My name is Moira, and I am 59 years old and my husband, Carl, just turned 64. We are part of the millions in a group that no one wants to belong to….Young-Onset Dementia (YOD) partners and caregivers.
A little about our journey:
I think it’s fair to say, he probably was having signs of Young Onset Alzheimer’s as much as five or six years ago. In 2017 he took early retirement from his high stress, high pressure job and I was happy to see him leave the position and assumed in time, he would seek another job. That never happened. He just never seemed to get his “mojo” back. I started documenting and logging strange behaviors in August 2022 because nothing was making sense anymore and hadn’t for a couple of years.
My smart and together husband kept doing strange things.
By November 2023, I had scheduled him to get a Mini Mental during his physical, but he canceled it without telling me….
It took me threatening to leave him for him to accept going to see a neurologist and we did in Feb 2024.
Dr. Lin, the neurologist, after looking at my notes, immediately said he needed to be tested and it was not long after that the diagnosis was clear. He had Mild Cognitive Impairment….at BEST and by July, it was confirmed he had Alzheimer’s.
Let’s talk about Mild Cognitive Impairment as it impacts caregivers.
No one would realize a person has it in a short conversation. Even today, friends and acquaintances think he has slowed down and settled into retirement and is just a quiet nice guy.
It is only by living with a partner where we see the person they are today and see the difference from the person they were.
Getting a diagnosis was, in a strange way, a godsend because it helped me understand, to have patience and to realize I wasn’t crazy AND it wasn’t his fault.
Before, I thought I was going crazy. I questioned “was I imagining things” or kept trying to justify the behavior by saying it was just nothing or he was tired.
With the diagnosis, I could be calmer, more patient and be more present.
What does living with a person with Mild Cognitive Impairment look like?
As an outsider looking in, you wouldn’t know,
As a caregiver, it’s like taking care of a young child.
What has changed?
Constantly having to be aware of his day, schedule and agenda because he will not remember.
It includes keeping track of his appts, did he walk the pup, feed the pup, checking to make sure he took his meds, making sure he ate.
It also includes remembering not to overload him with information because he gets rattled being put on the spot or being asked to process too many sequences of tasks
In layman’s terms, this is because the part of the brain that handles executive function is not functioning as it should – I didn’t understand this before but now I know I can’t ask him to manage to many things at once.
For example: I can’t ask him to do a simple series of tasks like:
Go to the hardware store to get a SodaStream canister
Mail a letter at the post office
And stop by the grocery store to get milk.
He can’t manage to make sense of the sequencing of these tasks. He can do each one individually but can’t put it together to do it.
Other examples:
He “panics” if asked something that he is not prepared for, his DOB, our Address etc.
Routine is important. It is easier to keep our day-to-day routine and only occasionally insert something different.
Because Mild Cognitive Impairment is not immediately obvious, people do not realize the drain day in and day out of constantly worrying about the details – It feels a little like being a first-time parent with a toddler and constantly worried about EVERYTHING…
This is my experience today. It is not unmanageable. My husband can do all the activities of daily living. He is still driving around locally to the places he knows. He still does an amazing job of vacuuming and tidying the house every morning and still does his own laundry and yardwork.
He CANNOT do math, he doesn’t get on his computer anymore or manages troubleshooting the tv if something goes wrong, he can’t remember our zip code or even the password to his computer, even though I have written it on a piece of paper by his computer, he watches YouTube clips and doesn’t seem to be able to tell the difference between AI generated content and real news, he can’t read out loud, his language is more and more simple and basic, he cannot handle the family finances, he cannot call to schedule the HVAC service. He would not be able to plan a vacation, decide where to go for dinner, remember to take our dog to the groomer, notice something is wrong in the house and have a plan to handle it, get to the airport and successfully fly somewhere.
It leaves the caregiver feeling like it is all on them, every last decision. You lose your partner, your sounding board, your person to share life with…. You are constantly on guard. Where is he? When did I last hear from him? Is he lost? Did he forget to do something?
Always on alert, always expecting something bad to happen. Checking my watch, checking his air tag in his car.
This is what Mild Cognitive Impairment/Young-onset Alzheimer’s looks like for the caregiver. On the upside, I am fortunate and grateful that my partner is sweet, gentle and content with a simple and small life. One that is shrinking but if he is content, I am grateful.
