A caregiver’s story-Meet Ralph and Eileen! Love for his wife is the driver for Ralph and Dementia is the road Eileen has been on.
This is Ralph and Eileen’s story. Many other families will also navigate similar experiences in their silver ages! We can learn from each other through sharing our stories and knowing what resources can help.
Ralph Scandiffio: Home is where Eileen feels safest. This is where her comfort is.
As she loses more and more of her recent memory and gets further away, her main concern is the progression of her dementia, she doesn’t recognize this as a home anymore.
My name is Ralph Scandiffio. I have been a caregiver for my wife Eileen.
My concern now as a caregiver is how to maintain my wife’s quality of life.
We’re both lonely- as a caregiver and also as a care recipient.
Caregivers often see their once vibrant, engaged, warm, caring, loving, capable, dynamic person gradually recede into a shell in which they begin to avoid social interaction.
It’s not the loneliness of being solitary, but it’s the loneliness of waking up, sitting beside, eating with someone who has nothing to say.
Caregivers often talk about that experience of, the disease creeping up. And without really realizing it, life before them has transformed.
Ralph Scandiffio: I really think that caregivers who are new to this activity should learn to take care of themselves. It’s very helpful if you can find a network of friends who help. And I’ve just recently realized that the new friends are those who are associated with caregiving. They’re people in the support group at the Alzheimer’s Society. And these are my real, new friends.
I had no idea how difficult it would be.
You learn how strong you are and you learn how vulnerable you are and you’re sometimes fragile.
Guiding the caregiver to understand their own particular situation and then helping them figure out what specific things they need and when they are going to need them during the course of the disease, is a critical element of counselling.
What’s missing in that array of services is the opportunity for the caregiver to engage with others in a deeper way so that there’s a true sharing of knowledge and experience, helping with the loneliness.
Ralph Scandiffio:I can’t add any quality to my wife’s life.
One of the important things I think in caregiving is to have compassion.
But you have to train yourself to maintain that compassion. A network of people going through shared experiences, can help and it is critical to the emotional health for a caregiver.
If you do not know where to start the Alzheimer’s Society is a good place to start!
I hope you find this story helpful!
Danielle Pointon
Live Blue Consulting
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