Duties and time commitments of caregivers

[Nancy D]

Getting caregivers during the BMT process is going to be a challenge since my husband is going to need to continue to work--- we need his income, and my mother is commited to taking care of my dad who has colon cancer.

I'd really appreciate some insight as to what is involved so I can figure out what I need in terms of a caregiver team so to speak. I'm actually most concerned while I'm in the hospital. Do I really need someone there with any frequency? What level of time and what are their functions in the hospital.

After the hospital, I live 45 min. from the City of Hope, and I'm assuming that's close enough that I don't need a nearby apt for awhile?

Once I get home, it will be easier to get people in during the day and my husband can be there at night. However, what exactly does the caregiver need to do?

thanks for any insight! nancy

[Marlene]

Hi Nancy,

So much depends on how you do once you're released. When John went through his treatment we had to be no more than 30 minutes away from Hopkins. His treatment protocol called for him to be an outpatient after the initial treatment. During the "waiting period", he was required to have someone with him 24/7, when not in the hospital, in case he should spike a fever. When you have zero white cells and no platelets, things can go wrong and you need someone there just in case. Especially since he had a central line in....that's a prime target for infections that can escalate quickly.

My duties the best I can remember.....Give him his meds; (we had one we had to give through his port which took about 45 min); Do all the cleaning, shopping, cooking, etc.; Take him to daily appointments at Hopkins; Be his advocate; and just be available for just about anything. He took his own temp every 2 -4 hours.

While he was in the hospital or the outpatient clinic, I did not need to be there. That's when I would do my running around. I was always there for rounds. And when things got rough, I was pretty much there all day. We had a great staff at Hopkins. I think the nurse to patient ratio was 1:3. But they modify that depending on the needs of a patient. At one point, John had a nurse dedicated to him. So if the nurse to patient ratio at your hospital is good, then you can probably rely on them more and don't need someone there as much. But I do encourage you to have someone with you during rounds. Every day I helped John shower, took him for walks around the unit and pretty much everything. But you need to know he had a 3-way catheter flushing his bladder and it wasn't easy getting around. So he needed some extra help. If I wasn't there, the nurses would do it for him. So it's not like I had to do all of this. I did go back to the apartment at night unless I felt I needed to be there. There was one night nurse who I was not, and neither was John, comfortable with. ( she was not normally on this ward but she had "critical care/ICU" certification and John needed that level of nurse) So I did stay one night when she was assigned to him. After that, I just reqested we never have her again.

Once we were discharged back to our local doc, I did leave John alone for short periods of time. He did have a white count but still needed red cells and platelets. He still had his central line in. We were at the docs or hosptial 4 -5 days out the week for the first three months after discharge. He still had a lot going on then. I did have to flush his line daily and change the dressing weekly.

ON the opposite end of the spectrum, we met a women who was getting a mini stem cell transplant. It was to be 100% outpatient unless she ran into problems. She was from New England and stayed with her sister who lived fairly close by. Someone would drive her and pick her up everyday. She managed this pretty much on her own. She was her own advocate. Not once did she need to be admitted and seemed to do really well. She had someone with her every night just in case. I was amazed at her courage and strength. (BTW...Her retired husband came down to visit her once. This made me sad)


Hope this helps....
Marlene

[Ruth Cuadra]

Hi, Nancy.

Marlene has given you a very good picture of the caregiver's job. I am sure that part of the reason I am still here is that my husband was such an attentive caregiver--never missing a doctor's appointment, lab test, or treatment and spending all day, 6 days a week for 42 days with me when I was in the hospital for my transplant. There is so much to know and so many details to keep track of that it really takes multiple sets of eyes and ears to keep track of it all.

How much help you need, as Marlene said, does depend on how you do both in the hospital and once you're released. In contrast to John's situation, I did all the maintenance of my central line myself, could shower alone (but preferred to have someone around just in case), and relished my time alone. Hospitals are noisy places. I remember enjoying the comfort of sitting by myself in the quiet at home. Even though I couldn't do the cooking, cleaning, errands etc., I didn't need much supervision once I was home.

Regards,
Ruth Cuadra

[Nancy D]

thanks for the input. it does help.