Suspicious of dementia in a parent? start here
Visiting the beach last week- Connecticut in the winter. Not pictured, my son just off camera yelling “it looks like the rocks barfed!”.
A friend texted me this week. She asked for advice as she was starting to suspect that something was wrong with her mother-in-law (MIL). There were some signs of memory loss/confusion - her MIL wasn’t catching on to jokes, she got turned around when they went for a walk in a new neighborhood, and she was repeating herself. The friend was freaking out.
She asked for my advice on what to do next and we talked about some logistics. (If you want the logistics, they are at the bottom of this page). I floated above, staying in logistics mode where it’s cold, fact based and step-wise.
But here is what I wanted to say:
I am so sorry... so sorry at what might come for your family. I remember that stage- that sinking feeling when you realize that your parent is not exactly the same as the last time you were with them. For me, Mom’s decline was more obvious because when Mom was first sick, she lived 5 hours away from me. I went a month in between visits sometimes. Once, when I came back after a month’s absence, the fridge was still full of some of the same food from the previous month. And Mom was still eating it. That broke my heart then the way it breaks my heart now just to type it. I thought we could vitamin, exercise, and hope our way out of a dementia diagnosis. I thought for SURE it would be a vitamin deficiency, or grief at losing my Dad. Because the true awfulness of Alzheimer’s couldn’t be my Mom’s fate. When her primary doctor told us to stop pushing for a diagnosis and that Mom was just stressed about losing Dad… I was very interested in believing that. She was GOOD, and GOOD people don’t get terrible things. That’s the Catholic math I had grown up with and I stood by it.
A picture of me trying to do Catholic math as a lapsed Catholic. Just kidding, I’m just taking at walk at Heinz park in Philly- our favorite city escape where you can see a giant blue heron and also a giant airplane at the same time.
Mom’s diagnosis of “dementia- Alzheimer’s type” took months and I am so sorry that the answers you need will likely take months to come as well. Don’t be patient. Ask for appointments and specialists and imaging if it helps you get an answer. Call your loved one’s doctor on your own and tell them what you are worried about. Write down your specific concerns and why they matter “Mom forgot where the spoons are kept today and they have been in the same place for 25 years”. If you don’t live with your parent, ask their friends and family if they have seen anything. Ask the neighbors. They might know more than you think- like ours did.
What I would want to say is that I am so sorry that there aren’t effective treatments to stop this. I’m so sorry that the cost to care for someone is financially draining and that resources will not be equitably distributed among those that need it. I’m so sorry that in the blinding grief you will be forced to think about logistics and future planning. That you might end up paying bills for this person, thinking you are fine and then crying later into the MIND Diet salad you are eating in a desperate attempt to not get this disease. I wish that my Mom’s terrible disease process would have then protected anyone else from getting dementia. Probably one of the saddest things I can think of is that the memory care facility likely filled the room that Mom died in just a day or so later. There would be another family to know the sadness that we knew there. Because losing someone to dementia doesn’t feel natural, or like the circle of life to me- it doesn’t feel like the progression of life that we all wanted for our families/ourselves.
This was Superbowl Sunday dinner which I know doesn’t really scream “party!”. It kind of just gently says “leafy veggies” and “leftover cabbage”. At least there were a few cookies? There’s three. There’s only 3 cookies and there are 4 of us. This is why you shouldn’t read the MIND diet information.
So my advice is this. Take some time to be really, gut wrenchingly sad. Then get to work.
Start with your loved one’s primary care doctor and go from there. Yes, you can call your parent’s primary care doctor. They might not be able to give you medical information but you can tell them your concerns.
Start therapy for you and if you are married, for you and your partner.
Talk to your siblings if you have them, and get on the same page. Get the Hero Universe Ap as quickly as you can! It will unite you as a care team
If you can afford it, hire a financial planner for your parent- someone that can handle the complicated planning involved in getting care and paying for it.
You can find more about logistics here, advice on visiting someone with dementia here, and here’s how we got a diagnosis.
You don’t “got this” but you can make a team that will help you and the person you love.