GVHD Caregivers

Being the caregiver for someone who has graft-versus-host disease can be challenging, both physically and emotionally.

Caring for a loved one with GVHD involves juggling many tasks including:

• some of the medical duties that nurses previously handled
• ensuring the patient follows the treatment plan prescribed by the medical team
• acquiring and dispensing the many medications that the patient needs daily
• scheduling and coordinating transportation to many clinic and specialist visits
• monitoring the patient for new or worsening symptoms
• communicating any change in the patient’s condition to the healthcare team
• protecting the patient from sources of infection
• preparing nutritious meals
• providing the patient with emotional support
• managing the usual household chores such as paying bills, childcare, home maintenance, running errands, as well as going to work

The course of GVHD can be uncertain, with lots of ups and downs and unexpected twists and turns. Sometimes it becomes a chronic disease you have to manage and adapt to for longer than anticipated. 

It’s important to build resilience and take care of yourself so that you remain well and strong through the weeks and months ahead.

Take Care of Your Physical Well-Being

To be an effective caregiver, you need to keep yourself in good physical condition. This includes eating well-balanced meals, getting daily exercise, and getting sufficient sleep each night. 

Although it can be hard, try to prioritize your own health. Remember, if you become ill, you will not be able to care for your loved one.

Create a daily routine, with time built in to do things that will keep you strong and healthy, both physically and mentally. 

Think about ways to burn off stress with physical movement, such as walking or yoga. ‘Turn off ’ stress with meditation or prayer, spending time in nature, listening to music, or watching a favorite show.

If you have any health issues, don’t ignore them or put them off. Keeping yourself strong and healthy is important for both you and your loved one.

Gather a Team of Helpers

Don’t try to go it alone. It is hard to manage all the things you need to do for the patient as well as address your own needs. A good support network is essential.

People are often eager to help if they know exactly what you need. Make a list of all the activities that could be done by someone else, and then reach out to family and friends to see who can help. Build in ongoing support, if you can, so you don’t have to keep asking for help.

Can someone occasionally or routinely shop for you? Pick up medications? Take the children to activities? Mow your lawn? Make dinner? Walk the dog?

See if a family member or friend will organize the help for you. Many online programs are available to schedule meals and other help for people with chronic health issues. Some to check out include:

• LotsaHelpingHands.com
• MealTrain.com
• CaringBridge.org

Dealing with Uncertainty

One of the most challenging aspects of being a caregiver for someone with GVHD is the uncertainty - not knowing:

• how long the GVHD will last
• whether it will get better or worse
• how long your loved one will depend on you for help.

Some caregivers view 100 days after transplant as the finish line, but it’s often just the start of a new phase of caregiving. Chronic GVHD usually begins five-to-six months after transplant, so treatment and caregiving duties may be needed much longer.

It is good to be optimistic but realistic as well. Your loved one may get a mild case of GVHD that resolves in a few months. But just in case, prepare yourself mentally for the possibility that you may need to deal with GVHD and caregiving for a much longer period of time.

Take Care of Your Emotional Well-Being

Caring for someone with GVHD is stressful. Fear of the unknown, frustration over things like getting appropriate medical help, wanting support from family and friends, and just plain exhaustion can put your emotional health in jeopardy.

Don’t ignore your feelings. If you don’t deal with them, they will deal with you.

Emotional burnout is common after long periods of caregiving. It’s best to seek help before distress causes other health problems.

Find someone with whom you can honestly express your feelings and discuss your worries. This could be a:

• trusted family member, friend, or religious counselor
• caregiver for another GVHD patient (find one through BMT InfoNet's Caring Connections Program)
• GVHD support group (BMT InfoNet's GVHD support groups)
• mental health professional (see BMT InfoNet's Directory of Mental Health Providers)

Changing Relationships

The role of the caregiver can create a different type of relationship between you and the person with GVHD, at least for a time. 

If you're caring for a spouse or partner, you may find yourself in a nurse/patient role instead of being equal partners. It’s common for differences to arise over how much care you should be providing or how hard you should be pushing the patient to do various activities, which can lead to frustration, resentment, and anger for both parties.

Communication is key. Bottling up frustration is not healthy.

Try using ‘I’ statements, such as ‘I am feeling frustrated’ rather than ‘You’ statements, such as ‘You make me mad’. Think about caregiving as ‘care-partnering’. Work together to name challenges and problem-solve them together.

Encourage the patient to do what he or she can without help so you both maintain as much independence and self-identity as possible. Don’t forget to spend time together doing things you enjoy that are not medical in nature.

Sometimes, relationships with extended family members or friends can become strained. It is difficult for people who are unfamiliar with GVHD to understand how much it can impact daily life and health, particularly if the patient is not showing obvious symptoms. Describing GVHD as a chronic disease, like diabetes or multiple sclerosis, may help others better understand that issues are ongoing.

If extended family members and friends are interested in learning more about what you are going through, you can share this website with them or suggest they order the free booklet Graft-versus-Host Disease: What to Know, What to Do that contains similar information.

Give Yourself the Credit You’re Due

You are a vital member of the healthcare team working to help your loved one recover. Acknowledge the hard work you are doing and take pride in mastering the many tasks that you once may have thought you could not do.

Sometimes, despite your best efforts, problems like an infection may occur, or things don’t go as planned. It can be easy to question yourself and wonder if something you did caused the problem.

Resist the urge to blame yourself. Like everyone involved in patient care, you are doing your best and not everything is within your power to control. Try to show yourself the same compassion as you would for a friend.

Silver Linings

Despite the difficulty of living with GVHD, many people say the experience has some silver linings. Caregiving can feel rewarding and meaningful. 

Some couples grow closer together. Some caregivers find a new sense of how capable they are, despite adversity. Some learn new ways to solve problems or make new friendships. Many describe changes in their perspective and have a new appreciation for life.

Next Page: GVHD Provider Directory