International MPN News, Science & Opinion

Calling All Caregivers


Caregiving Stories Needed

For a coming MPNforum series we would like to hear from people who are the caregivers for their loved ones. Some have posted about the illness of the one they care for, but we want to know what it is like to do the caregiving. Caring for someone with a myeloproliferative disease can be different. If you would like to remain anonymous, that is okay. Please send your comments to ourMPNforum@gmail.com so can plan future articles based on actual responses and stories.

The following questions might help you in your response, but don’t feel that you are bound by them:

  1. What is the hardest part?
  1. How do you handle time and scheduling pressures?
  1. Do you feel you were adequately prepared in the beginning to take on this job?
  1. Did you have to go through a learning curve about the illness?
  1. Where or whom do you most often turn to for support?
  1. Does faith help?
  1. How is your health?
  1. How do you juggle your own lives and dreams with responsibility to another?
  1. Do you miss the person he/she used to be?
  1. How would you describe your overall caregiving experience?

Thank you so much. Your answers may be what will help another caregiver.

Barbara Beckman

A hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles. Christopher Reeve

Comments on: "Calling All Caregivers" (3)

  1. Dolores Reed said:

    In reference to question #9 I agree with all that Zhen has written. Once a person is diagnosed with MF that person is forever changed. Do you miss the person he/she used to be. in my case the answer is NO. The person doesn’t change they are still the same but now they have a incurable disease. The way of life is what changes instead of looking towards a future it becomes looking at how long will they survive. A closeness, a more compelling bond takes hold because both know that it is now a day to day way of life. What I do miss is that my husband is no longer here at all.

  2. That’s a good question, Alison. Both yours and question 9 itself. I don’t know if Barbara will be able to respond — she has a personal family matter demanding her attention right now — but I can tell you how I read it. From the time of confirmed diagnosis, the advent of a rare and threatening disease has multiple impacts on the patient — emotional, physical, spiritual, psychological. At acute stages the disease occupies more of the person’s field — and caregiver’s time and energy — but pretty much along the whole continuum of MPNs, there are ways this disease affects the indivdual and close relationships. It could be minimal, shrugging off the dx and pushing it to the background between CBCs or phlebs. Or it could dominate the individual — stimulating growth and appreciation for life and love or turn someone bitter and withdrawn. We all have survival strategies. Hell, amoeba have survival strategies. When threatened with an MPN that strategy is likely to produce significant changes. The response of caregivers can help tip the balance in either direction. Maybe the greatest use of Barbara’s article will be sharing those actions that work and alerting caregivers to those responses that may not.

  3. What does number 9 mean?

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