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Spouses and Caregivers The people who take care of the patient

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Old Sat Nov 25, 2017, 11:33 PM
Michael_Q Michael_Q is offline
Join Date: Nov 2017
Posts: 1
I don't understand this nebulous term "caregiver"!!

I write on behalf of a friend who is about to go through bone marrow transplant. As many have written here, this seems like a nightmare from beginning to end. The prep, the post-op, the recovery....it feels as though the hospital she's using is putting an inordinate amount of demands on her as to what she has to do on her own. They are basically telling her she needs a virtual live-in "care giver" to handle most of what will be her many needs as she recovers both in the hospital for an extended stay, and once she gets home. My big question is, isn't that what the medical insurance and the hospital are supposed to provide?

This woman is in her 60's, is in horrible physical condition, extremely over weight, and has no immediate family who can basically drop their lives and come take care of her for weeks or months. My question is, if this level of constant care is required, isn't there a way to get the insurance to provide a care taker? What do people do who don't have immediate friends and family who can put their lives on hold?

Any ideas or suggestions would be greatly appreciated, believe me. We're just starting down this path with this friend of ours who lives more than 1300 miles from us and we have no idea, nor does she, as to how this overwhelming event is going to unfold.

Many thanks.
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Old Sun Nov 26, 2017, 01:47 PM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 587

Having a caregiver lined up post-transplant is considered by many centers to be necessary before they will even consider doing a transplant. There are some insurance companies that provide some in-home care and rehabilitation services, not everybody has these benefits.

The challenge post-transplant is that you don't necessarily need 24 hour care, but you might. your condition can change in a couple of hours due to low blood counts, risk of infection, being immuno-compromised, and having gone through a pretty rough process.

In my case, I did remarkably well for the first six months, then had about 1 year of continuous problems where I was not fully capable of getting out of bed somedays because i felt so weak, getting to the doctor, as it was not safe to drive, and feeding myself, as I was not hungry and did not want to eat. The most common complication called graft-versus-host disease was called chronic wasting disease because of this last part.

I think that your friend needs to check out the following:

1. What kind of in-home care does her insurance company provide
2. does the hospital have any assisted living/near campus facility that the patient can stay in.
3. Does the hospital have any programs that the patient can apply to if the first items are not available. There are many community resources that may be able to help, and the hospital usually has a list of potential assistance.

I wish your friend best of luck in this process as the transplant is difficult enough without having close social support/family to help.

MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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