say no, but he agreed to the test – a spinal tap, if you can believe it. So now we have to be scheduled for a inpatient hospital procedure – again, hurry up and wait – and throw money we don’t have at this test.
I can remember being in a car accident years ago and thinking “is this really happening?” as my car was being crushed and my head hit the windshield. That’s exactly the way I’ve been feeling, ever since we left the doctor’s office. How could my 56 year old husband have dementia? Is this really happening? I keep waiting for someone to tell me there’s been a mistake – that all the signs and symptoms I’ve seen have been indications of something completely different – something we can cure with a shot or a pill.
Mostly, I just feel sad. And cheated.