Wednesday, August 5, 2009

Myeloma transplant - Caregiver

During transplant I needed a minder, an organizer, a caregiver, someone to look after all non medical matters that arose or needed attention during treatment. Of course there was only one person capable of all that, my wife Myra, that’s her occupation. What a peace of mind it was when she said, “Yes, I’ll do that”, and I remain eternally grateful to her.
Her role was invaluable. Though it was my transplant it wasn’t to be all Sid, this was a team effort. We talked it over beforehand, her fears, pressures, the downside, where she would need support and help. How could she take time out and recharge her batteries. Myra had to rearrange her life for 4 weeks, organize time off work. We organized a back up plan if she was sick and had other family members available to help when required.
Myra had to do what I could not do. In the BMTU I lost my independence, needed help and as it turned out was completely wasted for several days incapable of doing anything.
What were my needs, how did I want Myra to help?
Food: Covered in detail in a later posting. That was a big task. We were forewarned that hospital food was inadequate. During transplant Myra prepared and organized palatable food and liquids all approved by the hospital. Where it was stored and how I could access the food when she was not there.
Laundry: Myra did my laundry keeping 3 days ahead. I wanted to use my own pyjamas and underwear as much as possible (a feel good factor) though resorted to hospital issue during bad diarrhea times.
Exercise: I had an exercise programme by the hospital physiotherapist to follow, the aim being not to loose too much condition. Myra encouraged me when the fatigue set in. She kicked my butt for my own good.
Emotions: I needed emotional support, encouragement and monitoring. Making sure I expressed my emotions and did not ignore them. She kept me talking.
Observation: One of Myra’s strengths, observe my attitude, emotions, reactions, moods, health. Keep in touch with the nurses about her observations. She was first to pick up on several treatment reactions.
Diary: I keep a daily medical diary. On the days I couldn’t she would keep the diary up to date.
Communication: Keeping others up to date on my progress. This she delegated out. Several key people were kept up to date and they passed on information to others by phone, text and email.
Networking: Ward matters, talking to the nurses, other patients and caregivers, sharing knowledge and what’s happening in the ward. Creating a friendly environment. As Myra said, “It’s not all treatment, we still have to live.”
Home: Attend to mail, email, keep the home running, and pay the bills.
Clothing: Bring in additional clothing when needed.
Coordination: Coordinating my release, transport home, first week at home and transport to daystay until I could drive myself. (Myra does not drive).
Having Myra as a caregiver during my transplant was a success.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2. [Part 2 link]

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