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“I Am Not Alone” interview form
Name: Martha L Garmon
City, State: Paris, TX
Caree name and relationship: Stephan, spouse
Diagnosis and date of diagnosis: FTD – July 1, 2016 / ALS – February 2018
- Where do you find hope? Comfort?
I find comfort in knowing that God is in charge. I know he is providing for us; I know he is holding us up through this process; I know I will see Stephan healed.
- What is one thing about caregiving or you or others – that surprised you most?
The most surprising thing that I have learned about myself is that I can do this. I don’t want to do it, but I can. I can be surprisingly patient with Stephan. I am also surprised at how overwhelming this has all been. It is all-consuming. Every conversation I have at some point comes back to his illness. There is no escaping reality. I am also surprised at how much things have changed in both of us over the last year. We are now almost three years into this journey. The first year and a half was the hardest emotionally. I am still very sad all of the time, but I have settled into a new normal which is not normal at all. I am surprised that anyone survives this at all. I know the only way I will survive it will be by the grace of God.
- How do you take care of yourself?
I make sure I have help. We currently have a caregiver that comes eleven hours per week – and it’s not enough! We recently started hospice and that helps some. He now has a bath aide, so I don’t have to help him shower. The hospice nurse cuts his toenails and fingernails, so I don’t have to do that anymore. I try to take a bath at least once a week, though I still have to leave the door open so I can hear him. I try to stay in touch with friends and to find ways to leave the house when his caregiver is here. I am working to make sure that I still have a small piece of life that is mine. I know that when he dies, I will need some bit of routine that will continue unaltered so that I have a reason to get up in the morning.
- What do you do when you hit bottom?
Fortunately, this hasn’t happened recently, but when it does, I cry and pray.
- What is the best/worst piece of advice you have ever been given?
Best piece of advice lately has been to start hospice and to take respite. The bad advice has now slowed down to a minimum since I have started writing and advocating. I guess everyone realizes that I know what I’m talking about. I still get people who send me information on miracle cures, but this happens less than it did at the beginning.
- What is the best/worst thing you have learned about yourself?
I have learned that I am strong, but I have also learned that I don’t like being the strong one all the time. I have also learned that when I am tired, I can get annoyed very easily. I’m not always very gentle when I am tired.
- What would you most like to tell someone who has become a caregiver?
Do not do it alone! Allow people to help you. Make a list of things that would help you out and when someone offers to help, give them the list. You will be surprised at the little thing that puts you over the edge. Let people help!
- What would you do if someone handed you a million dollars?
The original question was for $100,000. That just isn’t enough. With a million dollars I would start a non-profit to help caregivers in my town. I would make it replicable so that it could be started anywhere. I live in a small town that has very few services, we need to find ways to help caregivers in small towns, too.
- What would you do with three extra hours a day?
If I had caregiving help during those three hours, I would get out of the house and do something just for me.
- What do you wish you had more of?
Time with the man I married.
- What are five easy things you do to relax or find joy?
- Take a bath
- Read a book
- Go to lunch with a friend
- Drink my morning coffee or evening glass of wine on the back patio
- Play with my grandchildren
- What is the best/worst question you have ever been asked?
The best question continues to be “How are you doing?” from someone who really wants to know. The worst question is “How are you doing?” from someone who is just being polite.
- What are three things someone could do to help YOU (not your LO, but you)?
- Come sit with him so I can take a bath with the door closed.
- Help with my projects around the house – maintenance and repairs
- Spend time with me as I try to decorate my new house
- When was the last time you cried?
Not including just now while answering these questions, last week during my bath. I have found that the bathtub is a great place to cry because I’m already wet and when I get out, I can explain my red eyes and nose by saying that I got soap in them.
- Do you like yourself?
Very much. I am actually quite surprised with the wisdom I seem to have in dealing with all of this. However, I can’t take credit for that wisdom, I have no doubt that it is God’s wisdom given to me at just the moment I need it.
- What is the hardest thing you have faced?
Knowing that it is only going to get harder; knowing where this is all going to end; knowing that I will be a widow.
- What is the one thing that no one can understand about your situation?
How incredibly sad I am most of the time. I love Stephan more than I could ever imagine and the thought of a life without him is unimaginable. Also, how hard it is to remember who he was before FTD/ALS. I have heard from others that those memories will eventually return, but the loss of the man I married makes me extremely sad.
- What is it that everyone should know, but no one wants to talk about?
Even if you don’t know what to say, we still need you to be here for us. I would prefer that you ask a stupid, but sincere question than to just avoid us because you don’t know what to say. The best thing you can do is ask us what we are feeling or what it is like or what we are dealing with on a daily basis. THEN be willing to listen to the answer.
- Do you have support from family? Friends? Church? Others?
We do to a point. My children have their families and babies at home, so realistically they are mainly emotional support. I know if I needed them, they would be here; but I don’t want to play that card unless it’s necessary. We moved to Texas to be closer to them and just being able to see the grandchildren makes us smile. Baby therapy is the best! I am making friends in our new town and the ones I have are very supportive emotionally and learning to be supportive in other ways as well. The pastor at our new church has been very helpful in the moving process.
- What do you miss the most?
The man I married and our dreams of the future.
- Do you have a humorous story you would like to share?
We were recently babysitting our grandson. I needed to cook dinner so I put him in charge of feeding the baby his snacks so I could go to the kitchen. When I returned I found him eating the snacks instead of giving them to our grandson. In his defense, I tasted one and they were pretty tasty.
- Anything else you would like to add?
Once again, don’t be afraid to ask for help. It’s hard, but necessary. You cannot be strong enough all alone to survive this valley, you will need help!
- List any resources that you have found helpful in your journey.
The FTD Spouse on Facebook
“I Am Not Alone: Conversations with Care Partners of People with Dementia” by Martha L. Garmon – I may have written the book, but these people continue to inspire me and I love to reread their stories, knowing I am not alone in this mess.