Clark was Wendy’s primary caregiver as she battled ALL and MDS, and during her double cord transplant in the summer of 2009. As husband and wife, they are now back to enjoying hiking, spending time with friends and going to church.
Whether you are a patient or a caregiver, you know that going through the journey of a life-saving transplant affects your relationship with the other person, for better or worse.
Wendy and Clark say they are best friends and love spending time together. How did they manage the patient/caregiver dynamic as a married couple? How did they make it through years of chemotherapy and a transplant to arrive at a relationship that is stronger than ever?
The patient: Wendy’s perspective
The hardest part about balancing the roles of patient and spouse was realizing how much my role as a wife changed. Before transplant, I felt equal to my husband in every way and now I did not. I felt weak, less than. My husband absolutely did not make me feel that way – it was all me. However, when you can’t do the same things you used to do and need to be taken care of, it affects how you feel about yourself and the most important relationships in your life, like being a spouse.
I think the patient/caregiver dynamic will always be part of our lives to some extent, but it lessens more and more as time goes on. Clark will always be more protective over me and my health because of my diagnosis and transplant, but I’ve been able to manage all aspects of my health care by myself for three years now and it is no longer a daily issue. Clark would tell me over and over again my only job was to recover and get better. In that sense, he made it very easy for me. He wasn’t expecting me to play the same role I had before I was diagnosed. However, there are times when, as a patient, you don’t want to be in that role – you want some sense of normalcy. You just want to be a husband or wife. That is why communication is very important. You need to let your spouse know, in a loving way, of course, that you don’t want to feel like a patient all the time. At some point you want to start taking on the spouse role to feel normal and productive, and as a distraction from being a patient.
The biggest issue for me is understanding how to deal with my emotions. It is better than what it was early on, but he still has to help me out in that area on occasion (as well as seeing a counselor, occasionally). It’s important that we both feel like we can communicate freely. We each talk about our fears, frustrations, disappointments, anxieties, grieving. Each person can then appreciate what the other is going through. Many times, we are both feeling the same way. Then we can help each other and not feel so alone. In the process we became closer.
Another part of communication that few people are willing to talk about is sex. Things change after diagnosis and transplant. Talk to your doctor or a certified sex therapist (we found one who was excellent) if there are any issues in that area for either partner. That can strengthen a marriage greatly and enhance communication, self-worth and happiness.
There are a few strategies or ideas that have helped us keep our relationship strong. For example, we make time to do things that don’t revolve around anything medical; take a walk, watch a movie, play a game or go out with friends. As equally important for us is prayer and worship time together. Slowly introduce tasks that the patient can do to contribute to the daily running of the household (paying bills, fixing dinner, doing laundry) so that the patient feels productive and needed. Consider asking friends and family to help with daily chores (grocery shopping, cleaning, medical appointments) so that there is more time for relationship time. Talk to each other frankly about needs and expectations. Get outside help if you need it – from a counselor or pastor.
I believe a relationship can’t help but change after an experience like this. For us, thankfully, it deepened and strengthened our relationship. We know what each is made of now. But it does change the dynamic. We view life differently now. We have experienced life changing drastically from one moment to the next – never to be the same. That changes a person and a relationship. We make and think of plans differently; there is always a caveat. But it also makes us appreciate each other and every moment we have together and every special occasion, even more. We try not to take anything for granted and be very grateful.
The most special part was seeing my husband take on roles that he really hadn’t before, and that just deepened my love for him. For a while, he had to do everything, and he did it all without complaining. He demonstrated his love and commitment to me by doing all the mundane (and extraordinary) things on a daily basis. He was living out the vows he had professed to me 20 years earlier – in sickness and health, good times and bad.
“The line between caregiver and spouse would blur frequently. I would be flushing her picc line one minute and the next minute discussing what to get our dads for Father’s Day.”
The caregiver: Clark’s perspective
The line between caregiver and spouse would blur frequently. I would go from being a caregiver to being a spouse back to a caregiver in the same hour. It all depended on what needed to be done. I would be flushing her picc line one minute and the next minute discussing what to get our dads for Father’s Day. It is hard to distinguish why you are doing or saying a particular thing. Am I making dinner and doing the dishes as a spouse or a caregiver?
It was a little different for me because Wendy was diagnosed with ALL and two years before her transplant she went through HCVAD (a type of chemotherapy regimen) for eight months. The chemo was eight rounds, which required hospitalizations for 5-10 days. The caregiving role after the transplant was not that different from the caregiving role during HCVAD. Of course, I had no idea what was ahead of me as a caregiver. I was totally unprepared.
For me the hardest part of our dynamic was knowing when to be a caregiver and when to be a spouse. There were times when my wife needed one over the other. Today, I would say my role as a caregiver decreases every day. From 2007-2009 I was an active caregiver, but now it is more passive. But I think it will always be part of our relationship. When you are a caregiver for someone you have committed your life to it is hard to erase that thought pattern. Although as time goes on it becomes less and less of a thought pattern.
Communication is an excellent way to maintain a healthy relationship. Making time for each other is also very important. We walk every day together and talk about what is going on in each other’s life. Even though we now have a new normal we still have a normal life, we do the things we did before the transplant.
If I could say anything to other couples in this situation, I would tell them that I know it is hard but do not let the disease or transplant define who you are or who you are married to. This is just another bump in the road of life. I know it is a big bump but you can make it. There is a light at the end of the tunnel and it is not a train. Life will get back to a new normal and the roles of caregiver and patient will fade with time.
This experience has caused us to deepen our relationship and love for each other and there is a sense of satisfaction knowing that we went through hell together and ended up closer than before.
Who is your caregiver? And in what ways did your relationship change? Share your story