November is National Caregiver's Month

Nikki at the BIAVT Annual Conference

On Saturday, November 8th, I had the honor of speaking about my caregiving experience at the Brain Injury of Vermont Annual Conference.

As November draws to a close, I wanted to share the contents of my talk. I never expected 7 years ago, how my caregiving experience would evolve, and while it's taken a long time to get to where I am now, I see the progress. And I'm proud of that.

So read on if you'd like to get an idea of the story that I shared at the conference.

I titled my talk “I have been changed…for good.” Some of you may recognize that as lyrics from the Broadway musical Wicked. I know Wicked is everywhere right now! But long before the movies taking over the world, I found these lyrics spoke to me and represent my life as a caregiver. 

 "I’ve heard it said that people come into our lives, for a reason

Bringing something we must learn, and we are led to those

Who help us most to grow if we let them and we help them in return…"

Every caregiver’s experience is different, but I believe there are certain universal lessons that every one learns at some point. I hope to share with you these lessons I’ve learned and how I’ve changed as a caregiver.

As I started thinking about what my goal was in this talk, I started with the story of my husband’s strokes. He’s had 3 over the last 7 years. I’ve told the story many times, and in some ways, it’s become just another story. It’s become fairly easy to tell. But with the help of my therapist, I realized that the story of the strokes is not my story. I have my own story, and I realized that I owe it to myself and to all the caregivers that are here today, to share that and to speak truthfully about caregiving. Caregiving is hard – I don’t want to sugarcoat it. I admit that I don’t know what it’s like to be a brain injury survivor, and I can’t even imagine the challenges you've faced and all the lessons you have learned. You are truly inspirational! But with caregiving, there are different challenges. It is hard and I don’t think anyone ever goes into life thinking they want to end up being their spouse’s, or parent’s or loved one’s caregiver.

Prior to October 2018, I was a wife, mother, teacher, singer, cat lover. My husband and I had just celebrated our 7^th anniversary, and we were empty nesters.

All of a sudden, the life I knew changed overnight when my husband had his first stroke. All of a sudden, I had to take on a new role - caregiver. Not only that but I had to take on the role of manager of the house, the family, the bills, holidays, car repairs, etc. The learning curve was steep. Not to mention all the things I was forced into learning about the medical system and his condition.

I never realized how often the doctors and nurses change when you’re in the hospital. If you miss the doctor’s rounds, you probably won’t get to speak to them that day. There were so many faces coming in and out of his room, and I realized, that I had to be the constant, the keeper of his intricate medical history and his strongest advocate. And I’ve been doing that to this day.

When Trent was at Fanny Allen for inpatient rehab, we met Priscilla, one of his nurses. Of course she gave him great care, but with all of her years of experience, she knew how important family caregivers are. We had many talks where she listened to my fears and answered my questions honestly, and her biggest point was that I needed to take care of myself because I mattered in all of this too. It was the first time I heard that – everything to this point had been about him - but it took many years before I really started to believe it, and even more importantly, act on it.

I became his cheerleader. Everything was about him. I printed out encouraging notes that I put all over his room at rehab, and when he came home, changed our eating habits, encouraged him every day, and made charts to keep track of his exercises. There were doctor’s appointments to get him to, medications to manage, we joined a stroke support group, and started participating in the adaptive kayaking program in the summers. I carried the hope for both of us that he would recover, and then after the second more difficult stroke when it became clear that he wouldn’t ever fully recover, I held the hope that life could still be fulfilling (for him) and that there must be some good that could come from this.   

I don’t want to come across as if I am always positive and happy with how our lives have changed. Overnight, my husband went from being an award winning photographer and partner in our marriage, to being someone else. There are occasional glimpses of his old self, but because of these strokes, I lost my husband, my best friend, the person I wanted to spend time with over anyone else.

Our family and friends changed too. I am fortunate that my adult daughter who was in college when he had the first stroke has remained an important part of our lives. But other family members have virtually disappeared. It has been a struggle to accept that they are not part of our support system without feeling intense anger. Friendships have changed too. People that had been a part of Trent’s life for years, stayed in touch in the beginning, but as the years go by, and it becomes more and more difficult to do things, those relationships have slipped away too.

Caregiving is very isolating. For the first several years, I felt like I had to be super woman and do everything. He was the sole focus of our lives. I think that is natural, particularly in the first year, as you are processing what has happened, and adjusting to the new normal. But I kept going. It was always about him. And I kept taking on more and more. Not only was I working full time, and managing his care, in 2021 we decided it was time to leave our house that he had lived in for more than 25 years and find a more accessible house. I got our house ready for the market, packed it up, coordinated the move, and unpacked and got us settled in our new home. And I just kept going! But it was all beginning to wear on me.   

As 2023 began, and after he had a third stroke, I looked back at all we had experienced and all I had learned. And also how much of myself I had lost as my responsibilities of caregiver increased. I realized that I wasn’t living life – I was just existing. We were approaching the 5 year anniversary of his first stroke, and I was feeling the weight of that. Other caregivers I know have agreed that the five year mark is significant in a caregiver’s journey. Finally I remembered Priscilla and all the subsequent people who had said that I matter, and there was a little spark in me that knew things needed to change. I declared it “The Year of Nikki.” It was a turning point for me.

First I had to make peace with the fact that no matter how many different things I tried, I couldn’t do his recovery for him. He doesn’t do his exercises at home and prefers watching tv and scrolling on his ipad, and me being angry and resentful doesn’t help. I realized that his recovery is his recovery, and mine is separate from his and just as important!

That summer, I had the opportunity to go a summer theater camp for adults in New York City. I would be gone for 8 days! Figuring out his care for when I was away felt like a full time job in the weeks leading up to my trip, but I created the “Trent Manual” and the trip went smoothly and it gave me a chance to connect with a part of myself that I hadn’t used in a long time! It was a big accomplishment, for both of us. And now that I have the “Trent Manual”, I can easily tweak it for other getaways.

During this new chapter, I also became connected with other caregivers. That has been transformational. I started feeling like I wasn’t alone anymore. I started talking to people who understood – their situation wasn’t the same as mine but I didn’t have to explain the day to day challenges. They got it. I am part of support groups online with people from all over the country. While I may never meet them in person, we share a strong bond and can laugh and cry together. Because there can be joy in caregiving, just as there can be sadness.  

I finally realized how much care Trent needed in October of 2023 when he had Covid for the first time and ended up in the hospital and then rehab for a month. All of a sudden, I was home alone with only myself to take care of. I took it as a much needed break! With this hospitalization, people on our care team started telling me that maybe this was the time to put him in a nursing home. I fought against that idea, but I did realize that I needed to start to plan for it, should the day come. I knew it was the right thing to bring him home, but ultimately I knew I was taking on more work again.

In the last year I learned that I need to be honest with Trent about how hard it is to be a caregiver and have all the other life responsibilities that I also must manage. And how I struggle with it sometimes. And I’ve learned that it’s important that he does as much as he can for himself. He was in the hospital this year with the flu and pneumonia, and we had many hard conversations about what he would need to be able to do for himself if he came home. Up until that point, I had never come out and said directly that there might be a day when I can’t care for him at home anymore. I thought I was protecting his feelings. Now he knows and he knows that much of that is determined by him and what he is willing to do on his own (safely, of course).

This life is not easy. I struggle with guilt - so much guilt – that I’m not doing enough for him, not wanting to spend time with him, sometimes wishing I could run away. I work to reframe my thoughts and focus on all that I’ve given him over the last 7 years, recognizing that many other people may have put him in a nursing home long ago. I cry a lot, feel overwhelmed and weary. People who were very important members of my support team said there was something wrong with me because I felt this way – that they’ve never seen a caregiver so depressed. My therapist assures me that she’d be worried if I didn’t feel these things. Please know that it is okay to feel the sadness, the anger, the loss, the overwhelm, the weariness. But this is something I have to continually remind myself of so I don’t go to the place of “I’m not good enough. If I were different, I could be a better caregiver…” I work on this every day.

I’ve learned that I matter. That I have to take care of myself, physically, emotionally, spiritually, financially. Even as I worked to focus on me, I still found myself very burned out. I took a leave of absence from my job earlier this year so I could recover and figure out how I could make this sustainable. It was hard to admit to the world that I couldn’t do it all, but it was a necessary step in redefining my life as a caregiver. I have extra help now, in the mornings to get him ready for the day and one night a week so I can go to bed at 6pm if I want. I have had to release control of his care to other people too, and remind myself that it is okay.

In the midst of all the caregiving, I also learned over the years how important it is to me to support stroke survivors and their families by sharing the knowledge and experiences I’ve accumulated over the last 7 years. In a selfish way, it heals a part of me knowing that I am helping someone who has suddenly found themselves in the role of caregiver and is feeling overwhelmed and scared. I want survivors and caregivers to know they are not alone. In 2023, that big year, my daughter and I founded Stroke Awareness Vermont with the goal to educate the public about the prevalence of strokes and how to recognize the signs and find resources. We host a walk for stroke awareness every year, and this year, I am so proud to say that we launched a local stroke caregiver support group. I want to make a difference because I know how isolating and lonely it can be. I want all of you to know that you are not alone. There is support out there. I will continue to research and find new resources to help others and myself to continue being the caregiver I want to be as well as the wife, mother, daughter, friend, teacher, and advocate that I want to be too.

I want to end by going back to those lyrics from Wicked.

"I’ve heard it said that people come into our lives, for a reason

Bringing something we must learn, and we are led to those

Who help us most to grow if we let them and we help them in return…

Who can say if I’ve been changed for the better?

But I have been changed…for good."