By Larry Gnatzig, as told to Jennifer Clopton
This is a question I get asked a lot. But I’m not Jeff. Jeff is my husband of six years and my partner of 23 years. People ask me about him because at the age of 59 he was diagnosed with frontotemporal dementia, a degenerative brain disease that affects the parts of the brain associated with behavior and language.
This question is a hard one for me to answer for two reasons.
One, there isn’t a good answer. Jeff is doing okay. He still looks like himself in many ways, but this degenerative disease is slowly and deliberately changing the man I love. We are still living together, although we have transitioned to senior living to make things easier and safer for all of us. He also still gets up and gets dressed, and we will still go places together – like out to eat or to meet up with family.
But his vibrancy is gone. His cognition and critical thinking is declining, and though he can talk, he isn’t capable of having long conversations the way he used to. There are times he can’t find the words he’s looking for, and he can sometimes no longer keep a storyline together when he’s talking. He can’t drive and has developed nearly constant hand tremors. While he still will go places, especially ones that are meaningful to me, he has become more withdrawn, apprehensive, and anxious. So, he has given up traveling – something we both used to love – and now is most content spending his days watching TV at home.
So the question – “How’s Jeff?” – is hard to answer because those truths are tough and emotionally taxing to talk about. The question is also hard for me because it is often the first and only one asked, and that leaves me feeling invisible and adds to the incredible isolation that I often already feel as a caregiver.
“Don’t you see me here?” I sometimes want to respond. “Why wouldn’t you start by asking me how I am doing?”
The truth is – caregivers are rarely asked how we are doing. That’s why I’m very honest – sometimes what some call brutally so – about the wide range of feelings I experience as a caregiver. It’s also why I’m glad this is National Family Caregivers Month because I think it’s important to talk about the toll that comes with constant caregiving. People need to know what it’s like and what they can do to help.
Caregiving is an incredibly varied experience – depending on who you are assisting, what your relationship is, and what their diagnosis or challenge is. But no matter our differences, there is one thing that all caregivers have in common: we all understand just how overwhelming this job can be.
In my case, for more than two decades, Jeff and I balanced life together – and all of its ups and downs. Now I shoulder everything for the two of us, and things are far more complex and emotional than ever. I will take on and handle whatever comes because I love this man. But I believe it’s also okay for me to admit that this is hard.
It’s hard because my loved one is slipping away before my eyes. It’s hard because there’s an increased workload at home. It’s hard because there are greater financial responsibilities, which is about $3,000 a year for us because I take unpaid time off from work to manage appointments and other needs. Handling all of this on your own is exhausting. It’s also hard because you feel guilty if you try and speak up about these things. Whether intentional or not, the reaction you often feel from others is – what right do you have to complain?
Here’s the thing – I understand that as a caregiver, my life is no longer just about me. My life right now is devoted to supporting Jeff. That is the vow we made to each other, and it’s where I want to be. But I also believe as caregivers it’s vital that we talk about how it feels when your life unexpectedly shifts in this dramatic way. If we don’t speak up and say where we’re struggling and what we need, then it’s like we’re letting ourselves disappear in this role. It is entirely possible to almost literally sink into the background as everyone focuses on the person we love and forgets to ask how we are holding up.
So I’m very honest about what I need. I need connections with other people. As soon as Jeff was diagnosed, I started attending a local Alzheimer’s Association support group for caregivers. It has been a godsend to talk with other people who get what I am going through.
I have to take time for myself and be diligent about self-care in order to have enough energy to fulfill all of my responsibilities. I also believe in having hard conversations. When Jeff was first diagnosed, I had them with him. We discussed that my job is to make sure he’s taken care of, but there may come a time when it’s not me taking care of him. He didn’t want me to totally give up my life to care for him either and insisted that I still travel. So I do – several times a year – without guilt. He’s the one who taught me that I couldn’t completely lose myself in this role. He loves me so much that he made sure I heard it from him before he wasn’t able to say it on a regular basis.
And now sometimes I have to have hard conversations with other people who question why I take travel breaks or go out to dinner without him. More than once I’ve had to say, “Look - this is what works for us. It might not work for you, and you might not even understand it, and that’s ok. I don’t need you to. Thanks to Jeff, I know that this part of our journey isn’t just about him or me. We are in this together.”
So to all the caregivers out there I want to ask you a question – How are you doing?
If the answer is “not great,” then please start to make yourself a priority. Talk to a friend. Take some time to yourself. Don’t let yourself disappear under the weight of all your responsibilities. Because ultimately you won’t be able to sustain your care of the person you love if you don’t first take care of yourself.
Larry Gnatzig is the father of two, a grandfather of four and a great grandfather to one. He is an active Alzheimer’s advocate sharing his story with elected officials to push for legislation to improve the lives and needs of families facing Alzheimer's especially among the LGBT community. He received the 2017 Caregiver of the Year Award from the Alzheimer’s Association Wisconsin Chapter for his commitment to raise awareness of the disease. Larry and Jeff live in Milwaukee, WI.