We recently spoke on how the struggles of Alzheimer’s and other memory support caregivers dominate the discussion of the topic. After investigating the experience of real men and women who have been diagnosed—their thoughts, fears, and experiences living with cognitive dysfunction—we’re once again turning the dialogue on its head with more real life stories from people who are living with memory loss and the caregivers who support them.
Alzheimer's will change your relationship with your loved one.
If your parents or spouse was recently diagnosed with a cognitive disorder, there's no getting around the face that life will not be the same going forward. Their ability to give you the support you need will decrease as their dependence on you will increase.
It creates strain on the relationship, and some caregivers begin to experience resentment.
On her blog, thealzheimerspouse.com, Joan Gersham writes about this frustration. When her husband, Sid, was diagnosed with Alzheimer's in 2007, she felt overwhelmed—a feeling that gradually turned into a sense of latent anger:
"I keep emphasizing marriage as a 'partnership.' It’s never perfect; one of the partners may always feel he/she is doing more than the other, but generally, there is at least some splitting of duties. You do the bills, he does the lawn; you cook, he vacuums… You don’t have to do it all. You have help. Then, slowly, more and more chores and responsibilities fall to you, because your partner is unable to do them. Resentment sets in, and it can only hurt an already strained relationship."
But you need to remember that the person you loved is still there, and maintaining your relationship, however changed it becomes, can be a lifeline in a topsy-turvy world—for you and for parents or spouse.
For Gersham, this reminder came in cherished, fleeting moments shared with her spouse:
"Sometimes, connections come when least expected. Two nights ago, I was reading in bed, as is my nightly ritual; Sid came into the room, and said, 'I need to hold you– let me hold you.' I lay in his arms… he said he didn’t want to cause me any more pain than he already had– he loved me and wanted to try hard to make my life easier. I assured him that nothing that he was doing or anything that was happening was his fault, and it was I who needed to try harder to be more patient. For those few brief moments, we both felt like “us” again. Like the partners we had always been."
Many dementia patients feel ashamed. They need your reassurance.
Most people don't want their loved ones suffer on their behalf. Many people with cognitive degeneration experience grief when they see the effect their illnesses have on others. Moreover, they feel that grief while trying to come to grips with the despair they feel about their own reduced abilities.
Vicki Wells Bedard, a woman diagnosed with Pick's disease— a neurological condition which causes progressive scrambling of the senses and motor dysfunction— talked about that dual sense of sadness, writing about a terrifying dystonic episode:
"With God’s good grace, my daughter, husband and grandson came by… They took one look at me trapped on the couch, and went into their now experienced mode… I tried to implore them with my eyes or grunts, but my hands were curling and my body was trembling. They pushed the pills through my lips, and in a moment of reprieve I could swallow, and then it would begin again… After a few hours, they helped me into bed, stayed by my side for the next few hours, cool cloth on my head, and we wept. Wept that I had to burden them with this, and that I was burdened with this."
As Bedard’s experiences demonstrate so sharply, and those of us who do not experience memory conditions ourselves often forget, caregiving has two sides.
Those receiving memory support have their own experience of care.
Unlike Berdard, however, those who live with the progressive decline of Alzheimer’s become unable to share their thoughts and fears in the later stages of the disease, and it can be easy to overlook the person who is trapped within an impaired mind as cognitive dysfunction takes hold.