I Am Not Alone – Karen

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“I Am Not Alone” interview form

Name: Karen
Caree: Frani, spouse
City, Country: Glasgow, UK
Age at diagnosis: 57
Diagnosis and date of diagnosis: BvFTD & Semantic Dementia, Feb 18, 2015

Where do you find hope? Comfort?

I take comfort from the life we lived before the diagnosis. He is my soulmate and I’m glad I met him. My family and friends are the most amazing support to both of us.

What is one thing about caregiving or you or others – that surprised you most?

How much you can bear. I never knew I was so resilient. You think you are broken, but you keep getting up and carrying on.

How do you take care of yourself?

I try to eat regular meals, and when I have time without caring responsibilities, I try to find peace, quiet, and stillness. Sometimes I have a massage, sometimes I just park somewhere and read a book or listen to music.

What do you do when you hit bottom?

Have a cry and get on with it.

What is the best/worst piece of advice you have ever been given?

Best: Enjoy the good times and video your loved one speaking; don’t just take photographs. I really miss his voice now that he is losing his speech.
Worst: You could always just walk away.

What is the best/worst thing you have learned about yourself?

Best: I love him more than I ever realized.
Worst: I can get very frustrated.

What would you most like to tell someone who has become a caregiver?

Self-care, self-care, self-care. You must afford yourself the same level of care, if not greater, than you give your loved one.

What would you do if someone handed you 100 thousand dollars?

Pay off my mortgage and fully upgrade my house because it will probably be the last time I would have any spare money since our retirement fund is now spent.

What would you do if someone handed you a million dollars?

Same as above and then I would find the best researchers for rare dementias and donate in Frani’s name.

What would you do with three extra hours a day?

Sleep!

What do you wish you had more of?

Time with Frani before he became ill.

What are five easy things you do to relax or find joy?

Grandchildren, my dog, music, baking, and reading.

What is the best/worst question you have ever been asked?

Best: “Would you like me to take Frani out for a few hours?”
Worst: “Does he still know who you are?”

What are three things someone could do to help YOU (not your LO, but you)?

My housework, talk to me about something other than dementia, and cook dinner for me.

When was the last time you cried?

Today.

Do you like yourself?

Not very much.

What is the hardest thing you have faced?

Having to admit that I was done and deciding to place Frani into long-term care.

What is the one thing that no one can understand about your situation?

The guilt that I feel because I don’t think I did enough for him while he was living at home.

What is it that everyone should know, but no one wants to talk about?

This is very, very tough and incontinence is almost always going to happen.

Do you have support from family? Friends? Church? Others?

I have an amazing family and my friends have come through for me. Frani hasn’t been as lucky with family and friends and that is heartbreaking.

What do you miss the most?

Having someone to lean on, share my date with, cuddle up to on the sofa or bed. I just miss him so much.

Do you have a humorous story you would like to share?

Gosh yes. Not long after he was diagnosed we were in the market for a walk-in bath. He had slipped one too many times and I couldn’t stand the stress of bath time. We went to a big bathroom showroom in Glasgow and wandered around looking at the bathroom suites. Suddenly, I noticed Frani was missing and found him urinating in a display toilet. His only response was, “At least I only did a pee.” I wanted to tell the staff what he had done, but my daughter wouldn’t let me and we made a hasty exit out of the showroom.

Anything else you would like to add?

I swore that I would look after Frani at home until his journey ended. I had absolutely no concept of the toll the disease would take on both of us. By the time I had to make the decision to place him, I was incredibly ill myself and a broken person. If it hadn’t been for my illness, I think I would never have placed him and I worry about what would have happened to me. Eighteen months later, Frani is happy and calm in his care home and I am beginning to regain my health and well-being. the guilt of placing him lies heavy on my heart, but it was the only option. Another spouse once said to me, “You have a choice whether you fall in the grave with them or save yourself.”

List any resources that you have found helpful in your journey.

Alzheimer’s Scotland has been central in our survival of this disease.
A Facebook group called “The FTD Spouse”.

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