Notes of a Caregiver

It’s been seven years since my father was diagnosed with Alzheimer’s. He was diagnosed with early onset Alz when he was 56. This is a very young age to be diagnosed with such a debilitating disease. The disease affects everyone differently. Some people live long lives after first being diagnosed, slowly losing their mental and physical faculties through the years. Others live only a few months, rapidly losing their memory day to day.

My family and I have been fortunate enough (if you can call it that) to relate to the former. It’s given us time to recognize and prepare for what’s to come. This allows us to make the most of the time with my father. Recently I’ve been taping conversations both audio and video, trying to capture as much as we can to remember who he is rather than what’s to come.

I know that the changes affect my father day to day. You can see if he’s having a good day or bad day as soon as you walk through the door. On the good days he instantly responds and smiles to your presence. Cracking jokes or asking about the people he cares about.
On the bad days, his eyes look lost and agitated. You can sense he’s trying to grasp where he is. There are times when you see depression set in, his face and emotion withdrawn in complete disarray. He’s at a state where he clearly understands he has Alzheimers. When his emotions kick in and are confused by his memories, he’ll often have fits and arguments, trying to reconcile his memory with reality. After the episode he realizes what he’s done and falls into a bit of sadness, knowing he’s emotionally hurting my mother when he doesn’t mean to. It’s hard on him, but I know it’s harder on my mother who is the primary caregiver.

She has come a long way to accept what’s going on, but the daily stresses of my dad’s incessant questions, bouts of anger and confusion, and simple tasks of caregiving are taking a toll. My brother, wife and I take turns checking in on him daily, but there are times when my mother is to afraid to burden or ask for our help. It’s frustrating when my dad’s own brothers and sisters live their own lives not caring enough to check in, or watch or even know how he’s doing. It angers me so much that they treat him like he’s already gone. Most of them rarely visit. Only one truly comes around often enough showing compassion. I’ve distanced myself from my father’s relatives because of it. I hate that my mom has to reach out to them. They should take proactive steps to spend time with their brother. Yet they selfishly focus on their own lives. This sounds like another post, and it most likely will be. For now I’m venting.

We take his moments day to day, more so than in the past. We know he has an off day when his face changes. There are also moments now, when we see part of the depression set in. We try to keep him in positive spirits, and for the most part, he tries to keep himself in positive spirits when he forgets things.