Being a doctor who is also a daughter has its privileges. I can navigate the system on behalf of my parents. I can advocate on their behalf and ask for tests and referrals. I can attend appointments and understand what is being discussed. I can find out results before they do.
It is fraught with disadvantage as well. With their permission, I am privy to tests results before they are. I understand what their diagnoses mean and if I don’t, I know trusted resources to educate myself. I understand in general terms what “illness trajectory” means. Specifically, I have seen what illness trajectories look like. I also know what the end may look like.
I am the one my family looks to for advice and comfort. I have to be strong and composed. I can’t let them see that I’m worried.
My brother and I had a long talk the other day about our parents. He has positioned himself to be their power of attorney for finances and I am their power of attorney for personal care. In the past year, it has become evident that we may need to start exercising our roles. I can’t tell you how sad that makes me.
Growing up, my father was larger than life. He was a tall, formidable man with a deep voice but he was for all intents and purposes, a gentle giant.
Over the past year or so he’s become impatient, occasionally verbally aggressive toward my mom and is forgetting things. He was diagnosed with mild cognitive impairment last fall but his condition seems to have deteriorated in the last 3 months. He has a much shorter fuse now and asks my mom to repeat things several times a day. He denies feeling depressed but we all think he is. Thankfully his family doctor suggested a trial of a low dose antidepressant and he actually agreed.
He will be having an brain scan soon. I fear it will be normal. Why? Because the thought of watching him continue down the road of dementia is heartbreaking. It would frankly be much easier if he was diagnosed with a brain tumor. I don’t think I could bear the day he forgets his grandchildren and then me. I don’t think I can watch him become aggressive and angry and frightened at his memory loss. I see it already happening with my maternal grandmother.
And there’s the kicker: dementia on both sides of my family? What does that mean for my brother and me? Are we destined for the same end?
We talked about all of it. Dad won’t want to go into a nursing home when the time comes. Will I have to have him declared incompetent and take over as POA? If dad moves into a nursing home, mom won’t be able to stay in the condo; will she live with me or my brother or alone in an apartment? How long are we going to have to watch him deteriorate? He would never want to live like that. I certainly wouldn’t.