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Moderator

Meet fellow Caregivers - Introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Aug 27, 2016

Welcome to the Caregivers group on Mayo Clinic Connect.
Caring for someone can be rewarding, but it is also very demanding and can be isolating. Let's use this space to connect with other caregivers, share experiences, talk frankly about the tough stuff without judgement and to provide a virtual shoulder to lean on.

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of tea, or beverage of you choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Caregivers Support Group.

Mentor
Scott, Volunteer Mentor | @IndianaScott | Sep 11, 2020
In reply to @djangomay2 "Thanks very much for your suggestions. I don't think my wife is really capable anymore of..." + (show)
@djangomay2

Thanks very much for your suggestions. I don't think my wife is really capable anymore of activities like folding laundry. Sometimes her aides put on French music and that seems to perk her up. My real desire is to expose her to more stimulation, rather than just have her sit in a wheelchair all day. But I don't know what kind of stimulation will work best for her. Pet therapy is a good idea. We even tried a mechanical cat that purred etc, but she didn't seem to relate to that much at all. Possibly a guinea pig, which was a favorite animal of hers while we were living in Australia. My wife Christine was a very active person, who was a docent at the Melbourne, Australia Zoo, drove around the entire periphery of Australia by herself, was held by the Vietcong for a few days in Vietnam, etc. So it's sad to see her doze most of the time. It could be that she's not really capable of doing much anymore, but I want to experiment with more stimulation than she's getting at present.

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Hi @djangomay2 Nice to have you here in the Mayo Connect caregiving discussion group. I'm Scott and I was my wife's caregiver during her 14+ year war with brain cancer. I also was a secondary caregiver for my mother-in-law who had dementia and lived in St. Paul.
I agree it is terribly difficult to find resources, get a quality check on them, and utilize them -- often blindly. I, too, found little of help since my wife was too young for Medicare and we didn't qualify for Medicaid. It was far too much trial and error and monitoring. Often with truly crummy results.

While every patient and disease path is unique, I know in my wife's case I had to 'go with her flow' on what she was interested in doing or capable of doing. We'd had pets our entire married lives, but they quickly became too intrusive for her as did TV, radio, music, visitors, etc. I ended up with loads of books, kits, etc. that never hit their mark and remained unopened.

Let me know if I can help with any specific questions you might have.

Strength, courage, and peace

REPLY
kjjjrader | @kjjjrader | Sep 30, 2020

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

REPLY
3 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Sep 30, 2020
In reply to @kjjjrader "I am a 60 year old caregiver for my husband who is 65. July 2017 he..." + (show)
@kjjjrader

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

Jump to this post

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!

REPLY
Mentor
Scott, Volunteer Mentor | @IndianaScott | Sep 30, 2020
In reply to @kjjjrader "I am a 60 year old caregiver for my husband who is 65. July 2017 he..." + (show)
@kjjjrader

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

Jump to this post

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

REPLY
Erika | @erikas | Oct 1, 2020
In reply to @kjjjrader "I am a 60 year old caregiver for my husband who is 65. July 2017 he..." + (show)
@kjjjrader

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

Jump to this post

@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?

REPLY
fordar | @fordar | Jun 24, 2021

Hi. My name is Darin and my son is is on the liver transplant list. Just patiently waiting to get the call and have him feel better again

REPLY
1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Jun 24, 2021
In reply to @fordar "Hi. My name is Darin and my son is is on the liver transplant list. Just..." + (show)
@fordar

Hi. My name is Darin and my son is is on the liver transplant list. Just patiently waiting to get the call and have him feel better again

Jump to this post

Hello @fordar Nice to e-meet you here Darin. I am sorry to read of your son's situation, but glad you found Mayo Connect! I am Scott and I was my wife's caregiver and know the times of waiting often were among the tougher ones.

Good to hear your son is on the list and there is a Transplant group here on Connect too. It is at https://connect.mayoclinic.org/group/transplants/

How long has your son been on the list?
Strength, courage, and peace

REPLY
1 reply
fordar | @fordar | Jun 24, 2021
In reply to @IndianaScott "Hello @fordar Nice to e-meet you here Darin. I am sorry to read of your son's..." + (show)
@IndianaScott

Hello @fordar Nice to e-meet you here Darin. I am sorry to read of your son's situation, but glad you found Mayo Connect! I am Scott and I was my wife's caregiver and know the times of waiting often were among the tougher ones.

Good to hear your son is on the list and there is a Transplant group here on Connect too. It is at https://connect.mayoclinic.org/group/transplants/

How long has your son been on the list?
Strength, courage, and peace

Jump to this post

A few weeks here at mayo and he was on the list at penn state hershey since january. This psc came hard and fast after 9 years of pretty much little liver issues

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1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Jun 25, 2021
In reply to @fordar "A few weeks here at mayo and he was on the list at penn state hershey..." + (show)
@fordar

A few weeks here at mayo and he was on the list at penn state hershey since january. This psc came hard and fast after 9 years of pretty much little liver issues

Jump to this post

Good morning @fordar It sounds good that he has been on the list for awhile now.

Does your son live close by?
Strength, Courage, & Peace

REPLY
1 reply
fordar | @fordar | Jun 25, 2021
In reply to @IndianaScott "Good morning @fordar It sounds good that he has been on the list for awhile now...." + (show)
@IndianaScott

Good morning @fordar It sounds good that he has been on the list for awhile now.

Does your son live close by?
Strength, Courage, & Peace

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Yes, he and I relocated for at least a year 20 minutes away from there. Have to do what's best for him

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