Hi All,
I thought I'd ask what others do for their caregivers to help with burnout.
My wife and I (and everyone else close to us) have been dealing with the various forms of this disease for 18+ years now. Personally, I think this is great in the fact that I'm still around, although it has definitely taken its toll!
Fast forward to these last two months and we find that the myeloma has started in on attacking my spine. It has left me with (radiated) tumors on C6, T2, T5, T7, l2, L3, L4. As I indicated, I have had radiation on these, however there are still issues. I had vertebroplasty on L3 & L4. The worst is my C6, where there is no more bone left, just a solid tissue mass. This causes major pain down my arms.
But this post isn't about me. My wife is having some serious bouts of anxiety and her doctor doesn't seem to grasp this. I want to be able to reassure her, but also need to tell the truth, which in turn feeds the anxiety! Her birthday is coming up, so I am giving her a spa package hopefully to relax her. But it goes beyond just relaxing.
Does anyone have some ideas of other things we can try?
Thanks, Gary
Forums
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GaryH - Name: GaryH
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov./97
- Age at diagnosis: 44
Re: How can we care for the caregivers?
Hi Gary,
Sorry to hear about your spine and your pain. 18 years! Wow - that's inspirational.
I hope that my husband and I are as lucky. I am caregiver, going on 4 years. I also have anxiety (something that I had before my husband was diagnosed, but became much more pronounced after his diagnosis). I recently found a helpful tool called Tension and Trauma Releasing Exercises (TRE). You can look it up at trauma prevention.com (search under "Find a Provider.") Essentially, TRE is a series of 7 stretching exercises that helps to turn on a therapeutic tremoring process within our own bodies that eases tension and re-patterns stress in the body. It's very easy to learn and anyone can do it, even with physical limitations. It's kind of like resetting your nervous system, helping it to balance out from chronic states of fight/flight. For me, doing TRE has helped me to deal with everyday stressors much better. It is also helping to ease my anxiousness.
Happy Birthday to your wife! I'm sure she will enjoy her spa package.
Best,
Jeannie
Sorry to hear about your spine and your pain. 18 years! Wow - that's inspirational.
I hope that my husband and I are as lucky. I am caregiver, going on 4 years. I also have anxiety (something that I had before my husband was diagnosed, but became much more pronounced after his diagnosis). I recently found a helpful tool called Tension and Trauma Releasing Exercises (TRE). You can look it up at trauma prevention.com (search under "Find a Provider.") Essentially, TRE is a series of 7 stretching exercises that helps to turn on a therapeutic tremoring process within our own bodies that eases tension and re-patterns stress in the body. It's very easy to learn and anyone can do it, even with physical limitations. It's kind of like resetting your nervous system, helping it to balance out from chronic states of fight/flight. For me, doing TRE has helped me to deal with everyday stressors much better. It is also helping to ease my anxiousness.
Happy Birthday to your wife! I'm sure she will enjoy her spa package.
Best,
Jeannie
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Jean Ruth Howard - Name: Jeannie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 47
Re: How can we care for the caregivers?
There are so many things that can help with the stress and anxiety of being a caregiver. Your thoughtfulness in giving your wife a spa package for her birthday is a start. You and your wife might consider talking with the social worker and/or psychologist at your cancer center about the issues that your wife is having around the current state of your disease. Taking a course in Mindful Meditation and practicing it on a daily basis is very helpful. Various exercise classes such as Yoga, Tai Chi, Qi Qong, etc, also are very helpful since they all have a meditation type aspect to them. Getting counseling from your pastor, priest, rabbi, imam, etc also is very helpful.
Encouraging your wife to go out with friends on a regular basis can at least remove her from the immediate environment of stress and anxiety for a period of time. You also might purchase her a series of massages or Reiki sessions so that she goes at least every other week or every week. This will help to relax her and relieve her stress on a regular basis. Last, but not least, talk with her primary doctor if the oncologist isn't responsive to her needs, about maybe some anti-depressants.
Lots of possibilities, but the major fact that you are aware of her distress and want to do something about it is major. Keep supporting her as much as you can. Don't keep things from her when you aren't feeling the best because this can cause her more stress by not knowing. Make sure that your wife knows how much you love her, value her assistance in living with myeloma, and her presence on a regular basis. Caregiving is one of the most difficult jobs that there is.
All the best to both you and your wife,
Nancy in Phila
Encouraging your wife to go out with friends on a regular basis can at least remove her from the immediate environment of stress and anxiety for a period of time. You also might purchase her a series of massages or Reiki sessions so that she goes at least every other week or every week. This will help to relax her and relieve her stress on a regular basis. Last, but not least, talk with her primary doctor if the oncologist isn't responsive to her needs, about maybe some anti-depressants.
Lots of possibilities, but the major fact that you are aware of her distress and want to do something about it is major. Keep supporting her as much as you can. Don't keep things from her when you aren't feeling the best because this can cause her more stress by not knowing. Make sure that your wife knows how much you love her, value her assistance in living with myeloma, and her presence on a regular basis. Caregiving is one of the most difficult jobs that there is.
All the best to both you and your wife,
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: How can we care for the caregivers?
I'm a caregiver. The vitamin B's are very important support in addition to whatever other supplement support you do. When we have anxiety and stress the B's are eaten up. When replaced it can help calm. B Complex, Sam-e, and then B-1 helps turn off recurring thoughts, which can plague us particularly at bedtime. Insomnia will exasperate it all further. There are also some amazing essential oil blends available now that can be used anytime and often in addition to the supplements.
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habubrat - Name: Lori
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2008
- Age at diagnosis: 48
Re: How can we care for the caregivers?
Thanks for the ideas! A lot of good ones. My wife already does yoga and meditation, goes for walks, etc. So I guess we're doing things right.
I think the next step is to possibly see a counselor, but there isn't onethat specializes like that around here. I'll do some more investigating.
Thanks again, Gary
I think the next step is to possibly see a counselor, but there isn't onethat specializes like that around here. I'll do some more investigating.
Thanks again, Gary
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GaryH - Name: GaryH
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov./97
- Age at diagnosis: 44
Re: How can we care for the caregivers?
Hi Gary,
I needed to think about this a bit. As a caregiver, I am most stressed when EJ doesn't take care of his health ... I should restate that -- when he does things that I think are bad for his health. Not eating right, not getting enough sleep, overdoing it at the gym, not taking the time to really understand his treatment, etc. I've had to let go of some of this, and accept that they are "Quality of Life" issues for him. He thrives on working hard and long, and if he's working late he's most likely going to grab something to eat that's not healthy. Some of it I have to rely on doctors to tell him - at one of his last checkups, the doctor told him he should give up volleyball because the jumping was hard on his back. I'd been worried about this for a while.
Asking your wife her opinion, or giving her an opportunity to voice her thoughts/concerns about your treatment and/or lifestyle choices, may help her anxiety. As caregivers, we accept that the patient has to make choices for themselves, but when they make choices that we don't think are in their best interest – no matter how seemingly small – it can be very stressful.
Hope that helps.
Lyn
I needed to think about this a bit. As a caregiver, I am most stressed when EJ doesn't take care of his health ... I should restate that -- when he does things that I think are bad for his health. Not eating right, not getting enough sleep, overdoing it at the gym, not taking the time to really understand his treatment, etc. I've had to let go of some of this, and accept that they are "Quality of Life" issues for him. He thrives on working hard and long, and if he's working late he's most likely going to grab something to eat that's not healthy. Some of it I have to rely on doctors to tell him - at one of his last checkups, the doctor told him he should give up volleyball because the jumping was hard on his back. I'd been worried about this for a while.
Asking your wife her opinion, or giving her an opportunity to voice her thoughts/concerns about your treatment and/or lifestyle choices, may help her anxiety. As caregivers, we accept that the patient has to make choices for themselves, but when they make choices that we don't think are in their best interest – no matter how seemingly small – it can be very stressful.
Hope that helps.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: How can we care for the caregivers?
Lyn, you have hit the mark. I get most stressed when my hubby does things the doc said not to do. He only does minor 'no-nos', but it stresses me. Being able to talk it out and be heard is important. I have learned to let go, but still, I need to vent.
That said, Gary, there is no place I'd rather be than my caregiver role. It's what we do for those we love.
That said, Gary, there is no place I'd rather be than my caregiver role. It's what we do for those we love.
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wekebu - Name: Wendy
- Who do you know with myeloma?: Hubby
- When were you/they diagnosed?: Jan 2016
- Age at diagnosis: 55
Re: How can we care for the caregivers?
I too am a caregiver, but my husband and I have the ability to truly know how we feel as he was my caregiver when I went through 10 months of surgery and chemo for breast cancer 11 years ago.
That said, each role is different. When we first found out he had myeloma, I said even knowing what cancer treatment is like I would do it all again to spare him. I also told him that, as much as I love him, I would only allow so much and then I would call bull s#^&, just as we have always done in our 27 years together, and we would both then smile and laugh as always. This man is my other half, and we are fighting myeloma together one day at a time. Good luck to all fighting and those who have their backs!
Caregivers, take time to do a few things for yourselves. Mine is a good glass of wine pilled up with pillows in bed and watching some good TV - just me and the dog! I tell my hubby "Honey, me and Rascal need a wine and TV night." He will say ok and give me a kiss and head upstairs to his "man cave" and find something to do.
That said, each role is different. When we first found out he had myeloma, I said even knowing what cancer treatment is like I would do it all again to spare him. I also told him that, as much as I love him, I would only allow so much and then I would call bull s#^&, just as we have always done in our 27 years together, and we would both then smile and laugh as always. This man is my other half, and we are fighting myeloma together one day at a time. Good luck to all fighting and those who have their backs!
Caregivers, take time to do a few things for yourselves. Mine is a good glass of wine pilled up with pillows in bed and watching some good TV - just me and the dog! I tell my hubby "Honey, me and Rascal need a wine and TV night." He will say ok and give me a kiss and head upstairs to his "man cave" and find something to do.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: How can we care for the caregivers?
I'm sure the help from caregivers is highly appreciated. I appreciated the help when I had my transplant!
But here's something to think about if you're a caregiver. Many people that have multiple myeloma do not have a daily caregiver (I'm one of those people) and get along just fine on their own. I'm referring to patients that are not on death's doorstep and are living a fairly normal day to day existence...as normal as it can get having this disease. So if you're a caregiver for someone like that, you might want to let that person do more for themselves, therefore lessening the burden on you, the caregiver. And try not to worry so much because what will be will be!...you can not change it by worrying. As far as a patient doing something the doctor said not to...your loved one/patient is an adult and can make their own decisions and live with those consequences.
I agree with dogmom that caregivers MUST take care of themselves too and sometimes just leave their "patient" alone to do their own thing as well.
But here's something to think about if you're a caregiver. Many people that have multiple myeloma do not have a daily caregiver (I'm one of those people) and get along just fine on their own. I'm referring to patients that are not on death's doorstep and are living a fairly normal day to day existence...as normal as it can get having this disease. So if you're a caregiver for someone like that, you might want to let that person do more for themselves, therefore lessening the burden on you, the caregiver. And try not to worry so much because what will be will be!...you can not change it by worrying. As far as a patient doing something the doctor said not to...your loved one/patient is an adult and can make their own decisions and live with those consequences.
I agree with dogmom that caregivers MUST take care of themselves too and sometimes just leave their "patient" alone to do their own thing as well.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: How can we care for the caregivers?
The most important thing my husband did for me was remain my husband and partner. He was in so much pain that he couldn't hold me - couldn't roll on to his side, and couldn't stand up without crutches.
So we started a 'hug' where I sat on the floor between his feet with my head on his thigh, and he'd put his hands on my back or stroke my hair. It let us connect physically when pretty much every other way was closed to us. We still do this sometimes although he's now back to normal.
He also HATES being served and the term 'caregiver' makes us both gag a little. So we became Minion and Evil Genius. It worked for us, and we could laugh about him needing water brought to him, or needing his hair washed or help dressing. I got pretty good at my Minion impersonation
He listened when I reminded him what the doctor said. I accepted being wrong when I wasn't, because it was better for him NOT to know how much he was forgetting. (chemo brain. It's a thing.)
I also went back to a regular AA meeting. I've been sober over 25 years, but AA has been a great support for me. I walked every day, and had cancer-experienced friends on speed dial.
What makes a given person feel supported is so individual. For us it meant not falling into a pattern of feeling like I was his mom, not his wife. It meant laughing, being smart asses, and not changing who we were because myeloma changed what we could do.
So we started a 'hug' where I sat on the floor between his feet with my head on his thigh, and he'd put his hands on my back or stroke my hair. It let us connect physically when pretty much every other way was closed to us. We still do this sometimes although he's now back to normal.
He also HATES being served and the term 'caregiver' makes us both gag a little. So we became Minion and Evil Genius. It worked for us, and we could laugh about him needing water brought to him, or needing his hair washed or help dressing. I got pretty good at my Minion impersonation
He listened when I reminded him what the doctor said. I accepted being wrong when I wasn't, because it was better for him NOT to know how much he was forgetting. (chemo brain. It's a thing.)
I also went back to a regular AA meeting. I've been sober over 25 years, but AA has been a great support for me. I walked every day, and had cancer-experienced friends on speed dial.
What makes a given person feel supported is so individual. For us it meant not falling into a pattern of feeling like I was his mom, not his wife. It meant laughing, being smart asses, and not changing who we were because myeloma changed what we could do.
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LisaE - Name: Lisa
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 67
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