When caring for a transplant patient, take care of yourself, too

Posted January 7th, 2018 by Be The Match and filed in News
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Justin, transplant recipient, with mom and caregiver, Kari

If you are a transplant recipient, please share this article with your caregivers.

Researchers know that transplant caregivers are affected physically, emotionally, socially and spiritually by the transplant process and recovery. But caregivers may be thinking about all they have to do, and not thinking of taking care of themselves. In this article, you’ll find tips to help cope with the many challenges that come with taking care of a loved one who is recovering from a transplant. Plus, Be The Match has many free resources, listed at the bottom of this article, that can help.

Coping with stress

The stress of recovery from transplant affects you, too. And if you become physically exhausted or emotionally overwhelmed, you won’t be able to provide the care you want to give your loved one in the months ahead.

People have different styles of coping with stress. Think about your coping techniques and how they are, or aren’t, helping you. You can do this on your own, but some caregivers find it helpful to get support from others, including professional counselors, to help them learn coping techniques that work best for them.

Here are a few things to remember to help you cope when you feel stressed:

  • It’s normal to have emotional ups and downs
  • Put first things first and let the little things go
  • It’s okay to take some time alone
  • There are people who can help
  • You do many things very well
  • Take a breath in and out

Coping with emotions

Caregiving can bring up a lot of different emotions. And some of them, like anger or guilt, might at first seem wrong, and cause a caregiver to feel ashamed. But it’s important for you to know that all of your emotions are normal and okay. It’s how you cope with them that matters.

Here are some common emotions that caregivers sometimes experience, and some tips on handling them:

  • Feeling sad is normal. But if it lasts for more than 2 weeks, and interferes with your daily life, tell your doctor. It could be depression.
  • If you’re angry, do some self-reflection to figure out why. Knowing the cause might help you think of ways to cope.
  • Transplant has brought about a big change in your life, and it’s okay to grieve the loss of the way things were before. Grief takes time and attention to work through, and professional counseling may help you through the process.
  • No matter how dedicated you are, you might feel guilty that you’re not able to do more. Or, you might even feel guilty if you focus on your own needs. Remember, nobody is perfect and you do many things well. Caring for yourself is as important as caring for your loved one.
  • You might feel alone if friends and family have stopped visiting, or if you think no one understands your situation. Sharing your feelings with someone you trust may help you feel less lonely.

You have your own path to recovery

Because you are focusing so much on your loved one, you might not notice your own stress.

It’s important for you to pay attention to your own health and well-being because severe or chronic stress can cause depression, problems with memory and concentration, tiredness, and other issues if left untreated.

One caregiver put it this way: “I wasn’t really interested in any of the things I used to do. I was so busy trying to make it through each day that I never noticed that I had changed. My doctor explained that I was depressed and overwhelmed ─ and he prescribed anti-depression medicine (which helped). Both my daughters said they were happy to hear me laugh again.”

Sometimes it can help to talk with someone who’s been where you are and gets it. The Be The Match Peer Connect program connects you with a trained volunteer who is also a transplant caregiver. These volunteers can answer your questions and share their own experiences. Visit the website to learn more and request a Peer Connect connection.

Getting help from others

Everyone needs support when they are going through a difficult time. It’s okay to ask for and accept help. Remember, you would want to help your family and friends if they were in your situation.

Reach out to family and friends and let them know that you still need their help once you’ve left the hospital and returned home. General requests such as “Could you watch the kids sometime?” likely won’t help. Instead, ask for something specific such as “Next week we have several appointments. Could you watch the kids next Friday afternoon from 2 to 4?”  If you don’t live close to family or friends, consider asking neighbors, faith community members or co-workers for support.

Also, keep a list of specific tasks you need help with, like:

  • Meals
  • Childcare
  • Transportation
  • Yard work
  • Housework
  • Grocery shopping

Post the list in your home where people can see it, but more important, share it with friends, family, coworkers, or any other potential source of support.  If you use social media or other online support forums, such as Caring Bridge, consider making requests for help there.

Support for caregivers at every step

Remember, you’re not alone. Help is available. Contact the BMT Patient Navigators through the Be The Match Patient Support Center. They can help you get reliable, easy-to-understand information from diagnosis through recovery. They can also help you access one-on-one support through our:

Call or email us to learn about the many other ways we can support you through confidential, one-on-one support from caring experts. We’ll listen and help you find answers. All of our programs and resources are free.

CALL: 1 (888) 999-6743 Monday through Friday, 8 a.m. – 5 p.m. Central Time

EMAIL: patientinfo@nmdp.org

LEARN MORE: BeTheMatch.org/patient

ORDER RESOURCE MATERIALS: BeTheMatch.org/request

Keeping your relationship strong when your spouse is your caregiver

Posted February 5th, 2013 by Be The Match and filed in Patient Stories
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Wendy and Clark have a lot to celebrate these days – 25 years of marriage and Wendy’s upcoming 4th “new” birthday.
 
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.”  
-Clark, caregiver

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