Before the diagnosis my husband would lose his temper at me. He’d leave the house and I’d not know when he would return. He wouldn’t go to marriage counseling, so I did. What was I doing wrong?
Then one day he lost his temper at our child. I’ll never forget that moment, and our child holds it still. Our family was hurting.
Years after diagnosis I suddenly realized the temper episodes stopped. Cold turkey!
I could look back before the diagnosis, and I saw we had been in denial, and I realized we worked very hard at supporting our denial. Perhaps my husband’s anger was part of his denial tactics, a masquerade of a “normal” person under stress. Before the diagnosis the stress of denial disrupted our family, and after the diagnosis, Huntington Disease disrupts our family, too. But now struggles are genuine and contain a good measure of peacefulness and acceptance.
I subscribe to a caregiver’s newsletter from Mayo Clinic’s Alzheimer’s Disease Research Center. Recently it had an article on “Pleasant Dementia”, the characteristic of some people with dementia who, like my husband, are “stuck in the moment” which is one filled with ease, appreciation for each sunrise, deep love for his family and silly jokes.
For us, going from before-diagnosis to after-diagnosis is not about losing your whole life, although the losses are many. Rather it’s about replacing denial with acceptance, anger with letting go, and worries about the future with being fully present with today’s life.
The author who submitted this story to HOPES wishes to remain anonymous