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Meet fellow Caregivers - Introduce yourself
Caregivers | Last Active: Nov 12, 2023 | Replies (707)Comment receiving replies
I am a 60 year old caregiver for my husband who is 65. July 2017 he was diagnosed with Multiple Myeloma. In January 2018 he had an autologous stem cell transplant. He achieved MRD but was on maintenance lenalidomide from April 2018 until September 2019. In September 2019 he developed C-Diff and pneumonia and ended up in the hospital for 5 days. They did a bone marrow biopsy in October 2019 to see if he could discontinue the lenalidomide. He was then diagnosed with Myelodysplastic Syndrome. Another blood cancer. The doctors are pretty certain he got MDS from the chemo he received before his stem cells transplant.
He started treatment for MDS January of 2020. We are going through treatment on a clinical trial at Mayo clinic and also our local hospital/clinic. The first 3 cycles of treatment everything was scheduled and we proceeded just fine. He has just started cycle 7 but with cycle 4 thru 7 we have had delays because of low neutrophils and WBC. How do people handle the delays? The not being able to plan anything because you don't know when your next cycle of treatment is? How do you handle the anxiety of not so good lab results? Who do you talk to? It is hard to talk to friends and relatives. My husband looks great and feel good. If you look at him you would never know he is going through cancer treatment. So it is hard for people to understand the anxiety and emotional rollercoaster I am on. I have always been a planner. The more information I can have the better. I don't find a lot of information for MDS. This adds to my anxiety. If I knew what to expect, what to watch for, etc., I think I would do better. As a caregiver are you offered a social worker or someone that you can talk too? We have never been offered any of those services so not sure if they are available.
Any tips or tricks that others use to lessen the anxiety and stress would be helpful. I can tell myself to just live in the moment. That works some of the time. But then I start to worry again. So looking for resources and emotional support.
Kris
Replies to "I am a 60 year old caregiver for my husband who is 65. July 2017 he..."
Hi @kjjjrader Nice to e-meet you here on Connect! I'm Scott and I was my wife's caregiver for her many years of fighting brain cancer. She, too, for many years of her illness, looked quite 'normal. Inside was a totally different story. It was weird how the vast majority of our friends (many of over 40 years) ghosted on her due to this -- looking normal while fighting cancer!
Caregiving can be a very isolating experience and it is what brought me to Connect. I was looking for a place I could visit with other caregivers and talk about the truths of caregiving -- not the (often) BS view we get on TV and in magazines. While my wife did not have MDS I am willing to share what I learned and experienced as long term caregiver.
Strength, Courage, and Peace
@kjjjrader As @becsbuddy mentioned, there are often social workers available at hospitals. A social worker's role typically entails directing you to resources within the community. They will also often offer short term support. In your case, I might suggest finding a therapist, specifically a therapist who has experience with grief and loss. If I can make assumptions, I assume that your life is drastically different and that your relationship with your husband has shifted to not only wife but caregiver.
Many therapists are online right now due to Covid-19. You may want to start by speaking with your insurance to find providers in your network. Local social workers may have therapist recommendations and other resources. Is therapy something you and/or your husband are open to?
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Hi @kjjjrader You sound just like me! I want some answers and nobody has any. You can certainly stay in this group and sound off all you want. 😁 Also, the doctors offices should have licensed clinical social workers who are very well versed in everything about cancer and you should be able to talk with them. Call the doctor’s office and tell them you need to talk! I’m going to see if I can find some others with MDS and get you some answers!