He has Alzheimer’s Disease?

If you are a caregiver, what was your first reaction on hearing your loved one had Alzheimer’s disease?

Shock is a common first reaction, especially if you haven’t been living with or seeing the person on a regular basis. This is the reaction I got most frequently from family or friends, and I think it might be the predominant response when the person has younger onset Alzheimer’s disease. It was hard to know, as a caregiver, how to counter-react to someone’s shock. “Yes, I know! I was blind-sided by the diagnosis, too!”

Disbelief seems to go hand-in-hand with shock, but if the disbelief persists, it can have a really detrimental effect on the whole situation. I have encountered patients and friends who have told family members about their loved one’s new diagnosis of dementia, but are met with a host of reasons why they aren’t believed. Blame can fall on the caregiver who is sharing the diagnosis. Often, they are accused of over-reacting to what the doubter views as normal aging. If that doubt continues to persist, it can cause profound isolation for the caregiver.

Granted, someone who is not living with an affected person does not have the experience of day-to-day encounters with memory loss. My own mother-in-law, whom we saw frequently as she lived just ten minutes from us, said, on hearing of her son’s Alzheimer’s disease diagnosis, “But you seem exactly the same to me, Harvey!”

For myself, my immediate reaction, when I had the first hint that something was wrong with Harvey’s cognition, was absolute terror! What would it mean for him, for me, for us as a couple, for us as a family? It was horrifying to contemplate!

As time went on, and I was more and more sure of the diagnosis, two main emotions emerged: sadness and anger.

It probably goes without saying that I felt immense grief for Harvey and what it would mean for his life and his identity. I grieved deeply for our daughters and what this diagnosis would mean to them.

And I grieved for my losses. Hard.  I knew early on that I would lose my medical practice partner, my parenting partner, my LIFE partner. I grieved for the loss of our shared dreams–vacationing together, moving to a different community, and becoming freer as we retired together.

My anger was never directed toward Harvey,  but I was incredibly angry at the situation and what it would mean for my life. I would have to be in charge of EVERYTHING! Losing my life partner meant that I would have to, albeit gradually, take over the finances, parenting, the household management, all the cooking and cleaning, pet care, driving, not to mention adding caregiving and continuing to practice medicine.

It sounds terribly selfish of me to admit this anger in the face of my husband’s tragic diagnosis and the losses he would encounter. I think it’s important to be honest here, and I suspect many, if not all, caregivers have this reaction. Give yourself permission to feel any emotions you have.