Caring for a loved one with dementia can be challenging and at times, overwhelming. Currently, more than 16 million Americans provide unpaid care for people living with Alzheimer’s or other dementias. Salem resident and former caregiver Susan Jones cared for her partner Elizabeth for 12 years — from her diagnosis of Parkinson’s with dementia until her death. She shares her personal caregiving insights and tips below:
What was it like caring for Elizabeth over the course of her disease?
I was with her through all the changes and stages of the disease. At first, the accommodations we made were easy. We did things more slowly, repeated more, equipped our home with appliances that made it easier to get up, walk, take a bath, etc.
As time went on, Elizabeth’s needs grew. I had to help her with everything and take care of all the chores we shared before. I resented my lack of independence when she needed someone with her all the time.
Elizabeth suffered her own illness plus having a caregiver with a rotten disposition.
Through the help of meditation, talking with friends and going to support groups, I grew up sufficiently to begin to see our shared experience as an opportunity to grow and to love each other like we wanted to.
What do you wish your friends and family knew about caring about someone with Alzheimer’s or another dementia?
Firstly, it is a devastating loss for the person with dementia. Devastating in that they feel like they are losing their mind.
This triggers fear of losing their independence, of being a burden, of being “put away” by their loved ones, and of dying or living a life that is worse to them than dying.
Additionally, while the person with dementia may have thoughts that are mixed up or nonsensical, they still have the same feelings and needs as before — to be listened to and responded to with kindness and care.
Lastly, even though you love the person and are committed to caring for them until the end, this will be the hardest thing you ever do — and the hardest thing your loved one has ever gone through. You can do it, together, but you will need a lot of help and support.
To read the rest of this compelling interview with Susan Jones, please visit northwest50plus.com.