I Am Not Alone – Gena

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“I Am Not Alone” interview form

Name: Gena
City, State: Eatonton, GA
Caree: Bobby, spouse
Age at diagnosis: 63
Diagnosis and date of diagnosis: FTD May 2017, but the symptoms had been present for at least 2 years prior

Where do you find hope? Comfort?

My faith in God is the only thing that has saved my sanity. My quiet time with Him keeps me glued together.

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

How completely exhausting and overwhelming it is. Your brain is never allowed to shut down.

How do you take care of yourself?

I escape through reading when I find time and tending my flower garden.

What do you do when you hit bottom?

I cry and pour my worries and concerns out to God. I am also blessed with many loving friends and a wonderful sister that I call on when I am at my lowest.

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

Best: Take care of myself. It truly is SO important. Worst: I can’t say I have received bad advice. I have not agreed with all the advice that has been “offered, but not requested”, but I know it was given from a place of love and concern.

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

Best: I am stronger than I ever believed, and able to adapt and adjust to some very difficult and trying circumstances. Worst: I am human, therefore fallible. My patience isn’t nearly as strong as I had hoped.

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

Feel whatever you are feeling, there is no right or wrong emotion. And don’t think you are going crazy even if you feel many different emotions in one day – even one hour. It is a roller coaster of emotions ranging from grief, anger, frustration, bewilderment, joy, and sadness. Feel it, own it, experience it, and keep moving forward.

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

I would hire round the clock assistance and just get away for a couple of days. I would save the rest for expenses related to caring for my husband.

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

I would hire full-time, in-home care so that I would not be in the process of placing my husband due to his increased anger, aggression, and violent outbursts. I would donate a large portion for FTD research. I would also try to help those in my area who are traveling this same, horrible journey.

What would you do with three extra hours a day?

Run my errands instead of having to ask others to do it for me. I would visit with my friends and family more, and I would rest and recharge.

What do you wish you had more of?

Patience and money.

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

Pray, read, garden, call my sister or best friend, and send cards to others.

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

Best: What are some practical things I can do to help you? Worst: The worst question is the one that has not been asked with any consistency by his children, “How is my Dad?”

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

Pray for my strength and wisdom; offer to sit with him while I have a short break; and give me a hug. I miss human contact since he wants nothing to do with me.

When was the last time you cried?

Almost daily.

Do you like yourself?

I like many things about myself, but I am trying to be gentle with myself on the things I really would like to change. The world beats us up enough, we don’t need to jump on that bandwagon.

What is the hardest thing you have faced?

The loss of my best friend and supporter, our dreams and our plans.

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

What it truly feels like to lose the most important person in your life – little by little – day by day, yet they still look the same. Living with a complete stranger and trying to reconcile the way you feel about your loved one, and coping with this new person you don’t even know.

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

The sadness is overwhelming some days, and that is ok. You cannot hold onto that brave face 24/7 – there are times we don’t need your advice or attempt to fix things, we just need you to share space with us and hold us and let us cry.

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

Yes, I am truly blessed with a wonderful family, great friends and an awesome church family. I am also a member of an online Facebook support group for FTD spouses which has been extremely beneficial and educational.

What do you miss the most?

Laughter – we used to laugh together every day about simple, silly stuff. He had a great sense of humor and could always make me laugh on the worst of days.
Physical closeness – we used to hold each other as we drifted off to sleep each night, softly rubbing each other’s backs.
Support and encouragement – he always had my back and encouraged and comforted me during some of the hardest times of my life.

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

He has become a very picky eater and no longer likes most of the things he has always eaten. Recently while he was looking at the sales paper from a local grocery store, he mentioned they had a particular pizza on sale (he no longer will eat pizza, but he knows I do). I asked what type of crust it had, and when he responded, I told him I didn’t like that particular one. He looked me straight in the eye and told me, “You should not be so picky.” LOL All I could do was laugh.

Anything else you would like to add?

My prayers are with all the caregivers and their loved ones on this journey. It is a heartbreaking and devastating road to travel. I am comforted in knowing I am not alone.

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

TheAFTD.org; the Facebook group for FTD spouses; and a local support group.