Editor’s note: I originally published this post in 2016. I still hear from readers who say it has helped them, so wanted to make sure to keep it alive on Substack.
Though the words feel foreign to me now, I wrote this email to the Cleveland Clinic in March of 2008:
Hello,
My father is 66 years old and has had progressive memory loss/cognitive impairment over the last 5 years. He has seen a private neurologist, but as his condition is worsening, we are looking for a multidisciplinary memory disorders clinic. We would like the following services: + a neurologic/neuropsychiatric testing to establish a diagnosis and provide treatment recs. + social work to provide resources for our family for support and care planning geropsychology for counseling for my father/mother.
I searched your neurology website and found many comprehensive centers, but did not see one for dementia/memory disorders. Does the Cleveland Clinic provide these services in a coordinated environment?
Please contact me via email or phone at 415–555-xxxx if you have any questions. Thank you in advance for your help.
This isn’t about my father, though. Not exactly. And it’s not about his death from Alzheimer’s disease in November of 2013, five years after this email was written.
Observations about the early stages of Alzheimers
This is for those of you who are seeing the signs of memory loss or dementia in your parents. In the past two weeks alone, I’ve spoken with three different friends in their 30s and 40s who have described their parents or their in-laws’ confusing behavior, memory loss, and possible dementia.
I’m using examples taken from my own experience and my mistakes. I hope my stumbling will help you find your own path a little more easily.
I thought he was just lazy.
Before he was diagnosed with Alzheimer’s, it seemed like my father just didn’t want to do very much. I remember getting up the courage to talk to him about it on President’s Day of 2004. I called and asked him what was wrong. I asked him to “come back.” I remember sitting in the parking lot of a grocery store in San Francisco, pleading with him to be with us. I wish I could go sit with myself from that time and let myself know that there was nothing he could do to change his behavior.
What I know now: If your parent seems like they are working too much, or playing too much, or drinking too much all of the sudden in their late 60s…it’s not necessarily that they are depressed or choosing not to deal with things. It could be a sign of memory loss. Maybe they’re sticking with familiar patterns but unable to modulate the way they used to. (As my brother said, “To me, Dad’s early stage dementia behavior was only an exaggerated version of his regular self.”)
I spent years thinking my Dad was lazy. I regret that now.
He no longer liked group events.
My brother Matt, who lived close to my parents during this early stage, said to me, “The most telling sign of early stage dementia, for me, was Dad’s inability to mingle in groups.” At times we wondered if this was a hearing issue — was he unable to hear what was being said when there was ambient noise?
One of the most amazing things about my Dad, even at this time, is how jovial he always was. His humor and spirit weren’t diminished by what he was dealing with, but that also could lead to confusion for us. Why wasn’t he his usual self?
What I know now: As hard it is on a child to cope with a parent with dementia, the parent with dementia is coping, too.
I believed an official diagnosis would change things.
I spent years trying to get my Dad neuropsychological testing. I figured out testing was the place to start by talking with a trusted friend who, luckily enough, was a doctor. I sent her this note from the middle of my impatience in March of 2007:
It’s so fucking frustrating to me that everything is on this constant excuse, “We can’t do that because we are going to SC” or “We only have two months in Ohio so we can’t do it” — just a bunch of excuses as far as I’m concerned, but I think that’s how [my parents] live the way they do.
Her brilliant and measured response:
I can understand the frustration with the nomadic parents. It’s hard to know whether people put things off b.c. it isn’t a priority or b.c. they don’t want to face up to them. In this case, I certainly don’t think it will matter to postpone the testing as it’s more likely to give a baseline assessment than change how things are managed right now.
What I know now: If you feel frustrated and want answers, I feel you. Just know that your quest for a diagnosis may be for your own peace of mind more than for the good of your parent (or your supporting/caregiving parent, if you have one). It’s great to understand your parent’s mental baseline, but ultimately, did it matter that my father was diagnosed with mild cognitive impairment? I was so focused on taking “the right steps” that I couldn’t hang out with where we were as a family at the time. I just wanted action.
Remember that everyone in the family, including you, is adjusting to this change at different speeds. You know this intellectually in the early stages, but you’ll probably experience it viscerally in the next couple of years. You’re just starting this process of letting go of your parent (and I know that even reading that sentence might hurt, and I’m sorry to be saying it to you). Everyone reacts to the loss differently. Throw a wildcard like un/diagnosed dementia into the mix and then you have heartbreak mixed with a shared project management situation going on. There are no pointers I can give to tell you how to do this the right way. It differs greatly based on your resources — more money and time is better — and location.
I acted weird.
When I would go home to see my Dad, I was tense. I didn’t know how to avoid asking him questions. I felt like I did everything wrong. And I was having so many different emotions at once. I didn’t have a sense of how to handle them. I had always been so close to my Dad, but I wasn’t equipped to relate to him in this new way. My daughter, who was 3 years old when she last saw my Dad, seemed to understand dementia a lot better than I did.
What I know now: If I were doing it over, I’d take lessons on hanging out from kids. My toddler daughter knew how to be in the moment with ease. When her grandpa would get confused, she’d just reintroduce herself. “I’m Alice.”
There’s no one-size-fits-all when it comes to support.
I wanted to find information and support in the early stages of my Dad’s diagnosis of moderate dementia. I found some support group for Alzheimers caregivers at a hospital in SF. It was all wrong. Just like that sentence.
What I know now: I really wasn’t comforted by hearing how I was supposed to appreciate the new person that dementia gave me. Other people might be, though. If this post isn’t helping you close it right now and forget you ever read it. Ditto with how people respond to news of your parent’s sickness. Close, delete, and forget the responses from people that don’t fit who you are. Find your people, and stick to them.
Something else that can help.
Think about recording a StoryCorps interview with your parent, either in person in the StoryCorps mobile or with the app.
The Memory Loss Initiative was particularly great for me. I did free sessions with both of my parents.
I’m painfully aware of how little there is in this post.
I’m giving you scraps, really. But it’s more than I had when I set out on my journey.
I’m sorry that you are facing this.
I know how confusing this all is.
I hope that you don’t feel alone.
To make my heart swell a little, make a donation of any size to the Cure Alzheimer’s Fund in Rodney Arthur’s name.