Voices of Alzheimer’s: Patrick and His Mother

When Patrick’s mother was diagnosed with Early-onset Alzheimer’s Disease eight years ago at the age of 64, Patrick paused his career in academia and moved home to be her primary caregiver. 

Over the years, Patrick’s roles as son and caregiver have blended, though keeping them separate is important to how he interacts with his mother.  This is a major challenge for many family caregivers.  Patrick explained about his mother, “She always viewed herself as independent and strong. Even now that her strength and independence are diminishing, she still clings to that self-image. That is heartening, in one sense, but heart breaking in another. She won’t admit that she has memory problems and will not accept the idea that I am her caregiver. So we maintain a façade that I’m just visiting for a while, between jobs. However the moments do come when it’s obvious that I’m in charge and that she needs me to take care of the household. When it comes to that, she turns into a kitten and treats me like I’m not her son anymore – just a big helpful man. I’m having to be flexible in the way I see my role. I basically let her determine it. I have the advantage in knowing that this is a temporary situation and that my role will return to a comfortable state eventually.

“Two of the things my mom always valued in me was intelligence and humor. It was how we related. We shared an appreciation for wit – we could laugh together, and it made me feel close to her. It’s painful for me to watch her search for the right word, especially when I can tell that she really wants to contribute a snappy response the way she did before.

“I’ve become more grim and dour but I don’t necessarily see that as a bad thing. In the past I have tried my best to avoid ‘ugly’ emotions, so it’s kind of a relief to be open about them now. I do feel my joie de vivre has diminished and I understand that situational depression may be normal for someone in my position, so I trust that it will return after this situation is over. It is harder for me to laugh at myself and to accept other peoples’ bad behavior, and yet I have a deeper understanding of my spirituality and I enjoy a more profound feeling of connection with other people. I also feel I have gained a longer view of my life than I had before – more patience – and I feel more comfortable relying on faith. Those qualities may have arisen eventually anyway, but I do believe my mother has been teaching me a lot about compassion.

“I guess the best way to explain anything like this would be by analogy. I did, actually come up with one recently because I’ve been reading C.S. Forester’ Hornblower books. If you haven’t read them, they are about an English sailor during the Napoleonic wars who, as the series progresses, becomes a ship captain. As I read his adventures I get an idea about what it must have been like to maintain a sea-going vessel during those times. I’m not saying that I am like a ship captain – it’s more like I shift my roles from sailor to sailor as the conditions change. This analogy works well because I have actually assembled caregiving team much like a ship’s crew. I couldn’t do this whole job if I was acting alone. I can only perform the task at hand that I’ve trained for. If I can’t do it, I find someone who can.”

For caregivers in similar situations, Patrick offered this advice, “Don’t try to be the model caregiver. Just do what you can and ask for help.”

Patrick and his mother, 2011

Through all the stress, heartbreak, and doubt, Patrick and his mother still share moments of laughter. 

“We both appreciate cuteness and absurdity, and I have found the best source for both of those qualities is by watching dogs playing. That is when spontaneous laughter erupts from both of us.”