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Caregiver Corner
So we have so many topics here on the Beacon. Can we consider a designated space for caregivers? For me life is not always easy. Sometimes the questions I post could easily fall under the category of venting. Maybe we too need our own thread, or space.
Re: Caregiver Corner
Sure, Cindy, we're happy to consider doing this. Thanks for the suggestion.
It's not very difficult to create a new part of the forum specifically for caregiver support and caregiver-related questions. It would be visible from the forum home page.
A couple of questions for you and for other forum participants.
First, for you (Cindy), how would you describe the purpose of this part of the forum? Can you point to any discussions that already exist in the forum that you feel would be an example of the kind of discussions best suited to this new part of the forum?
Second, for everyone else, would it be helpful to have such a part of the forum like this?
It's not very difficult to create a new part of the forum specifically for caregiver support and caregiver-related questions. It would be visible from the forum home page.
A couple of questions for you and for other forum participants.
First, for you (Cindy), how would you describe the purpose of this part of the forum? Can you point to any discussions that already exist in the forum that you feel would be an example of the kind of discussions best suited to this new part of the forum?
Second, for everyone else, would it be helpful to have such a part of the forum like this?
Re: Caregiver Corner
With the wide variety of information available from The Myeloma Beacon and other sources, having a specific place for caregivers to refer to might indeed be very helpful. It could provide caregivers and families an opportunity to meet and communicate with others experiencing similar circumstances, and a dedicated platform to ask questions not necessarily topical to other forum areas.
Anything that can potentially help MGUS, SMM and multiple myeloma patients, their caregivers and families/loved ones seems worth exploring. As caregivers and families are affected by these diagnoses and treatments in many ways, an opportunity to provide additional support, resources and sharing of information and experiences might be yet another helpful attribute of The Myeloma Beacon.
Anything that can potentially help MGUS, SMM and multiple myeloma patients, their caregivers and families/loved ones seems worth exploring. As caregivers and families are affected by these diagnoses and treatments in many ways, an opportunity to provide additional support, resources and sharing of information and experiences might be yet another helpful attribute of The Myeloma Beacon.
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Anonymous
Re: Caregiver Corner
I like this idea as well but I see that there has not been much response.
While right now I am in a good spot, there have been times that I have felt very lost and alone in this whole multiple myeloma trip my husband and I are on. We both work full time, and there have been times that this was very hard on my husband. He has a very high-stress job. I did look into trying to get a second job ,but my own medical issues make this difficult.
We are now getting ready to start a new year of deductibles and out of pocket bills without the benefit of our savings. We already went through that.
We discovered that a lot of those we called friends faded away when there was a need for them. Fortunately, we have a couple of wonderful neighbors who filled in. Our children, even though holding down full time jobs and trying to raise very young children, also did all they could to help.
My husband has gone through failed radiation, surgery and is now on Velcade, Revlimid and dexamethasone. He has approximately another four months of this. The oncologist will then reevaluate things to see where we go from there.
I know no one can help with solving issues, but sometimes it is nice to have a place to vent. I try to be positive for my husband, but there have been days when all I wanted to do was cry. He has a bad habit of saying “When I am gone, you need to be able to….” I keep telling him he is not going anywhere without a fight and he is stuck with me, but it does get frustrating.
While right now I am in a good spot, there have been times that I have felt very lost and alone in this whole multiple myeloma trip my husband and I are on. We both work full time, and there have been times that this was very hard on my husband. He has a very high-stress job. I did look into trying to get a second job ,but my own medical issues make this difficult.
We are now getting ready to start a new year of deductibles and out of pocket bills without the benefit of our savings. We already went through that.
We discovered that a lot of those we called friends faded away when there was a need for them. Fortunately, we have a couple of wonderful neighbors who filled in. Our children, even though holding down full time jobs and trying to raise very young children, also did all they could to help.
My husband has gone through failed radiation, surgery and is now on Velcade, Revlimid and dexamethasone. He has approximately another four months of this. The oncologist will then reevaluate things to see where we go from there.
I know no one can help with solving issues, but sometimes it is nice to have a place to vent. I try to be positive for my husband, but there have been days when all I wanted to do was cry. He has a bad habit of saying “When I am gone, you need to be able to….” I keep telling him he is not going anywhere without a fight and he is stuck with me, but it does get frustrating.
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Jmiller - Name: Harleygirl
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 57
Re: Caregiver Corner
I agree that a caregiver forum would be helpful. I'm unique as I'm a single 49 year old who never married due to my military career. I retired and came home to take care of my 80 year old mother and now she's my caregiver.
The following areas may assist in the decision for such a forum:
1. The medical speak. I try hard to pay attention to all aspects of my treatments and to be a good advocate for my disease but due to system overload, I can't catch it all. A caregiver is the last line to ensure that all questions are being asked/answered. My mother has greatly assisted me on this but does not follow as closely. Perhaps a Caregiver 101 guide could be developed through this forum to aid new members.
2. The emotional ups and downs of a multiple myeloma patient. The forum could be a place that can highlight others caregiver experiences. I know I'm on a constant roller coaster and stress my mother immensely. If she could just simply receive a monthly email sent by others in the forum, perhaps she'll understand she's not alone.
3. The financial burden and its toll on the caregiver. Is there a collected source of information other than the standard programs folks have used. I'm talking out of the box ideas such as private groups who could hold weekly raffles to aid an individual. Shared transportation with other chronic disease patients of the same facility and so forth.
Finally, Jmiller, you are not alone, and as a multiple myeloma patient, I thank you for supporting your husband. Stay positive until he can achieve a deep response and you'll see that you'll get comfortable in your new normal.
Hope this helps.
Kully
The following areas may assist in the decision for such a forum:
1. The medical speak. I try hard to pay attention to all aspects of my treatments and to be a good advocate for my disease but due to system overload, I can't catch it all. A caregiver is the last line to ensure that all questions are being asked/answered. My mother has greatly assisted me on this but does not follow as closely. Perhaps a Caregiver 101 guide could be developed through this forum to aid new members.
2. The emotional ups and downs of a multiple myeloma patient. The forum could be a place that can highlight others caregiver experiences. I know I'm on a constant roller coaster and stress my mother immensely. If she could just simply receive a monthly email sent by others in the forum, perhaps she'll understand she's not alone.
3. The financial burden and its toll on the caregiver. Is there a collected source of information other than the standard programs folks have used. I'm talking out of the box ideas such as private groups who could hold weekly raffles to aid an individual. Shared transportation with other chronic disease patients of the same facility and so forth.
Finally, Jmiller, you are not alone, and as a multiple myeloma patient, I thank you for supporting your husband. Stay positive until he can achieve a deep response and you'll see that you'll get comfortable in your new normal.
Hope this helps.
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Caregiver Corner
I originally had asked for this and apologize for not responding. I didn't suggest this to exclude anyone. But sometimes being a caregiver is as unique as myeloma itself. Sometimes I think it would be good if we could talk about our experiences and our frustrations. While this is a very welcoming group, I'm not sure all who are dealing with myeloma want to hear that we are frustrated, that we struggle at times. This could also be a good place to talk about ways we take care of ourselves, as well as our family members with myeloma.
Personally, I spend much of my energy on caregiving in my personal life, as well as my work life. And it gets exhausting sometimes. But when I come here and see other people struggling, I can't help but want to help. And, honestly, we have many members here who are very knowledgeable about their disease, and can answer inquiries about those issues. Over the past three years, I've become pretty good at navigating the medical community, about being an aggressive patient advocate, and finding ways to get help when it seems like you might be out of options. This would be a good place for all of those things.
When it was decided that my husband was in remission, but would be unable to proceed to transplant, I decided it was time to try and rejoin life a little bit. It's not an easy thing to switch gears like that. But its something we could all benefit from learning. And now that I have corrected my logging in problem, I would like to actively participate in a forum area like this.
Thanks, Cindy.
Personally, I spend much of my energy on caregiving in my personal life, as well as my work life. And it gets exhausting sometimes. But when I come here and see other people struggling, I can't help but want to help. And, honestly, we have many members here who are very knowledgeable about their disease, and can answer inquiries about those issues. Over the past three years, I've become pretty good at navigating the medical community, about being an aggressive patient advocate, and finding ways to get help when it seems like you might be out of options. This would be a good place for all of those things.
When it was decided that my husband was in remission, but would be unable to proceed to transplant, I decided it was time to try and rejoin life a little bit. It's not an easy thing to switch gears like that. But its something we could all benefit from learning. And now that I have corrected my logging in problem, I would like to actively participate in a forum area like this.
Thanks, Cindy.
Re: Caregiver Corner
Kullybunny1, thank you for the response. We are getting along and I think once he is done with this round of chemotherapy and we get into the new routine of lab work and x-rays, we will adjust better.
This year was a whirlwind of hurry up and wait. We see his oncologist Thursday before he gets his Velcade. I hope he can give us a better idea of what needs to be done next year. I think you who are facing this disease personally can give us caregivers a good idea of what you feel would be of help to you. Sometimes I need to remind myself to ask “What can I do to help?’ I tend to want to take over and do it all. Maybe that is one reason I get so frustrated.
Cindylouise, I am glad to hear your husband is in remission. I do hope this thread can continue. Recently a dear friend and I were able to spend a little time together. It was very cathartic. We all become frustrated at times with the system, the disease, even our loved ones. It helps to know we are not alone and that others have faced the same issues and road blocks that we face. Thank you so much for bringing forth this idea.
Thank you again,
Janis
This year was a whirlwind of hurry up and wait. We see his oncologist Thursday before he gets his Velcade. I hope he can give us a better idea of what needs to be done next year. I think you who are facing this disease personally can give us caregivers a good idea of what you feel would be of help to you. Sometimes I need to remind myself to ask “What can I do to help?’ I tend to want to take over and do it all. Maybe that is one reason I get so frustrated.
Cindylouise, I am glad to hear your husband is in remission. I do hope this thread can continue. Recently a dear friend and I were able to spend a little time together. It was very cathartic. We all become frustrated at times with the system, the disease, even our loved ones. It helps to know we are not alone and that others have faced the same issues and road blocks that we face. Thank you so much for bringing forth this idea.
Thank you again,
Janis
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Jmiller - Name: Harleygirl
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 57
Re: Caregiver Corner
Thanks, everyone, for your feedback on this idea. We will get a dedicated caregiver area of the forum up and running soon. As we just mentioned in a separate posting, there's a problem related to the processing of new (and edited) forum postings that we're trying to solve. Once it's solved, we'll set up the new caregiver area of the forum.
Thanks again for all the feedback and interest in a place for caregiver-related discussions. We hope it will prove useful to many members of the community.
Thanks again for all the feedback and interest in a place for caregiver-related discussions. We hope it will prove useful to many members of the community.
Re: Caregiver Corner
I think that having a Caregiver forum is a really good idea. I'm friends with a few of the partners of people with myeloma in the support group that I am involved with. Each of the caregivers has expressed frustration on different levels about a variety of issues at times. I think that it helps for me to be able to answer some of their questions/comments from a patient perspective who isn't the person they are caring for.
The support group that I attend breaks up into a patient group and a caregiver group 3 times a year so that each group is able to speak freely about issues that concern them. Our caregiver group is well attended and is facilitated by a certified oncology social worker. Living with myeloma as a patient, or as a caregiver, is difficult on so many levels. I often feel that it is harder for the caregiver because that person is outside of the body with myeloma. Those of us inside that body can usually tell how we are doing physically and emotionally and when we are beginning to have problems. But, the person outside of that body has to rely on us telling him/her truthfully what''s going on. How many of us really do that?
So, when you get the bugs figured out in this new forum, I hope that many will refer to it and gain from it as I have from the other forums.
Nancy in Phila
The support group that I attend breaks up into a patient group and a caregiver group 3 times a year so that each group is able to speak freely about issues that concern them. Our caregiver group is well attended and is facilitated by a certified oncology social worker. Living with myeloma as a patient, or as a caregiver, is difficult on so many levels. I often feel that it is harder for the caregiver because that person is outside of the body with myeloma. Those of us inside that body can usually tell how we are doing physically and emotionally and when we are beginning to have problems. But, the person outside of that body has to rely on us telling him/her truthfully what''s going on. How many of us really do that?
So, when you get the bugs figured out in this new forum, I hope that many will refer to it and gain from it as I have from the other forums.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Caregiver Corner
This is for Beacon staff. Are you still looking into setting up a care giver corner? Tried looking for it but did not find it.
Thank you,
Janis
Thank you,
Janis
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Jmiller - Name: Harleygirl
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 57
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