Blood and Marrow Transplant (BMT)

For caregivers

A caregiver plays a crucial role in helping a patient through BMT and recovery. As difficult as it sometimes seems, this role is a key component of a full and safe recovery.

Becoming a caregiver
Being a caregiver for a person who’s having a BMT can be a lifechanging event. If you have offered to be a caregiver, you will be helping someone you care about in a way that may lead to personal growth and added closeness. You will need to learn to perform various physical tasks. You also will need to take care of yourself emotionally and physically while trying to support the patient whose emotions can fluctuate a great deal after this major procedure. Click here from information on taking care of your emotional well-being and dealing with your feelings while you are a caregiver.

Prepare yourself in advance for the caregiver role. If your loved one or spouse is the patient, it is natural for you to become the caregiver. It is probably something you want to do. But you should be honest with yourself about your strengths and weaknesses. Take a few minutes to take the Self-Assessment for Caregivers to help you take a look at your strengths and goals as you plan for your caregiver role. The assessment can also help you identify areas where you will need help. Be sure to ask for help when you need it. You will be called on to provide emotional support, practical tasks, and simple medical procedures for the patient. Get help with these things in whatever way best supports your efforts.

Caregiving requires a significant time commitment. The patient needs help at many different times, for everything from driving to appointments to preparing meals. As your loved one recovers, the time commitment should ease. But for many weeks you may need to devote most of the day to the patient’s needs. A caregiver’s tasks include:

• Providing emotional support and encouragement
• Going with the patient to appointments
• Communicating with transplant team members and gathering information
• Assisting with the scheduled oral and intravenous medicines after hospital discharge
• Keeping track of the medicines taken after hospital discharge
• Keeping an eye on the patient’s condition and identifying any changes or new symptoms
• Caring for the patient's central venous catheter
• Knowing what to do in an emergency
• Calling for medical help when needed
• Communicating with other family members and friends
• Keeping a clean and comfortable home environment
• Helping to prepare or provide meals for the patient
• Providing transportation to and from the treatment center or clinic
• Helping with medical and hospital bills, insurance paperwork, and financial planning for the family

How can caregivers take care of themselves?
Being a caregiver can shift your role. Caregivers become extremely knowledgeable and attentive to the tasks that they perform for their loved ones. They are often separated from their children or family during the transplant. Preparing for this will be helpful to the whole family.

Being a caregiver for your loved one is demanding. It can shift your primary role to that of medical caregiver. Caregiving is a demanding job, one that can’t be done well if you’re stressed and tired. There are things you can do to take care of yourself.

The more you know, the more comfortable you’re likely to be with the role. Take advantage of the classes and training offered by the transplant program.
Make sure you take some time for yourself. Get away from the hospital or house once in awhile. Talk with friends. Go to a movie or take a long walk.
Turn to other people for help when appropriate. Even if you are the main caregiver, other friends and relatives may be able to help with such things as preparing meals or providing transportation.
Communicate openly and honestly with the patient about your needs as well as his or her needs.
Take advantage of available resources, such as transplant program support groups, your social worker, or a chaplain or other spiritual adviser.

Caregiver self-assessment
As the Caregiver for a Blood and Marrow Transplant (BMT) patient you are playing a very important role. You will be providing assistance and support during the patient’s treatment and recovery process. Your efforts and your presence are essential to transplant success. And your role is valued and respected by everyone in the University of Minnesota Medical Center BMT program.

The medical team and the patient rely on you for assistance and for information about a variety of issues. Your role can be physically and emotionally demanding. We strongly encourage you to devote time and attention to your own personal needs. Self-care is critical to your ability to provide care for the patient.

As you plan for your own caregiving experience, please take the time to reflect on your current satisfaction with various aspects of your caregiving role. It is important to note that few people are ever fully satisfied with all aspects. You can use this assessment tool for your own private reflection. It is also a good tool for self-care goal planning.

Caregiver Self-Assessment Tool
Consider your current status with each of the following statements. Mark if you are very satisfied, somewhat satisfied or very unsatisfied with each one. You can print out and use the version of the assessment below, or click here for a pdf version of the assessment tool.

The areas that you are able to circle that you are "very satisfied" will be your areas of strength. Pay attention also to the areas that you circle as "somewhat satisfied" or "very unsatisfied." These may help you to identify areas on which to focus your self-care efforts. They are also areas in which you may want to ask for help. After you complete the assessemnt, consider listing your current strengths as a caregiver and your current goals as a caregiver.

VS – Very Satisfied
SS – Somewhat Satisfied
VU – Very Unsatisfied

I am eating a healthy balanced diet.
VS    SS    VU

I am getting at least 7-9 restful hours of sleep each night.
VS    SS    VU

I have the information that I need in order to understand my patient’s disease and treatment.
VS    SS    VU

I am participating in regular physical exercise/activity.
VS    SS    VU

I devote time and attention to my emotional and spiritual health.
VS    SS    VU

I regularly practice some form of relaxation.
VS    SS    VU

I am managing my stress and am not misusing drugs or alcohol.
VS    SS    VU

My financial needs are being met.
VS    SS    VU

I am able to set limits on the demands of my caregiver duties.
VS    SS    VU

I am receiving adequate emotional, spiritual, and social support.
VS    SS    VU

I allow myself to take regular breaks to pursue my interests, hobbies, and other relationships.
VS    SS    VU

I make and keep medical and dental appointments for myself.
VS    SS    VU

I am able to meet my non-caregiver related responsibilities.
VS    SS    VU

I am able to state my needs and questions to the medical staff involved in my patient’s care.
VS    SS    VU

Caregiver contract for autologous BMT

Caregiver contract for allogeneic BMT

Caregiver roles and expectations
A caregiver is a key component to a full and safe recovery. A caregiver may be a either a family member or friend. It needs to be someone who can be with the person receiving a stem cell transplant for the duration of treatment. Caregivers can rotate, but are needed to support the patient throughout the treatment process. It is important to start deciding who can fill this role prior to coming to the transplant center to begin a work-up evaluation.

We encourage the caregiver to be present during as much of the work-up evaluation process as possible. This will give the caregiver the opportunity to become fully informed about the upcoming treatment process. The caregiver can also help the patient with the great amount of information provided at this visit. In addition, the patient will need a driver after a bone marrow biopsy or any other procedures that require pre-medications.

Being a BMT caregiver requires a significant time commitment.  A caregiver’s responsibilities may include:

• Assisting with the scheduled oral and intravenous medications after hospital discharge.
• Keeping an eye on the patient’s condition and identifying any changes or new symptoms.
• Caring for the patient’s central venous catheter.
• Knowing what to do in an emergency.
• Calling for medical help when needed.
• Maintaining a clean and comfortable home environment.
• Helping to prepare or provide meals for the patient.
• Providing transportation to and from the treatment center or clinic.
• Going with the patient to medical appointments.
• Communicating with transplant team members and gathering information.
• Helping with medical and hospital bills, insurance paperwork, and financial planning for the patient family.
• Communicating with other family members and friends.
• Providing emotional support and encouragement.

Education and support is provided to the caregivers so that you can be confident in your responsibilities. Having a caregiver present is an essential safety precaution and enhances the patient’s emotional well-being. It is also important that caregivers take care of their own health and emotional well-being. Your BMT team is here to support you in this challenging experience.  Please let us know your questions and concerns.

Change in roles, changes in the family
"Family" can be used to describe many different relationships including those between parents, spouses/partners, children, siblings, extended family members, coworkers, friends, neighbors, and other community associates.

As family relationships develop, members take on different roles and responsibilities. These roles help to maintain balance and functioning within the family. Whether you discuss it openly or not, family members usually know who plays what roles. Roles and responsibilities can change, however, when there is major stress on a family. Sometime one person, for example an ill person, must give up their usual role and take on other roles. This forces changes on every member of the family.

Imagine that your family is like a mobile that hangs over a child's crib. Every person must play certain roles in order to keep things functioning and in balance. If one person or one piece of that mobile changes position everything gets out of order. The only way to get the mobile or family in balance again is for everyone to adapt to the change. This type of change and adjustment takes time. Things will never be the same in your family. But eventually you will find a "new normal" and adapt to the changes that you are facing. It is very common for life to feel out of control and chaotic as you are adjusting to changes. This happens when someone in your family has a serious illness.

It can be very helpful to:

• Talk about the changes that are happening in your family. (Talk both to your family members and people outside of the family.) It can be helpful to just acknowledge what is happening and how it feels.
• Be aware of the feelings that may be related to changes in the family. For example you or other family members may feel afraid, threatened, relieved, angry, overwhelmed, etc. about role changes.
• Understand that not every member of the family will feel or think the same way about the changes. Some family members may feel resentful while others are energized for example.
• When a family faces a major crisis like serious illness and BMT, members often work together to care for and support each other through difficulties. When this happens it can provide opportunities for wonderful intimacy, honest communication and shared memories.

Unfortunately most families and relationships have areas of stress or tension. These can make coping with a crisis very difficult. Under normal conditions families can cope with these tensions. However, under stress they can develop into major strains on family functioning. It can feel like your family is totally falling apart. You may wonder how your relationships will possibly survive this crisis. The stress of serious illness can be especially challenging in a family where there is a history of abuse, addiction or little available support. It is important to know that you can make changes so that you are more satisfied with how your family is functioning. This may be a time to seek out resources from a counselor, social worker, or spiritual leader.

The changes and stress related to serious illness affect every member of a family. This can happen because of changes in his or her roles and responsibilities. Or it can happen because the roles and responsibilities of other family members have changed.

Examples of changes:

• An adult child needs to care for parent or sibling who was previously independent.
• A child or teen must take on additional household responsibilities.
• There are changes in the amount of attention/nurturing available to other family members.
• One family member is no longer able to manage the physical tasks he or she once did.
• There are changes in who manages family finances or social scheduling.
• The person who was the "foundation" or source of support and stability in the family is ill.
• The family may be separated by geographic distance over long periods of time.
• The family may be forced to make decisions in ways that are very new to them.
• Keep in mind that every family is unique. Avoid comparing yourselves to other families. Even though it can be difficult, please, ask for help when you need it. There are supports available to help you and your family through this difficult time.

Creating positive experiences
People going through treatment for a life-threatening illness may understandably focus their attention on their problems. As a result, they may withdraw from the people and activities they normally enjoy. For example, they may stop seeing friends or lose interest in a favorite hobby. The quality of their lives may suffer.

On the other hand, pleasant, satisfying experiences help people cope with illness and treatment. Having fun makes people feel better physically and emotionally. When people regularly do things they enjoy, they keep a positive outlook on life and are less likely to become depressed.

Helping the patient to balance his or her problems with life enjoyment is one of the most important jobs you have as a caregiver. Try to arrange as many pleasant, positive experiences as possible, even during the time spent in the hospital and clinic.

Be sure to take care of yourself as well. As a caregiver, you can also become preoccupied with your problems. You should remember to do things you enjoy, in order to maintain a positive outlook. Caregivers who think only about the needs and problems of the patient are more likely to become upset and discouraged. Renewing yourself can help you to keep caring for your loved one.

When to Get Professional Help
What if the person going through BMT feels that it is impossible for him or her to have any positive experiences? Is the patient also feeling sad and depressed? If so, then professional help is needed.

What You Can Do To Help
Here are some examples of positive experiences that can help prevent depression and maintain a good quality of life:

Enjoyable activities with other people:

• Talking about sports (etc.) with a friend
• Shopping with a friend
• Going to the movies with the family
• Calling a friend on the phone
• Playing cards with a friend
• Playing with children
• Gossiping with friends
• Going for a drive with a friend

• Cooking a meal
• Engaging in a hobby
• Solving a crossword puzzle
• Writing a letter
• Talking to someone else who needs a friend
• Playing a musical instrument
• Writing a poem

Activities that make you feel good:

• Watching a favorite movie (funny) or TV program
• Taking a ride in a scenic area
• Listening to a favorite kind of music
• Reading a favorite magazine
• Taking a walk
• Hugging someone you love
• Eating a special food
• Saying a prayer
• Playing with a pet
• Going to a religious service
• Reading a joke book

Pay Attention to Positive Experiences

Talk about pleasant experiences as they happen during the day. It is easy to notice and think just about unpleasant experiences when you are under stress. When this happens, it can make you and the person you care for depressed. Talking about pleasant things as they happen helps keep a balance between pleasant and unpleasant experiences.

Set aside a special time each evening when you and the person with cancer talk about the good things that happened that day. Think back over the day and talk with the person with cancer about everything that was pleasant. Be sure to include all three categories: pleasant things that happened with other people, activities that gave a sense of pride and accomplishment, and activities that made you (and the person you care for) feel good.

Make lists of pleasant experiences. Keep these lists and read them over from time to time to remind you about the good things in life. Sometimes it helps to think of activities that have been pleasant and enjoyable in the past. Decide what part of the activities the person going through treatment can do now. If doing the activity is not possible (such as playing a sport), is there a part he or she can still engage in? Is there a similar activity that she can do? Can he or she can talk about how to do that activity when the treatment is over?
Here are some ideas of how activities can be modified.

Shopping with friends—Go through catalogs with a friend or shop on the Internet
Watch son or grandson play baseball—Watch baseball on TV with son or grandson
Going to a friend’s home to play cards—Invite friend to come play cards with you
Spring cleaning—Clean or rearrange your room
Mowing the lawn—Arrange with someone to mow the grass for you
Sailing—Build a model sailboat
Going out to hear music—Play a favorite CD
Go visit relatives from out of town—Go through picture albums and maybe call them on the phone
Go to the movie with a friend—Invite friend to come watch a video
Myth and Truth

Myth: "No activity is pleasant anymore."

Truth: No matter how depressed or upset someone is, there are always some activities and thoughts that are pleasant. This is true even if it is only for a short time. Notice the good things that happen each day, even if they are small. Try different activities until you find something pleasurable. Remember, if a person has seemed depressed for several weeks, they may need professional help.

Myth: "When you are sick, a lot of bad things happen and you can’t do anything about them."

Truth: There are ways to balance your positive and negative experiences.

Myth: "For a caregiver, there are so many problems to deal with that one can’t find time for pleasant activities."

Truth: Family caregivers need to keep up pleasant activities as much as the person going through treatment. Pleasant activities are especially important for people who are under stress! That is when you need them the most. If you just think about problems, you and the person you are caring for will become sad and depressed.

Myth: "As a caregiver, I feel guilty if I enjoy myself when the person I’m caring for feels sick and needs my help."

Truth: You will be a better caregiver if you are in good spirits and do things you enjoy. Scheduling pleasant experiences for yourself is part of being a good caregiver.

Don’t wait to start scheduling pleasant experiences. Begin before you or the one you are caring for becomes depressed or feels overwhelmed with problems. Ask others for ideas and be creative.

Examples of positive things that you can notice:

Enjoyable things that happened with other people: Jerry said I looked good today; Martha went out of her way to get my medicine; the nurse was very understanding about how I felt; Tom did the dishes without complaining; Mary and I had a good talk; Bill and I talked about the old days.
Activities that gave a sense of accomplishment: I beat Charlie at chess; I finished knitting the arm to the sweater; I cleaned out my bureau drawers; I balanced my checkbook; I walked farther than I did yesterday.
Activities that make me feel good: I saw a robin; I enjoyed the shadows that the sun made coming through my window; I really laughed at the old Lucy show rerun; I encouraged Bill who was feeling down today.

Taking care of your own well being
When a loved one has a serious disease, the focus naturally shifts to him or her. The patient needs a lot of emotional and physical support through the long treatment and recovery process. It’s easy for you—their loved one—to fade into the background. Friends and other relatives call or visit the person who is ill. All of your conversations may end up being about the patient’s treatment and progress.

Sometimes you, too, need a chance to have a good laugh or cry. You need to be able to talk about what’s scaring you or making you angry. Sometimes you just need a break. It’s important for you to recognize and talk about your own feelings, but you need to turn to other people besides your loved one.

Some of the emotions you may feel are discussed below. Maybe you’ll feel all of these—or none of them. Remember that everyone reacts differently during times of stress.

Fear
You might be fearful about whether your loved one is going to live. You may fear that you don’t have the strength or courage to go through illness, treatment, and recovery. If the patient is your spouse, maybe you’re afraid you’ll be left alone without enough money to keep your home or take care of children.

You may simply fear the unknown. What happens next? Will you be taking care of an invalid, dealing with death, or working to get your family lives back on track? When will life return to the way it was? Some people are great at handling the most awful circumstances but are uncomfortable in situations where they can’t predict the outcome.

The saying that "we have nothing to fear but fear itself" probably seems a bit simplistic for the complicated situation you find yourself in. But fear is crippling. It tends to stop you from doing things that can improve your situation.

Getting information is one of the best ways to deal with fear. It won’t take away all your fear, but it will help you control it. If you’re worried about money, now is a good time to get the details about your savings and expenses Talk with a financial adviser or social worker. If you’re worried about the treatment, ask the doctor questions and do your own research. Reassurance from others may help.

Tell your loved ones something about your fears, but be cautious about sharing too much. Most caregivers have a lot of fears. Knowing that you are not alone with your feelings may be important to you—and may actually help. But  your loved ones may not be in a good position to support you. Find a support group where you can talk about your fears and hear how others have faced theirs.

Resentment
You may have some feelings of resentment toward your loved one. Yet you may wonder how anyone could resent someone who is ill. You may not want to talk about this feeling of resentment, fearing that people will think it is selfish, insensitive, or mean to resent a loved one who is ill and may die.

But resentment in this situation is not uncommon. Perhaps you blame your loved one for allowing the illness to develop, even when you know that’s not what happened. You may resent the time and energy you are expected to give.You might even resent the attention that the patient gets, while you are exhausted. Your life has had many difficult changes since finding out about the disease. You may resent your loved one for these unwelcome changes. It may be that you are resenting fate, your higher power, or the healthy people you know.You may want to shout about how unfair it all is. Why is your loved one ill and not someone else?

You may be experiencing these feelings and have a difficult time expressing them to others. Remember that resentment is a hard emotion to conceal or bury. If you feel it, at some point you are likely to express it—directly or indirectly. If you’ve bottled up this feeling for a while, it can come pouring out in an ugly way that may be hurtful to others. A better way to cope with your feelings of resentment (or any difficult feeling) is to talk with a trusted friend, a counselor, or others who have been through a similar experience. Your hospital and clinic have support groups and can refer you to counselors or therapists who can help you.

Abandonment
Although you may be spending all of your time—or what seems like all of your time—with your loved one, you can still feel as if you’ve been abandoned. You can’t really be part of his or her life in the same way as before the illness. The patient is on a  "journey" of illness. You can’t really be part of it if you aren’t ill yourself. The patient’s full attention is focused on the disease, the treatment, and what this means for the rest of his or her life. Although the person loves you, he or she is "gone" for much of the time—just when you really need support, love, and understanding.

Although your loved one may need a lot of your time, you can take a few hours here and there to be with other friends or family members. Surround yourself with people who care about you. Take breaks from caregiving and ask others to occasionally relieve you. You might, for example, go to lunch with a friend, read a book or newspaper, watch a video, spend time with family, or simply take a walk.

Try not to abandon your loved one emotionally because you feel abandoned. Strive to be close. Do this in positive ways (finding things to laugh about together or reading out loud together, for example). Talk about the evening news or how proud you are of your child. Hold hands and hug and use loving words. Your life together is more than this disease and recovery.

Sadness
It is very natural to feel sad when someone close to you is ill. You see one of the most important people in your world going through a rough time. You may be facing the possible loss of your spouse. There are new emotional and physical demands on you, and it may feel like you are alone.

Things are not normal, and you probably miss normal. You want to pull the blankets over your head and go to sleep. You want to cry. If you need to cry, go ahead and cry. Crying is a healthy release that can make you feel better. If you want to sleep, sleep late when you can. Spend time with friends and family who will understand, comfort you, and be with you in your sadness.

Do try to include some things in your life that make you happy. Go to funny movies (laughter, too, can make you feel better), take walks in pretty places, spend time with friends who are interesting and lively, or read bedtime stories to your children or to someone else’s children.

Depression
Sadness and depression are normal, but depression goes beyond sadness. When you are depressed, you tend to feel a sense of hopelessness. You’re convinced that things will never be good again. Some signs and symptoms of depression include:

A change in sleep habits. You sleep all the time, you wake up too early, or you can’t fall asleep.
A change in eating patterns. You find yourself eating too much, or you don’t feel like eating at all.
Weight loss or gain
Lack of energy
Loss of interest in things you used to enjoy
Feelings of worthlessness or hopelessness
Thoughts about suicide
If you think you may have depression, you need to get help. Depression is a real illness and can have serious effects. People who are depressed don’t always recognize that they are depressed. If friends say you don’t seem to be yourself or ask if you are depressed, pay attention. They are giving you very important feedback. It may help for you to see a professional to determine whether you are experiencing depression. Counseling, along with medicine, could be helpful in treating your depression.

Healthy Ways To Deal With Feelings
It’s important to express your feelings, but you don’t want to let them get the best of you. Consider some of the following healthy ways to express feelings.

Learn or practice deep breathing exercises. Sit quietly for a few minutes each day and pay attention to your own breathing. Try to clear your mind of thoughts and feelings for this time. Just close your eyes, notice your breath, and be aware of yourself in this moment. This is a beginning form of meditation that may bring you some peace and help you get through each day more easily. If you find this helpful, you may want to learn more about meditation.
Talk to yourself about how you feel—and recognize that it’s okay to have these feelings.
Talk to other people. They can give you a reality check and provide support when you need it.
Use what has helped you feel better in the past. If exercise is your way to let out anger, then get to the gym, go for a bike ride, or go for a walk. If pampering yourself helps you deal with sadness, then bring out the bubble bath and the scented candles, or listen to soothing music.
Look to your spirituality. People who have a regular place of worship can find support in going to services. If you are away from home, you may want to find a local place of worship. If your spirituality is more personal and individual, find ways to explore it on your own.
Read inspirational books. A book of meditations or prayer or books about others who have struggled with a loved one’s illness can affirm that you are not alone.

Using the Recreation Center at the University of Minnesota
A Great Way To Relieve Stress
As the Caregiver of a BMT Patient at the University of Minnesota Medical Center, you are eligible to use the University of Minnesota Recreation Center facilities at a reduced rate.

Facilities include swimming pools, racquet courts, gyms, fitness centers with weight training and aerobic equipment, running track, locker rooms, steam rooms, sauna, and more.

If you are interested in having access to the Rec Center, ask your BMT social worker for a referral letter (a social worker letter required for referral and discount).

Click on the following link for more information about the rec center and what it offers: http://www.recsports.umn.edu/