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13 Tips For Caregivers From A Patient’s Perspective

I was asked to speak to the group of caregivers who had family members at Northside Hosptial’s inpatient BMT unit and the BMT outpatient clinic.  Both programs are well known to me; I’ve been a patient at Northside Hospital BMT multiple times and continue to be a patient at the BMT clinic.  The request was for me to tell “my story” and to talk about Be The Match, the international registry for bone marrow donation.

Note: BMT= blood and marrow transplant

As I thought about how to approach the talk and my audience, I decided telling my story was not the topic. Caregivers need and want a sense of hope that their family member will be okay. They don’t want or need to hear another story of how blood cancer affected yet another individual; they have their own story to grapple with. The caregivers in this group were fairly new to the caregiver role because their family member had recently been diagnosed with high-risk blood cancer and told a stem cell transplant (or bone marrow transplant) was needed. These caregivers are still reeling from the suddenness of the diagnosis, the diagnosis itself, if the patient is going to survive, and wondering how they (the caregiver) is going to do it all.  And that’s when the idea of giving caretaker tips in a conversational style was decided.

So, here are 13 Tips for Caregivers of Stem Cell Transplant Patients:

  1. Take good care of yourself, just like the care you give your loved one. The patient will depend on you 100% so make sure you take scheduled downtime, me-time, respite care. Establish this routine early and stick to it. Burn out happens insidiously so take control early and prevent burn out entirely.
  2. The number one task in keeping your patient free of infection is sanitize, sanitize, sanitize. That includes every surface you think your patient will touch or sit on. These may include doorknobs, cabinet hardware, countertops, tables, etc. This is especially important within the first 6 months when patients are the most vulnerable. Keep a canister of Chlorox Wipes or Lysol Wipes handy in the car and several throughout the home, and in a small ziplock bag in your personal bag.  Establish a daily routine of sanitizing surfaces once or twice a day and stick to the schedule. When I was hospitalized for 4 weeks, the nursing staff told me most patients get readmitted to the hospital for infections. Although I was readmitted 4-5 times post-transplant, it was never for an infection and I attribute this to my husband and brother for maintaining an ongoing sanitation routine.preparing-for-a-stem-cell-transplant_handwashing-technique
  3. Follow your transplant team’s instructions, period. They are expert at treating high-risk blood cancers and are successful in what they do.
  4. Research and read about the diagnosis and treatment of your patient’s particular high-risk blood cancer. In so doing, this will help you ask informed questions and help with the outcome of your patient.
  5. The number of prescribed medications to be taken at home will be overwhelming, especially when the patient goes from zero meds pre-transplant to 23+ post-how-to-prepare-for-a-stem-cell-transplanttransplant. A handy tool is to create a checklist in Excel of every medication with the times each medication is to be taken. When you are dealing with 20 -25 medications to be taken at home, it is very easy to lose track, and missing or forgetting one of these medications is NOT an option. Also, medications change quickly depending on the patient’s needs and you, the caregiver, will be updating the medication checklist often. If you don’t use Excel, develop a checklist method that is clear and helpful for you and your patient.
  6. For the patient, following the Food Safety Diet is imperative. All food must be heated to a high temperative. For raw fruit and vegetables, buy organic but still wash with soap and water or use a veggie wash. Why? Organic foods still have bacteria on surfaces and need to be scrubbed prior to eating.
  7. Stockpile frozen meals for the family.
  8. Protein intake is important for healing. Have Orgain, a high protein nutritional supplement available. Orgain was developed by a physician who had gone through cancer treatment and found a high protein organic nutritional supplement lacking. It is available in vegan and milk-based options.  An easy alternative to Orgain is peanut butter. For me, I switched between Orgain and peanut butter…it’s better to have options than none!
  9. Take notes when the transplant team (mid levels, physicians, nurses, pharmacists) meets with you. Patients are usually sleeping, sedated or won’t be able to remember due to the effects of chemobrain.
  10. Get your “affairs in order”. Complete an ICE (in case of emergency) binder. Attach the patient’s updated will and Advanced Directives to the ICE Binder and let your designated executors know of its location. Click here for the ICE Binder post.
  11. Ask for help. Transplant care is 24/7 care and watch. You may think you can do it all yourself or with 1 or 2 caregivers…you can’t. Don’t be embarrassed or ashamed torespite-care_me-time_caregiving ask for help from your friends, extended family, social circle and neighbors. Care of a transplant patient is all-consuming, and you will need a number of caregivers to assist you. Caregivers have jobs, children, household duties and this is a short list!  Then, add 24/7 care of a stem cell transplant patient to your plate, and it very quickly becomes physically and emotionally overwhelming…ask for help!
  12.  As your transplant patient starts recovering, she/he will begin to look healthy and you may think he/she is “back”…they’re not. Especially if the patient has graft versus host disease. This is one of the tricky things about stem cell transplant patients…we don’t have physical scars, like a surgical incision or other physical manifestation as evidence. Our healing occurs within the body, out of sight. So do not think your patient can start pulling their weight in the household just because he/she ‘looks’ normal.
  13. Don’t give up or lose hope. There are many patients who survived high-risk blood cancers and stem cell transplants, and living their second lives and contributing to society.

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