Right now the main issue my husband is dealing with is he gets tired and short of breath very easy.
How do you as caregivers help your loved one with this?
How do those of you with multiple myeloma feel your caregiver can best help you?
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As caregiver, how to help loved ones with exhaustion?
Last edited by Jmiller on Sun Sep 06, 2015 9:06 am, edited 1 time in total.
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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: As caregiver, how to help loved ones with exhaustion?
Harleygirl,
I recently had this discussion with my caregiver, who happens to be my 81-year-old Mother. She's gotten me through all my treatments and has been my rock. I told her, "Mom, as my caregiver, if I fall, pick me up, and if I need immediate assistance, call 911". Other than that, I pride myself in doing simple chores, working in my yard and making repairs – albeit slow – to my house. I tend to push myself as I work to improve my strength, and have nearly passed out or fallen a few times. I'll only do this if she's at home or a quick phone call away. She checks on me periodically to make sure I don't over do it – especially on hot, humid days.
This is my thoughts on the caregiver role and I thank my Mother everyday! Oh, and she attends all my medical visits and consults and ensures that I cover all my concerns and fully understand the doctor's inputs.
Thanks for what you do to care for your husband.
Kully
I recently had this discussion with my caregiver, who happens to be my 81-year-old Mother. She's gotten me through all my treatments and has been my rock. I told her, "Mom, as my caregiver, if I fall, pick me up, and if I need immediate assistance, call 911". Other than that, I pride myself in doing simple chores, working in my yard and making repairs – albeit slow – to my house. I tend to push myself as I work to improve my strength, and have nearly passed out or fallen a few times. I'll only do this if she's at home or a quick phone call away. She checks on me periodically to make sure I don't over do it – especially on hot, humid days.
This is my thoughts on the caregiver role and I thank my Mother everyday! Oh, and she attends all my medical visits and consults and ensures that I cover all my concerns and fully understand the doctor's inputs.
Thanks for what you do to care for your husband.
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: As caregiver, how to help loved ones with exhaustion?
Hello Harleygirl,
I'm sorry to hear about the fatigue and exhaustion your husband is experiencing.
One bit of advice I would offer is to encourage your husband to get as much rest as his body is telling him he needs. I am sure he wants his life to be as normal as possible, and he feels he has to be strong and fight back at the fatigue he is feeling. But what he is feeling is really his body telling him it needs to rest and recover. Give it what it needs! Your husband will feel better, and the rest also will probably help his body strengthen more quickly.
Also, you may find some useful tips in previous discussions here in the forum about fatigue and exhaustion. This link will take you to a list of them.
I got that link from this useful posting here in the forum: "Useful links to existing forum discussions". The posting is always the first one in the list of discussions in the "Treatments & Side Effects" section of the forum. There are many different links in the posting that will take you to all previous discussions about specific myeloma treatments and specific side effects.
Best wishes,
Cheryl
I'm sorry to hear about the fatigue and exhaustion your husband is experiencing.
One bit of advice I would offer is to encourage your husband to get as much rest as his body is telling him he needs. I am sure he wants his life to be as normal as possible, and he feels he has to be strong and fight back at the fatigue he is feeling. But what he is feeling is really his body telling him it needs to rest and recover. Give it what it needs! Your husband will feel better, and the rest also will probably help his body strengthen more quickly.
Also, you may find some useful tips in previous discussions here in the forum about fatigue and exhaustion. This link will take you to a list of them.
I got that link from this useful posting here in the forum: "Useful links to existing forum discussions". The posting is always the first one in the list of discussions in the "Treatments & Side Effects" section of the forum. There are many different links in the posting that will take you to all previous discussions about specific myeloma treatments and specific side effects.
Best wishes,
Cheryl
Re: As caregiver, how to help loved ones with exhaustion?
Hello Harleygirl
As a multiple myeloma sufferer, I think that one way my caregiver can help me is to help me prepare for and be present at my doctors' appointments – just in case I forget something or miss something.
Another thing I would say is that one should encourage one's caregiver to take good care of himself or herself to reduce the stress of coping with this illness. I think that is one reason hospice programs provide respite services, so that caregivers can have a break from the pressures of coping.
I hope your husband feels better soon!
As a multiple myeloma sufferer, I think that one way my caregiver can help me is to help me prepare for and be present at my doctors' appointments – just in case I forget something or miss something.
Another thing I would say is that one should encourage one's caregiver to take good care of himself or herself to reduce the stress of coping with this illness. I think that is one reason hospice programs provide respite services, so that caregivers can have a break from the pressures of coping.
I hope your husband feels better soon!
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: As caregiver, how to help loved ones with exhaustion?
I would suggest helping to get a notebook binder with all your test results that you can take to doctors appointments. When you are dealing with multiple myeloma specialist, oncologist, and family doctor, you have all your test results there with you. My specialist is 3 hours away and even though they have a great relationship with my oncologist and papers are faxed between the offices, it helps to have everything at your fingertips. I have all the bone marrow biopsy results, MRI results, light chain test, stem cell transplant report, and family doctor yearly blood work. I have used it on several visits this year.
I wish good results for your spouse. Learning to stop and take a break is a hard lesson to learn. Caregivers are SPECIAL. My husband has been my rock through this.
I wish good results for your spouse. Learning to stop and take a break is a hard lesson to learn. Caregivers are SPECIAL. My husband has been my rock through this.
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Music box lady - Name: Margie
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 60
Re: As caregiver, how to help loved ones with exhaustion?
I've had IgA lambda myeloma since 2010, and have had 4 treatments – thalidomide, Velcade, and dex; Velcade, dex, and cyclophosphamide; Revlimid and dex; and now Pomalyst and dex – that have been very kind to me. Anaemia from the beginning was the most noteworthy sign of my multiple myeloma.
The signs are: fatigue and shortness of breath when the blood% (hæmaglobin) is around 4.5 mmol/l (normal is 8.3-10.5).
So have control with the hæmaglobin. Your local MD can test it fairly accurate with some blood from a finger. When it is less than 5.0, I normally have 2 bags of blood, which keep me running for 2-3 weeks.
Only other complaint from my side, Harleygirl, is that I had to sell my BMW motorcycle after advice from my oncologist; well, when over 72 years, it was the time, I guess!
I hope this will help your husband,
SørenDK
The signs are: fatigue and shortness of breath when the blood% (hæmaglobin) is around 4.5 mmol/l (normal is 8.3-10.5).
So have control with the hæmaglobin. Your local MD can test it fairly accurate with some blood from a finger. When it is less than 5.0, I normally have 2 bags of blood, which keep me running for 2-3 weeks.
Only other complaint from my side, Harleygirl, is that I had to sell my BMW motorcycle after advice from my oncologist; well, when over 72 years, it was the time, I guess!
I hope this will help your husband,
SørenDK
Re: As caregiver, how to help loved ones with exhaustion?
Hello, Soren:
I am a little confused by your post. Who has the exhaustion?? Is it yourself or the BMW motorcycle??
I am a little confused by your post. Who has the exhaustion?? Is it yourself or the BMW motorcycle??
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JPC - Name: JPC
Re: As caregiver, how to help loved ones with exhaustion?
Hello Harley Girl,
My husband also experiences a lot of fatigue and often will have shortness of breath during exertion. I agree with Cheryl that as caregivers, we need to encourage our loved ones to listen to their body when it's tired. However, if your husband is like mine, there is a lot of pride involved and it's not such an easy thing for them to do. My husband is starting to allow himself to nap now, especially on his dex crash days. He also stopped working this summer, so he can sleep in later now when he needs to.
One thing we do is go for walks outdoors. My husband really doesn't like me to walk alone since we live in a remote area in northern Michigan. I need to walk after having back surgeries two summers in a row. We're both benefiting by walking a mile a day now, and my goal is to get to two miles. On his dex crash days, I usually won't initiate a walk because I want him to rest, but other than that, I'll try to get a walk in because I know then he'll want to walk with me, which will help build HIS energy level, too!
Best wishes to you both,
Chris M.
My husband also experiences a lot of fatigue and often will have shortness of breath during exertion. I agree with Cheryl that as caregivers, we need to encourage our loved ones to listen to their body when it's tired. However, if your husband is like mine, there is a lot of pride involved and it's not such an easy thing for them to do. My husband is starting to allow himself to nap now, especially on his dex crash days. He also stopped working this summer, so he can sleep in later now when he needs to.
One thing we do is go for walks outdoors. My husband really doesn't like me to walk alone since we live in a remote area in northern Michigan. I need to walk after having back surgeries two summers in a row. We're both benefiting by walking a mile a day now, and my goal is to get to two miles. On his dex crash days, I usually won't initiate a walk because I want him to rest, but other than that, I'll try to get a walk in because I know then he'll want to walk with me, which will help build HIS energy level, too!
Best wishes to you both,
Chris M.
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Chris M
Re: As caregiver, how to help loved ones with exhaustion?
Hi Harleygirl
As you can see from all the posts, fatigue is a very common experience for multiple myeloma patients. It can be due to a myriad of conditions such as anemia, side effect of chemotherapy or following a stem cell transplant. It is what led me to take my husband to the emergency room in June of 2014 and the beginning of his diagnosis with IgA Lamda multiple myeloma.
As a caregiver (and his wife of 34 years) I have assumed chores and errands that he used to do but tire him out too quickly now. We are both recently retired so we don't have to get up each morning and go to work which is a true blessing because it would be very difficult for him to do. I do virtually all the driving because some of the drugs can cause drowsiness not to mention crazy chemo brain moments.
I accept his tiredness whenever it comes and we adjust our plans accordingly. We have learned to be flexible and not make concrete plans that will hurt or disappoint others if we cannot follow through. If we are out for a walk and I notice that he is falling behind me and the dogs, I turn around and we head back home. Being tired is a part of our multiple myeloma journey and I accept that.
As you can see from all the posts, fatigue is a very common experience for multiple myeloma patients. It can be due to a myriad of conditions such as anemia, side effect of chemotherapy or following a stem cell transplant. It is what led me to take my husband to the emergency room in June of 2014 and the beginning of his diagnosis with IgA Lamda multiple myeloma.
As a caregiver (and his wife of 34 years) I have assumed chores and errands that he used to do but tire him out too quickly now. We are both recently retired so we don't have to get up each morning and go to work which is a true blessing because it would be very difficult for him to do. I do virtually all the driving because some of the drugs can cause drowsiness not to mention crazy chemo brain moments.
I accept his tiredness whenever it comes and we adjust our plans accordingly. We have learned to be flexible and not make concrete plans that will hurt or disappoint others if we cannot follow through. If we are out for a walk and I notice that he is falling behind me and the dogs, I turn around and we head back home. Being tired is a part of our multiple myeloma journey and I accept that.
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PattyB - Name: PattyB
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 64
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