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“I Am Not Alone” interview form
Age at diagnosis: 76
Diagnosis and date of diagnosis: Semantic PPA 2015
Where do you find hope? Comfort?
The rebirth of spring is a comfort. Even the stark winter has its own beauty and message of strength in the bare branches.
What is one thing about caregiving or you or others – that surprised you most?
It is a full-time occupation, even when there is nothing that has to be done. It is hard to turn off the static in my mind.
How do you take care of yourself?
I have some help, so I can attend an adult school program twice a week at a local university. I cuddle my dachshund. I stop to notice nature’s messages. I attend a support group for FTD.
What do you do when you hit bottom?
I wish I could cry but that seems to elude me. I keep a journal and try to express my feelings and options. It helps.
What is the best/worst piece of advice you have ever been given?
Best: Take care of yourself. Worst: Take care of yourself. Outsiders just don’t get what the stresses are in reality, so this piece of advice without an offer of help is meaningless.
What is the best/worst thing you have learned about yourself?
Best: I can grow. I can adapt. Worst: I am impatient and needy.
What would you most like to tell someone who has become a caregiver?
Get help often and early, from friends, support groups in-person and on line, and be gentle with the caring, striving person you are.
What would you do if someone handed you 100 thousand dollars?
Worry less, but probably do about what I am doing now with a little more help.
What would you do if someone handed you a million dollars?
Find a way to contribute to education about dementia globally.
What would you do with three extra hours a day?
Read, walk, have phone conversations with people I love rather than brief texts.
What do you wish you had more of?
What are five easy things you do to relax or find joy?
Play music, read, walk, cuddle dog and journal.
What is the best/worst question you have ever been asked?
Best: How can we be part of your real life? Worst: Are you placing him yet?
What are three things someone could do to help YOU (not your LO, but you)?
Talk with me. Understand the peculiar loss of my husband who is still alive.Go someplace for fun so I can let it go for a little while.
When was the last time you cried?
Can’t even remember.
Do you like yourself?
Yes and no, I am trying hard, doing pretty well for him and for me, but fault myself for impatience and neediness (lifetime issues.)
What is the hardest thing you have faced?
Knowing he is leaving me, one small piece at a time.
What is the one thing that no one can understand about your situation?
This crazy kind of grief, fraught with love and loss, helplessness and anger.
What is it that everyone should know, but no one wants to talk about?
This is a progressive fatal condition. It tears everyone apart and takes away both the past and the future.
Do you have support from family? Friends? Church? Others?
Emotional support from family and friends, support group and therapist.
What do you miss the most?
My husband, with all his foibles and warts, was truly my most important human connection. I miss him.
Do you have a humorous story you would like to share?
Wish I could think of one. There have been moments! Like substituting Benadryl anti- itch cream for toothpaste. I’m learning to think ahead.
Anything else you would like to add?
Mindfulness is my only salvation. The difficult moments will pass; the beautiful moments will stay as long as I have memory.
List any resources that you have found helpful in your journey.
AFTD website. Facebook and in-person support groups. My medical team at MGH.