We are talking to caregivers of loved ones who suffer from Alzheimer’s and other dementias. We are listening to their stories and sharing them with others. As the exclusive Caregiving Partner of The Women’s Alzheimer’s Movement™ and Move for Minds founded by Maria Shriver we want to increase awareness of the disease and the need for more research to find a cure. These profound narratives provide a window into the daily reality of caring for a loved one with dementia. To read the experiences of these caregivers is to read about the real heroes in our midst.
This story was submitted to us by JF Garrard, who was the caregiver of her father who passed away from vascular dementia. Her experience caring for him without the support of her family left her with the nagging feeling that she could have done more. She struggled with the child/parent role reversal and believes she didn’t fight hard enough to take over his care. JF is left with the nagging feeling that if she had had more information she could have found better care for him which might have extended his life. Here is JF’s story in her own words.
My father retired last year and had a sudden onset of Vascular Dementia due to a mini stroke. He died after a few months and the doctors were still investigating the best course of treatment when he passed.
Every day since his death my brain is stuck thinking about all the possible scenarios and outcomes and what I could have done better. It was a difficult time as I was a new mother of a baby while my father was very ill. However, my family was not on the same page. They thought I was being dramatic - although his behavior had changed. He was a quiet man and many didn't notice that he was not the same.
As a child trying to take care of a parent, I didn't know how to cope with the sudden role reversal. Parents are your compass and when they suddenly become confused, it is very frightening. Since they are adults, they have free will and will fight every step of the way as they want to keep their independence.
If I had to do things differently, I would have acted faster to find more doctors. I believe with better care perhaps he wouldn't have died so quickly. Or, I should have insisted on moving in (my mother wouldn't let me do this due to my baby) and managed his care more. I shouldn't have spent so much time fighting with family who didn't believe he was ill, which delayed his treatment. Instead of trying to get consensus, I could have been stronger/braver and not cared about what the rest of the family thought.
I wish with all my heart that the outcome would not have resulted in death, which may seem immature of me.
Although my father was sick, we still tried to hold family events so that he would see all of us every weekend.. He died a week after father's day and I am grateful that we spent that day with him even though he was not aware that we were there for him.
To overcome any challenges in a day, I think one has to remember to be kind, compassionate and empathetic. Their minds and world has changed, they are not the same person that they used to be. Writing things down is super important to ensure communication isn't crossed. Also, they are not rational - with medication and food, someone will have to watch them like a hawk. In many ways, they become children again and need lots of care. I wish I had the experience of dealing of children prior to facing such an illness, the timing was so crappy...I guess there is never a good time to get dementia.
The pain of his death is still very raw as it's been less than a year and I loved my father very much.
I was jealous of a work colleague whose mother had Alzheimer's, she had the long goodbye. She wanted to trade places with me for the short goodbye, but we both know such a thing is not possible.
We have the deepest respect for JF, her compassion and her efforts to care for her father. Her story articulates the need for advance care planning to document a parent’s wishes before he or she falls ill. Life can be a little easier for caregivers when the parent’s priorities are clear to all involved.
This is also one more story that highlights the need to increase research into dementia
and Alzheimer’s disease in order to find a cure. The fight against Alzheimer’s disease is going to require each and everyone of us. While we care for and comfort those suffering with the disease, we look to the day when a cure is found. challenges of dementia caregiving, let us be a resource of information
in supporting your loved on. Move for Minds and The Women’s Alzheimer’s Movement™. In honor of professional and family caregivers around the nation we’ll be providing respite care grants to family caregivers across the U.S, to learn more or apply, please visit: https://homecareassistance.com/moveforminds