By Mary Gazetas
Alzheimer's Reading Room
In that article I mentioned the role my twin sister, Phoebe plays in being one of my closest family members who I know will always “stand by me.”
We’re 68 years old and live about 6 hours away from one another. She lives on an island and I live south of the city of Vancouver on Canada’s west coast.
Both of us married men who are 12, 13 years older than us. Long ago that kind of age difference wasn’t a big deal. Now however we both admit that because we’re in our late sixties – and these guys are in their early eighties … oh my, our lives have changed.
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Both of us are now caretakers for our husbands living with dementia. Readers know my husband has Alzheimers and lives in a residence. Phoebe’s husband lives at home with her and is doing sort of okay despite there are some signals he has the onset of what is likely FTD.
I’m her coach. She’s my coach.
We share a lot together about our days by way of phone calls and e-mails.
I visit them quite often when I know I need a break. My sister knows my love of the ocean. She has a boat and takes me fishing out into the Strait of Juan de Fuca for salmon where for a few precious hours I can forget what I have left behind back home.
She is very aware I need downtime. Mary time.
Yet I am there for her and her husband too. We sit in their kitchen and talk a lot. We laugh a lot.
Plus I get to see first hand how she communicates with her husband who is often confused and never knows where anything is anymore. And the poor guy is quite deaf. No small wonder things get to be too much at times for him when I am sure he can’t hear us or has to tune those chatty twins out.
I gently nudge her not to ask him so many questions. To slow down and provide information in small bytes.
I see the notes she leaves him on the kitchen counter and on a white board by the door. Actions that remind me what I was doing when my husband was still living at home.
Phoebe has taken an approach to their lives similar to mine. Make each day a good one. The best you can. Rejoice when there are moments that demonstrate there is a strong love there.
Which is a different kind of love than before.
I find it hard to describe how I feel as Valentine’s Day happens this week.
Caring for somebody you love who has obviously entered into another world, I think makes that bond stronger. It makes us change. Am I more caring?
Do I embrace a spiritual world on different terms? Do I treasure our lives together on a different level than before the disease hit him?
So many questions.
The best Valentine message I can give is tell my husband, my sister, my brothers, my children and others who I love (you too Hugo) – who are helping me through this journey and who care – is that I am so grateful for your love.
It’s a time to give THEM valentines.
A valentine’s message here. Sure is. Love is different.
I know. They know.
- How Alzheimer's Spreads Throughout the Brain
- Test Your Memory for Alzheimer's (5 Best Self Assessment Tests)
- What is Alzheimer's Disease?
- What is Dementia?
- What’s the Difference Between Alzheimer’s Disease and Dementia
- Communicating in Alzheimers World
- How the Loss of Memory Works in Alzheimer’s Disease, and How Understanding This Could Help You
- Learning How to Communicate with Someone Suffering From Alzheimer's Disease
Original content Mary Gazetas, the Alzheimer's Reading Room