MDS Caregiver

[Christina Assante]

As my husbands caregiver (fairly new to MDS) I am interested in what other patients have needed from their caregivers (emotionally and physically) – and some of the situations I should prepare for – so that I can take care of him best.

[Sherry Pratt]

I had 2 caregivers. My older sister and my husband. They took turns in 3 week increments. One thing that really makes a difference is keeping a notebook. They wrote down my numbers, my mood, attitude, anything that happened during the day or night. The days often get blurry especially to the patient. Funny movies are a must, and walks, and paying extreme attention to medications when leaving the hospital. They can change daily. Watching for fever, making sure you wash your hands as often as the patient, keeping sick people away from the patient. Preparing the house for the patients return home. Keeping people away at first when you get home. Making people remove their shoes when entering the home and washing hands. Keeping people from bringing you food. Making sure you stay on neutropenia diet when necessary. The list is long for the caregivers. I am forever grateful for mine . I couldn’t be writing the book about my journey without their copious notes!

[Wendy Brizer-Maciol]

Sherry, your post is right on target. My father was independent until last September, when my sister became the weekday caregiver and I on the weekends. In Feb, he had to get a HHA 4 days and in the last few weeks before he passed Way on May 2rth, 24/7 care. It is emotionally tough for us watching our loved one through the rough times. A notebook helps and trying to keep your loved one positive.

[Carol Van Buren]

I was my husband’s caregiver this past year. He just died last month. One of the most important things I learned is that you can’t be aggressive/assertive enough with asking questions. He had been healthy as a horse all his adult life and then last summer grew progressively short of breath and week to the point of having emergency hospitalization at which time he had bone marrow biopsy and MDS diagnosis along with pancytopenia. With pancytopenia he was low on all 3 cell types – white cells, platelets and red blood cells. He had transfusions 2-3 days a week – at first the doctors thought it was caused by latent Lyme disease and toxoplasmosis infections. IT took 2 months to treat those (which chewed up a lot of time). Then a months trial of prednisone – not benefit. Then 4 months on vidaza (chemotherapy) which just made him sicker. By the time we were finally referred for bone marrow transplant (the only cure) it was too late. He had over 10 hospitalizations and basically lived at the hospital most of the time any way with the need for such regular transfusions. Whenever we asked the doctor point blank his prognosis and specific MDS diagnosis (as you know there are many types) this issue was sidestepped as if walking on eggshells. More attention was placed on the possibility that this could progress to leukemia rather than going ahead and acknowledging how serious his MDS itself was – its cancer but they don’t call it that and it is every much as fatal. We were talked out of 2nd opinions when in fact if we had proceeded earlier on it would have been more likely that the bone marrow transplant could have been pursued and successfully achieved earlier in the process. My biggest recommendation is to really push on getting answers to your husbands specific diagnosis, prognosis and referral for second opinion by going to an MDS center of excellence. And, you don’t need a referral to do so you can look up the centers on line and reach out directly. I am finding I was very strong throughout the process, but now am having a lot of medical problems myself and have not decided yet if I really want to continue live without him. We had no children, my parents are both gone, and my supposed friends are very distant. So, the other advice is be sure to surround yourself with good support system – take friends up on any offers of help. Be sure to engage support early in the process – even if you don’t feel like you need it.

[Sherry Pratt]

Carole, I am so sorry to read this. Everything you said is true. Get a second and third opinion if you have to. In many cases, MDS, can be cured with a transplant. I know not everyone is a candidate, but you don’t know until you ask and get to a center that specializes in them. When I went for my second and third opinion I never told my first doctor til afterwards! U am God led me down that path because I am pretty certain I would not be here to tell you my story I had I not. MDS is a very serious disease and yes it can progress into AML. Pratt8075@aol.com

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