Welcome to the Caregivers for BMT, CAR-T and Hematology blog. Here you will find information relevant to you when caring for a loved one before and after cellular transplant or CAR-T therapy. It is intended to give you the education, resources and support to help you care for your patient and yourself during this time.

Public blog

Your local social worker is here to support you through your caregiver journey. Please reach out with any questions. They are here to help!

 

Caregiver Signs of Stress

Often, people who care for others do not recognize the stresses involved in caregiving until they have one or more of the most common symptoms that signal too much stress:

  • Overwhelming feelings of anger, frustration or anxiety regarding a loved one’s needs or the daily caregiver routine
  • Frequent headaches, backaches or colds
  • Insomnia
  • Increased use of alcohol, over-the-counter or prescription drugs or other substances
  • Feelings of grief, hopelessness or depression
  • Diminished sense of humor
  • Loss of interest in your usual activities, such as church, community or social groups
  • Periods of crying or other emotional outbursts
  • Loss of interest in recreational activities
  • Lack of attention to your own physical health (over- or under-eating, avoiding exercise, allowing yourself to become physically run-down, etc.

Caregiving is important work, and the challenges and stressors you face can impact your health and your ability to do that work. As a caregiver, you most likely have experienced stress and one or more of the common symptoms of too much stress.

Identifying the warning signs (irritability, fatigue) of too much stress can help you recognize and deal with the causes of those signs. Then, you can make changes before you become overwhelmed.

Try this exercise to identify what causes stress for you.

First, ask yourself, “What is causing stress for me?” Common causes of stress may include:

  • Having too much to do
  • Uncertainty in what the future holds
  • Family disagreements
  • Feelings of inadequacy
  • Reluctance or inability to say no

Once you have identified sources of stress in your life, you can sort the stressors into groups and decide on the appropriate action. For example, if you have too much to do and too little time, you can manage by asking for help. Learning to recognize, anticipate and offset your stressors is the foundation of good stress management.

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Coping

Positive Thinking and Self-Talk

Some caregivers find it difficult to acknowledge — or are unable to recognize — the strain associated with caregiving. The many responsibilities required of a caregiver can take their toll on one’s self-esteem and can cause negative thinking. Do you criticize yourself or think negative thoughts about yourself or your situation? If you do so regularly, you may be setting yourself up for increased feelings of anxiety or depression that can prevent you from nurturing yourself. This can diminish your capacity to care for your loved one. Avoid self-criticism and negative thinking by acknowledging the important work you do and giving yourself credit for it. If you engage in negative thinking regularly, try these strategies:

  • Replace negative thoughts with positive self-talk. When you find yourself thinking critically about yourself or your situation, replace those thoughts with positive ones. Tell yourself that you are an important part of your loved one’s health care team.
  • Avoid self-critical statements. Focus on your strengths and identify the things you are doing well.
  • Talk to a friend, family member, counselor, or clergy member. Positive feedback and support can help you avoid negative thinking

Self-Care Strategies 

Taking care of yourself should be a priority, but many caregivers find it difficult to take time for even the essentials of self-care. For example, you may find it difficult to take time to prepare and eat balanced meals, get adequate sleep, and take an occasional break from daily caregiver duties. However, it is critical for you to make self-care a priority. In addition to monitoring your stress levels and addressing stressors, make a commitment to focus on your own physical and mental health. Plan to incorporate healthy self-care strategies into your daily routine. Prioritize tasks — decide what must be done now and what can be done later. From the list below, identify at least four things you can do right now to be good to yourself — remember, you want to be able to care for your loved one, so you need to make self-care a priority.

  • Eat at least one healthy, balanced meal every day.
  • Get enough sleep.
  • Ask for help and accept help when it is offered. Prepare a list of things that need doing — this might include shopping, a visit with your loved one, errands, etc. — and let your “helpers” choose tasks that are right for them. Many caregivers may be reluctant to ask for help. However, family and friends often find it rewarding to help loved ones — it’s a way to show they care.
  • Schedule regular breaks from daily duties. Even short outings, quiet time at home, a visit with a friend, etc., can help to revive your spirit.
  • Schedule respite care for your loved one, if necessary, to give yourself a break.
  • Monitor your own health. See your health care provider if you are experiencing any signs of poor health. Make and keep regularly scheduled health and dental appointments.
  • Exercise regularly. Even a 10-minute walk can help lift your mood, get you into a more positive environment and refocus your thoughts, even temporarily, away from negative or self-critical thinking patterns. Talk to your health care provider about an exercise program that’s right for you.
  • Get support from other caregivers. Seek out a caregiver support group in your area. Ask your health care provider about support groups or other resources.
  • Seek supportive counseling, or talk to a trusted counselor or friend if you are feeling overwhelmed
  • Keep a journal

 

Resilience Tools

Gratitude: Gratitude is a positive emotion, recognizing blessings we receive. It is a combination of humility, grace, love, and acceptance. It is not indebtedness. Gratitude is a much purer feeling. It flows without expectations. It is not outcome dependent. Gratitude is non-conditional. It keeps the ego in check. Gratitude helps heal.

How to practice?

    1. Say "Thank you" in the morning. As you awake, before rising, who are 5 people you are grateful for?
    2. Say "Thank you" during the day. Find someone to express gratitude to.
    3. Say "Thank you" at the close of the day. Ponder life's pleasure, or experience, or lesson that day.
    4. Gratitude becomes a way of being... even with those who might irritate us on occasion, even when things don't go our way.
    5. What you focus on expands. Focus on the faults and they will grow. Focus on what you learn from others, and their weakness will subside. Be grateful for the strengths and the weaknesses.
    6. Find an experience for which you are grateful, even though not pleasant.

 

Compassion: Seemingly, the more you relate to another, the more compassion you can feel. It is universal in all religions: everyone suffers; everyone wants to be happy. Compassion is the ability to feel another’s suffering and try to relieve it. Helping another is mutually beneficial. It can elevate your own mood. Perhaps anything other than an expression of love is a call for help. Delay judgment in heated moments. Time enhances compassion. “Do unto others as you would like them to do unto you.” Compassion should be energizing and add meaning.

How to practice?

    1. Be sure to give yourself compassion.
    2. Meditate on compassion: those you love, those you don’t know, those who are difficult.
    3. Consider compassion an opportunity: send a silent “bless you” or “I wish you well.”
    4. Serve another without expectation of return. The joy is in the serving.
    5. Practice compassion. It will grow. It is energizing.

 

Acceptance: Acceptance engages flexibility vs. rigidity. It pursues truth, irrespective of its desirability. It focuses on what is controllable vs. uncontrollable. Acceptance sees things as they are, not as wished to be. It reflects hope, optimism, faith vs. apathy and pessimism. It engages with the imperfect, the undesirable, the uncontrollable. Acceptance is powered by inner balance with passion rooted in calm. Non-acceptance keeps us in a state of fight with ourselves. What we fight we get attached to, making it bigger. Suppression enlarges. Acceptance allows learning from failures, converting experience to success.

How to practice?

    1. Ponder the finiteness of who and what you love. It is natural to be attached to who & what we love. Recognize the finiteness of all things and all people. Love finds its greatest intensity when rooted in acceptance of finiteness. Every moment then becomes unique, special, precious, not to be taken for granted.
    2. Try to be less critical. Too much criticism causes people to run away, if not physically, emotionally.
    3. Have fewer preferences so you can be more accepting.
    4. Choose and know your priorities carefully. Where do you stand?
    5. Accept yourself, recognizing that disease or disability does not have to define you.

 

Meaning: Suffering is pain that has no meaning. Meaning amidst adversity is resilience. To increase joy, discover meaning in your life. To decrease suffering, give your life deep meaning. Each of us means something special to someone else. Sync up your short-term actions to long-term meaning for peace. Meaning comes from social, cultural, religious, philosophical, personal values. Often our meaning comes from our relationships, the same source as our stress. Interact with loved ones daily (short-term) the way you feel deep meaning about them. Meaning comes from doing what you consider meaningful work, whatever that might be. Meaning is personal and individual, coming from understanding oneself and the world. Some believe in God; some in nature; some believe in religion; some in spirituality; some believe in science; some in work, some believe in family, community; some believe in the moment, in the NOW. Whatever one believes in, it can become a sustaining resource in good times and stressful times.

How to Practice It?

In relationship with others...

    • Appreciate others’ struggles ​
    • Be willing to offer help  ​
    • Come closer to others  ​
    • Show emotions more  ​
    • Accept others’ help  ​
    • Connect with them  ​
    • Accept them  ​
    • Forgive them  ​
    • Contribute

 

In relationship with self...

    • Be hopeful  ​
    • Be thankful  ​
    • Make a difference  ​
    • Thrive in adversity  ​
    • Let go of small things  ​
    • Invite new opportunities ​
    • Be willing to change yourself  ​
    • Seek solace in nature, kindness  ​
    • Recognize your meaning evolves  ​
    • Know that your very existence is meaningful

 

Forgiveness: It is a voluntary choice. Forgiveness is a gift from you. It may go to the underserving. Forgiveness is a kindness. Forgiveness is for you, not the forgiven. It lets go of anger, resentment, and hurt. Deep, fresh hurt may take time to forgive. It doesn’t justify, excuse, condone, or deny the wrong. Forgiveness can be mentally challenging. Beware of “pseudo-forgiveness,” which avoids experiencing the negative emotions or hurt. True forgiveness isn’t a shortcut for avoidance of emotions. Holding a grudge often gives an instinctual comfort zone to the owner. Forgiveness isn’t an easy skill to learn and practice, but worth the work.

How to practice?

    1. Lower expectations of others.
    2. Be patient. Deep hurt can take time.
    3. Keep an attitude of internal acceptance if your expectations are not met.
    4. Try not to serve “unforgiveness” from a previous day. It is like stale food.
    5. Know that everyone suffers.
    6. Try to understand the other. Often an expression that’s not love is a call for help.
    7. Forgiveness lets you put more energy into the future, not the past.
    8. Selfish motives to forgive are ok: to heal yourself, to stop your pain, to disempower the other.

 

Relationships: Your tribe is made of your friends and relatives, sharing these characteristics:

    • They understand you.
    • They are honest with you.
    • They accept you as you are.
    • They help provide you meaning.
    • They desire nothing but the best for you.
    • There is an aspect of you that they admire.
    • They know you are imperfect and are okay with it.
    • You consider their success yours and their suffering yours.
    • They consider your success theirs and your suffering theirs.

How to preserve it?

    1. Play together.
    2. Be flexible in your preferences.
    3. Be gentle when you have to say “no.”
    4. Never let relationships sour because of trivial events.
    5. Do not accumulate small, low-grade irritations. Fix them.
    6. Actively engage your tribe so it doesn’t slowly wither away.
    7. Be present. When hearing, truly listen. When looking, truly see.
    8. Try to understand others before expecting them to understand you.
    9. Use kind language. “A compliment a day keeps the counselor away.”
    10. Find meaning even in an argument. Is a particular point so important?
    11. Use language that focuses on you, not on them, the future vs. the past.
    12. Criticize sparingly. When necessary, choose right time. Don’t globalize.
    13. Pass all words through old Sufi teaching: Is it true? Is it kind? Is it necessary?
    14. Make more deposits than withdrawals in the other’s emotional bank account.

Source: Resilience Principles (MCS15082)

Video on Resiliency: 

 

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Relaxation Techniques

Autogenic Relaxation Technique

Perform the relaxation technique at least twice each day for 10 to 20 minutes each time.

  1. Find a place where you will be free from interruption or outside stimulation.
  2. Choose a focus word, phrase, or image that you find relaxing.
  3. Sit quietly in a comfortable position.
  4. Close your eyes.
  5. Relax your muscles, starting at your head, working down your body to your feet.
  6. Breathe slowly and naturally. Focus on your word, phrase, or image.
  7. Continue for 10 to 20 minutes. If your mind wanders, resume concentrating on your breathing and your focus word, phrase, or image.
  8. After the time is up, sit quietly for a few minutes, first with your eyes closed, then with them open.

Progressive Muscle Relaxation

Perform the relaxation technique at least once or twice each day for 20 to 30 minutes each time.

  1.   Find a place where you will be free from interruption or outside stimulation.
  2. Loosen tight clothing, belts and jewelry. If you wish, remove glasses or contacts.
  3. Concentrate on relaxed breathing techniques for at least two minutes before beginning progressive muscle relaxation.
  4. Tense each of the following muscle groups for at least five seconds and then relax for at least 30 seconds. Repeat before moving to the next muscle group. Focus your attention on the sensations of tension and relaxation and the difference between the two.
    • Upper part of face — Lift eyebrows towards ceiling, feeling tension in your forehead and scalp. Relax. Repeat.
    • Central part of face — Squint eyes tightly, wrinkle nose and mouth, feeling tension in middle area of your face. Relax. Repeat.
    • Lower part of face — Clench teeth and pull back corners of mouth out towards ears. Feel tension in your mouth and jaw. Relax. Repeat.
    • Neck — Gently touch chin to chest, feel the pull in back of neck, spreading into your head. Relax. Repeat.
    • Shoulders — Pull shoulders up towards ears, feeling tension in your shoulders, head, neck, and down your back. Relax. Repeat.
    • Upper arms — Pull arms back and press elbows in toward sides of your body. Try not to tense lower arms, although there will be some overlap. Feel the tension in your arms, shoulders, and into your back. Relax. Repeat.
    • Hands and lower arms — Make a tight fist and pull up wrists. Feel tension in the hand, knuckles, and up into the lower arm. Relax. Repeat.
    • Chest, shoulders, and upper back — Pull shoulders back as if trying to make your shoulder blades touch. Relax. Repeat.
    • Stomach — Pull stomach in towards your spine. Relax. Repeat.
    • Upper legs — Squeeze knees together and lift legs off chair/bed. Feel tension in your thighs. Relax. Repeat.
    • Lower legs — Raise feet toward ceiling while flexing feet towards your body. Feel tension in your calf area. Relax. Repeat.
    • Feet — Turn feet inward and curl your toes up and out. Relax. Repeat.

Source: Relaxation Techniques (MC1149rev0719)

 

Meditation Videos

6-minute guided meditation:

2-minute grounding meditation:

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Caregiver Support Group and Peer Connection Resources

Individual Counseling Resources

    • Offers limited free counseling sessions with a licensed social worker.
    • Database to find therapists. Can search by zip code, insurance, types of therapy, and more.

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Palliative Care

Palliative care is team-based care for people with serious illnesses. Specialists work with you to address all of your needs — the physical, emotional, social, and spiritual aspects of life. The goal is to make living with your illness better for you. In fact, palliative care has been shown to help people with serious conditions live longer.

Why choose palliative care?

Choosing palliative care is a positive step in your health care treatment plan. Palliative care helps to: • Reduce symptoms that bother you.

• Improve your quality of life, following your wishes.

• Support the family members and others who help you manage your condition. Making the choice for palliative care means:

• You may continue to receive medical care for your illness. This includes care that could help slow or cure your disease or condition.

• You don’t have a time limit for receiving palliative care. Your care team will continue to work with you as long as you need their help.

Palliative care has two equally important goals: to relieve your symptoms and to improve your quality of life — no matter what other care you get.

What Symptoms Does Palliative Care Treat?

Specially trained palliative care providers work closely with you, your primary care provider and any other health care providers you see, such as a cardiologist or an oncologist. Together, your palliative care team can treat a wide list of symptoms or conditions. Some are listed here:

  • Pain
  • Nausea
  • Trouble sleeping
  • Fatigue
  • Loss of appetite
  • Breathing problems
  • Constipation
  • Anxiety
  • Depression
  • Emotional distress
  • Spiritual questions or distress

Caring for these symptoms can help you gain strength to carry on with your daily life. It can improve your ability to handle your medical treatments. And it can help you better manage your health care by helping you think more clearly.

What Services Can You Get?

Some services are provided by members of your palliative care team. Other services can be ordered by your physician and provided by other health care providers. Examples of this include radiation and surgery if needed. Your palliative care team works with all of your health care providers to address your care needs. Some common services used by people getting palliative care are:

  • Medications, including prescription and over-the-counter pain and anti-inflammatory medications.
  • Nerve block(s) to decrease pain.
  • Breathing and relaxation exercises.
  • Massage and acupuncture to help lower your anxiety or pain.
  • Radiation or surgery to shrink or remove a tumor.

It's a Health Care Partnership

Palliative care is a team approach to health care. The team includes trained palliative care specialists — a physician, a physician assistant, a nurse practitioner, a nurse, and a social worker. A massage therapist, pharmacist, nutritionist, chaplain, and others may also be part of your care team. Team members spend as much time as needed with you and your caregivers. They help you understand your treatment options and goals. And they support you and your loved ones every step of the way.

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Crisis Care/Suicide Resources

If you notice any of the following feelings in yourself, please reach out for help fast.

  • Feelings of sadness that seem too big to handle or that don’t go away over time. Call your health care provider to talk about this. He or she may also suggest that you talk to another health care provider.
  • Trouble controlling your anger. Call your health care provider. He or she may also suggest that you talk to another health care provider.
  • Thoughts about suicide. Call 988 or 800-273-8255, the National Suicide Prevention Lifeline. Then call your health care provider to get help right away.

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