Early Onset Alzheimer's Caregiving - The Diagnosis

I can’t believe how hard it is to write about this stuff. Most of the rest of my entries will be for caregivers, of course. But I had to share our background in the previous post.

In the first year of caregiving, I had so many feelings and emotions going on; Grief, anger, sadness, hopelessness, irritation, frustration, loneliness. Of all the things that I was feeling, the hopelessness was probably the hardest to come to terms with.

With early onset Alzheimer’s, which is the only dementia I will write about, because that’s what my experience is in, there is no known timeline. There are general stages that mark the progression, but even those vary from person to person, depending on where the atrophy in the brain is and how the person responds to that.

Dave was diagnosed shortly after his 59th birthday, but he had shown signs of cognitive impairment for 2-3 years prior. But, he hid it well, as did his brother before him. Right away, both the neuropsychologist and his general doctor, agreed he was at the moderate stage and that he shouldn’t be driving on the road, using power tools like saws, or guns. It was up to me, his wife and caregiver, to enforce those things and it was very difficult.
He had inadvertently locked our gun safe and didn’t know the combination, so that was out of the way. But, I had to keep track of keys, in case he forgot he wasn’t supposed to drive to town. And, I had to take over tasks on our acreage that required power tools or hire someone to come over.
He was understandably irritated that the doctors thought he shouldn’t drive, and I took the brunt of that decision. He never was uncontrollably angry, but he was angry at me. I mean, who else would you be angry at, other than the person who appeared to be taking all of your independence away? It’s logical, and completely unfair.
And for me, because I knew there was nothing Dave could do about the disease and how it was making him act, I had to stay calm, not snap back when he shot me scowls or muttered at me under his breath. And for the next 5 months, I left the house alone only 4 times. He lost his independence, so many of the things he did from day to day, were activities no longer “allowed.” And, I lost my independence too. I could no longer plan I errands in town, while he was cutting wood or mowing, for instance.
During those first few months, I was busy though, with what seems mountains of paperwork to prepare myself for the coming months or years. There is no way of knowing how fast the disease will progress or how the person will respond to the progression.
Because I spent a lot of time figuring out what I had to get done and prepared while he was able to sign forms, I’ve put that together in a pdf that you can download, if it would be helpful to you. Disclaimer, I’m not a lawyer or accountant or therapist. I’m just living the life of a full-time caregiver and sharing what I’ve learned from my experience, which could be totally different than your journey, if you are also caregiving.

Until next time.
Anne