"Always make sure you take care of yourself."

My name is Samantha Dengel, and I am a Clinical Research Coordinator at the Penn FTD Center. During my time at the Penn FTD Center, I have had the opportunity to meet so many wonderful research participants and their family members. In the below posting, I conducted an interview with the spouse of a research participant with frontotemporal dementia (FTD). The goal of this interview is to shed light on what it is like to care for and love someone with FTD and amplify caregiver voices. Names and identifying information have been omitted to protect the privacy of the research participant and her husband, whom I had the pleasure of interviewing.

Sam:

What is her diagnosis? In what ways have you seen her diagnosis impact her personal life?

John Doe:

Her diagnosis is FTD; she deals with symptoms of both primary progressive aphasia (PPA) and behavioral variant FTD (bvFTD). This diagnosis has caused her to lose her job and her driver’s license, which she actually doesn’t understand. So really, some of these things don’t affect her because she just isn’t aware; it’s not making her sad. She is now anxious, however, and she also deals with memory loss,  forgetting who is who, and short-term memory loss. She calls our son “honey”, which is something she used to only ever call me [her husband]. She is also mixing up words; they no longer come easily to her, and this is very frustrating for her.

Sam:

How has her diagnosis impacted your life and your relationship with her?

John Doe:

Our relationship is different…At times, this disease feels deceiving; it plays with my mind. This is the same person physically, but emotionally and mentally, she is very different, and I must conform to this. This is what marriage is, though. You stay with someone through illness. We also don’t do the same things anymore, like go out to eat; we used to always do that together, but she doesn’t want to do those things anymore. I would say she is more childlike…that’s how I look at it sometimes to keep my patience. Overall, the relationship is different, but we still have a good relationship. No one ever believes this, but we have been together for almost 25 years and still never fight!

Sam:

What are some ways that you manage her FTD?

John Doe:

Well, I have to be patient with her. It is hard, very hard. Sometimes I do get emotional or snap back at her, but you have to realize that this is the disease, and it is not the person’s fault. Everyone is different, but when she is agitated or repeating herself over and over, I shift my focus away from the behavior, and it will diffuse itself eventually.

Sam:

What are some ways others could best support you and your experience as a caregiver of a loved one with this disease?

John Doe:

Our support now is a hired caretaker; we have to pay for this out of pocket. I do this to give myself a break. Outside of that, she has a very strict routine. It’s much easier for me to find time for myself based on this routine. For example, I know what time she will be expecting us to have lunch together or go to the store together. She also eats dinner early, washes up for the night early, so I can leave her alone for a bit during this part of the day and have some time to take care of myself. Hired help, though, is a huge help. Our kids are also very supportive, as well as other friends. Our friends drive to come see us and help out and offer support.

Sam:

What are some things you wish more people knew about FTD?

John Doe:

Just that it’s a different person, this is not the same person anymore, and you have to conform to it. It is hard and challenging, but it is what it is. Just be supportive of them. And make sure you find time for yourself - call in a caregiver, have a friend come over. Always make sure you take care of yourself as well.

Sam:

Is there any advice that you would like to give to others caring for loved ones with FTD?

John Doe:

Emphasize taking care of yourself. It is not selfish. When I find myself thinking about it [FTD] too much, it can really consume me. I have to tell myself to “stop”. I verbally say this and force myself to think about things I enjoy instead. It will consume you if you let it. This challenges me, since I am a naturally positive person. It is okay to have those moments, but always let it go and make sure to take care of yourself, along with your loved one. I remind myself that none of us are here forever, and we know what this disease is. It is what it is, but it still can be very hard, unfortunately. In my opinion, also, if you are upset, you just do it - cry, scream, do what you need to do to get your emotions out.

Sam:

How would you describe participating in our research program from a care partner’s perspective?

John Doe:

I actually enjoy participating in it. I enjoy it, I really do. I look at my children since this is genetic* and think that this could hopefully help someone down the road at some point. The people I have met while there [Penn FTD Center] for research have been so caring - this is also part of support, in my opinion.

*Author’s Note: Not all forms of FTD have an identifiable genetic cause. While there is some variance depending on the reporting site, only around 20–25% of people with FTD carry a genetic mutation. Most people with FTD do not have a single identifiable genetic cause. When there is a family history of FTD or related disorders, the chances of a genetic cause are higher.