First I would like to say that my thoughts and prayers are with all of you that have this nasty disease. I had never heard of it until a year ago when my sister was diagnosed at the age of 59.
She moved on to Stage I 2 weeks ago and is debating a clinical trial at MD Anderson but either way she will be starting her 'chemo cocktail' within the next few weeks followed by the Stem Cell Transplant in September. If anyone can give me advice on what to do or how best to help her I would appreciate it. We all (as I'm sure you've felt at one time or another) feel totally 'gobsmacked' and are walking around in a daze.
If you could let me know how the people around you have helped or what I should expect to happen I would appreciate it. Right now I feel totally helpless.
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Re: What can I do as a care giver?
My husband was diagnosed in February. He is in Stage 3. He is not eating much, has lost 15 lbs. and is very tired. He has pain in his legs and feet and is walking with a cane for security. He is 67 and was working 40 hours a week until February. Things have changed very quickly for us. I also need to know what I can do and what to expect.
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blueridge - Name: blueridge
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: February 2012
- Age at diagnosis: 67
Re: What can I do as a care giver?
Hi Happy Camper and Blueridge, I am really sorry to hear that your husband, Blue Ridge, and your sister, Happy C., have myeloma, which is a frightening disease really. It is overwhelming to get a diagnosis of it, but once you start the chemotherapy you hopefully will find that things will turn around for you. Have you tried aqua fit type exercises in a swimming pool if your legs are painful? I have always felt that doing as much exercise as possible, even when injured or with neuropathy, is healthy, and good for one's mind set too! (think endorphins!) There are lots and lots of postings on this website by patients, doctors, researchers and caregivers. To find a topic, just type it into the 'search' box on the top right hand corner of the page. Hope all goes well with you...as a caregiver, just being there and being helpful in all sorts of ways, means the world to the patient, or at least that is my experience. I have had wonderful family and friend support which helped me out immensely. Take good care of yourselves, and remember that caregivers need rest too!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: What can I do as a care giver?
Happy Camper and BlueRidge,
I agree with Nancy - the first few months after diagnosis are some of the most frightening. Myeloma is a tough subject to get your arms around. But once treatment starts, most patients start to feel better, and many can get back to the lives they were leading before their diagnosis. I think one of the hardest things for me as a caregiver has been knowing when to lend a hand, and knowing when to step back. As much as I want to be perfect - go with EJ to every doctor's appointment, sit with him during every infusion - I soon realized that it was impossible. Now I go to the big ones - when he gets results of tests, when treatment plans might change, when decisions need to be made, etc. Generally I'm there when its helpful to have another person listen to what is being said. I think its important for him to have ownership of his disease and the treament. Besides, he loves his infusion nurses and can't flirt with them if I'm always hanging around!
BlueRidge - you talk about your husband having pain in his legs and his feet. Could he be suffering from peripheral neuropathy from his medications? If you search this sight you'll find lots of information on what others have done to relieve their peripheral neuropathy. If you decide to add vitamins to your diet just make sure you review them with your onc. first.
Lyn
I agree with Nancy - the first few months after diagnosis are some of the most frightening. Myeloma is a tough subject to get your arms around. But once treatment starts, most patients start to feel better, and many can get back to the lives they were leading before their diagnosis. I think one of the hardest things for me as a caregiver has been knowing when to lend a hand, and knowing when to step back. As much as I want to be perfect - go with EJ to every doctor's appointment, sit with him during every infusion - I soon realized that it was impossible. Now I go to the big ones - when he gets results of tests, when treatment plans might change, when decisions need to be made, etc. Generally I'm there when its helpful to have another person listen to what is being said. I think its important for him to have ownership of his disease and the treament. Besides, he loves his infusion nurses and can't flirt with them if I'm always hanging around!
BlueRidge - you talk about your husband having pain in his legs and his feet. Could he be suffering from peripheral neuropathy from his medications? If you search this sight you'll find lots of information on what others have done to relieve their peripheral neuropathy. If you decide to add vitamins to your diet just make sure you review them with your onc. first.
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: What can I do as a care giver?
My husband was diagnosed with Myeloma in 2009 and chose to go to UAMS in Little Rock for treatment. There, the role of caregiver is both important and and crucial. Stem cell transplants (in the majority of cases) are outpatient with caregivers being there every step of the way. We go to testing, infusion, doctor appointments--everything! The support system is phenomenal. Since treatments are daily for weeks at a time during induction and transplants, many close friendships are formed...the medical staff and other caregivers/patients become family. Everyone helps everyone. We are all there for the same disease, so we are all on the same page of the book, so to speak. The wealth of information from each and every person keeps you going and sane! My husband was deathly ill when we arrived for the first time. The natural support system from the many caregivers and staff at The UAMS Myeloma Clinic moved us forward. We arrived fearful and left brave and full of hope. It is now two transplants later and my husband is on maintenance. The experience has been eye opening and valuable to his ongoing care. I know without excellent caregivers he would not have progressed as quickly as he did. The caregiving role from me was pivotal for him, and the caregiver role from others gave me the help I needed. That support system is so important. It is vital. It provides strength, and it provides hope. It helps us see the light at the end of the tunnel.
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Rhonda
Re: What can I do as a care giver?
I concur with the others that have mentioned the first few months will be most difficult as you adjust to the diagnosis and the changes it causes in your life. As care givers, how you can best help will depend on the patient, how they respond to treatment, your personalities. I'll provide some examples of how my wife and I have responded that may help.
Find ways to share the burdens. Neither the patient nor the caregiver should try and take it all on. In my case, I deal with all the appointments, dealing with doctors, prescriptions, etc. My wife takes care of all the insurance and various bills.
As caregiver, make sure you set aside time for yourself. Take breaks from being the caregiver so you don't get burned out. If there are relatives, friends, church members, etc. that volunteer to help, or you feel comfortable asking for help, do so. Keep yourself healthy and take care of yourself - eat well, exercise, etc. As a patient, recognize that your caregiver needs regular breaks and needs to keep themselves healthy. Encourage, and even insist that they do. My wife gets out for walks, stretches, or bikes most every day of the week.
Provide the patient is up to it, try and get out at least once a week to do something enjoyable. Get away from the cancer and get your mind off it if you can. Share something together that does not center around being sick.
As caregiver, recognize that the patient is going to have ups and downs. Sometimes we're fairly easy to get along with and other times we're going to be feeling sorry for ourselves, or the drugs we're on may cause some emotional shifts, or we just may feel cruddy. Don't take it personally, more than likely it's us, not you, that's the issue but you may get the brunt of it because you're the one that's available to grumble to. Please just try to be patient with us. Normally I'm really laid back, but on dex days I've noticed I can be a bit more irritable with my wife. Fortunately, we've talked about it and we're getting better at recognizing it and stepping back and regrouping when it happens.
Another area where my wife has been great is my eating inconsistencies. Sometimes I'm not hungry due to being queasy, sometimes certain foods just don't appeal to me, and sometimes I just don't feel like eating. Other times, I may be very hungry in the middle of the day, fix something to eat, and then not want much for dinner. As an example, this past week she made a great meal, I had a little bit, thought it tasted great, but couldn't eat any more then, nor any of the leftovers – it just didn't appeal to me even though I knew it was good.
As caregiver and patient, we recognize that my wife does not always need to accompany me to appointments, infusions, etc. She'll come to the important meetings, but generally most of mine entail sitting around, getting some blood drawn for tests, sitting around some more, sometimes seeing a doctor, sitting around some more, going in for infusions, and sitting around some more. For her, this means basically just sitting around for a long time. If I can take care of getting to, going through, and getting home from treatment, I do. This then also provides a great time for my wife to have some time to herself.
Finally, and perhaps most importantly, just love and appreciate the patient. Don't treat us like we're invalids, or on our death bed. My wife and I give each other a lot of hugs. We make sure we have some close time each week. She recognizes when I'm having bad days and helps out in ways that matter, but she still lets me guide the amount of care I need and doesn't go overboard.
Peace, and good luck.
Find ways to share the burdens. Neither the patient nor the caregiver should try and take it all on. In my case, I deal with all the appointments, dealing with doctors, prescriptions, etc. My wife takes care of all the insurance and various bills.
As caregiver, make sure you set aside time for yourself. Take breaks from being the caregiver so you don't get burned out. If there are relatives, friends, church members, etc. that volunteer to help, or you feel comfortable asking for help, do so. Keep yourself healthy and take care of yourself - eat well, exercise, etc. As a patient, recognize that your caregiver needs regular breaks and needs to keep themselves healthy. Encourage, and even insist that they do. My wife gets out for walks, stretches, or bikes most every day of the week.
Provide the patient is up to it, try and get out at least once a week to do something enjoyable. Get away from the cancer and get your mind off it if you can. Share something together that does not center around being sick.
As caregiver, recognize that the patient is going to have ups and downs. Sometimes we're fairly easy to get along with and other times we're going to be feeling sorry for ourselves, or the drugs we're on may cause some emotional shifts, or we just may feel cruddy. Don't take it personally, more than likely it's us, not you, that's the issue but you may get the brunt of it because you're the one that's available to grumble to. Please just try to be patient with us. Normally I'm really laid back, but on dex days I've noticed I can be a bit more irritable with my wife. Fortunately, we've talked about it and we're getting better at recognizing it and stepping back and regrouping when it happens.
Another area where my wife has been great is my eating inconsistencies. Sometimes I'm not hungry due to being queasy, sometimes certain foods just don't appeal to me, and sometimes I just don't feel like eating. Other times, I may be very hungry in the middle of the day, fix something to eat, and then not want much for dinner. As an example, this past week she made a great meal, I had a little bit, thought it tasted great, but couldn't eat any more then, nor any of the leftovers – it just didn't appeal to me even though I knew it was good.
As caregiver and patient, we recognize that my wife does not always need to accompany me to appointments, infusions, etc. She'll come to the important meetings, but generally most of mine entail sitting around, getting some blood drawn for tests, sitting around some more, sometimes seeing a doctor, sitting around some more, going in for infusions, and sitting around some more. For her, this means basically just sitting around for a long time. If I can take care of getting to, going through, and getting home from treatment, I do. This then also provides a great time for my wife to have some time to herself.
Finally, and perhaps most importantly, just love and appreciate the patient. Don't treat us like we're invalids, or on our death bed. My wife and I give each other a lot of hugs. We make sure we have some close time each week. She recognizes when I'm having bad days and helps out in ways that matter, but she still lets me guide the amount of care I need and doesn't go overboard.
Peace, and good luck.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
6 posts
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