I am in year five of dealing with my husband's myeloma. He is now in another roller coaster period where he is on and off chemo. Feeling OK or feeling listless, no appetite, continuous cough, sinus stuffed.
My moods and entire outlook depend on whether my husband is having a good or bad day. I am alternately angry and tearful. How does one deal with this roller coaster? One day thinking my husband can return to normal life, the next day thinking life has to stop until he feels better.
Details:
He goes off chemo (dex+Cytoxan or dex+pom+Cytoxan) because he is constantly getting sinus infections and acute acid reflux which causes a continuous cough. He has had an acute sinus and reflux problem for almost two months. There has been little change during this time even though we have consulted his Onc and an ENT. Yesterday he suddenly had a day where he felt great so we cancelled an appointment with a second ENT. Today he is much worse.
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BellesPensees - Name: DeLaPaix
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 3/09
- Age at diagnosis: 57
Re: Caregiver roller coaster
Hi Belles Pensees (Beautiful thoughts?) ... I think that as a caregiver you need to take care of yourself as well as look after your husband. It's not great that myeloma has taken over your lives to such an extent, even though that is the reality of it for you both.
Do you have a hobby, or some friends to have coffee with, or something outside the medical day to day stuff to help to cheer you? Five years with a disease tells me that it is chronic in a way, and hopefully you can get some nice things in your life too.
Do you have a hobby, or some friends to have coffee with, or something outside the medical day to day stuff to help to cheer you? Five years with a disease tells me that it is chronic in a way, and hopefully you can get some nice things in your life 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: Caregiver roller coaster
I think Nancy has some good advice. It seems that you might be trying to share your husbands pain and adding it to the pain you feel as his spouse and caregiver. You don't want to be worse off than he is and possibly you should see if you can get some hands-on help with coping.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Caregiver roller coaster
As a caregiver to my husband I can certainly sympathize. My own emotions and outlook are very much affected by how he is feeling and although I try to "have a life" and my own interests etc. it's not easy to distance yourself. I kind of feel like there is a little black cloud over my head most of the time. He recently had better news on his blood results and the cloud blew away for a bit and I felt so much better. It made me realize how much it weighs on me most of the time. The other aspect is if I am occasionally impatient or annoyed with him about something I feel guilty because he has this disease and doesn't need any negativity. The focus of course, needs to be on the patient but I think many caregivers feel rather lonely as they struggle to come to terms with what their spouse is dealing with yet try to keep their feelings to themselves.
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Jainsie
Re: Caregiver roller coaster
I was going to post something today, reminding the caregivers to care for themselves as well as their family member. I forgot just how important this was until I ended up in the ER myself yesterday. It is truly essential that we care for ourselves. I had not realized how sick I was until it was truly awful. (I now have pneumonia).
In addition to being my husbands caregiver, I am also the primary breadwinner. I've been working crazy hours in preparation for his stem cell transplant. After two 12 hour shifts, I nearly collapsed this weekend. Thank God for my wonderful caretaker, my sister, who recognized that seeing a doctor was not going to wait till the morning!
This really got me thinking about this caregiver role I've taken on. My husband has other health issues besides the myeloma. Me spending even a night in a hospital would throw our whole world into a tailspin. That is what finally made me really stop to think about how truly important it is for me to take care of myself. So that will be my new journey. And I must say, this really was an awakening for my husband as well.
Everyone please take care of each other!
In addition to being my husbands caregiver, I am also the primary breadwinner. I've been working crazy hours in preparation for his stem cell transplant. After two 12 hour shifts, I nearly collapsed this weekend. Thank God for my wonderful caretaker, my sister, who recognized that seeing a doctor was not going to wait till the morning!
This really got me thinking about this caregiver role I've taken on. My husband has other health issues besides the myeloma. Me spending even a night in a hospital would throw our whole world into a tailspin. That is what finally made me really stop to think about how truly important it is for me to take care of myself. So that will be my new journey. And I must say, this really was an awakening for my husband as well.
Everyone please take care of each other!
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Guest
Re: Caregiver roller coaster
I can totally relate. My husband had his SCT just over a year ago. We have both been blessed very much by the fact that he pretty much sailed through all the treatments with very little issues. I was like most though when he got diagnosed. I went to every single apt, took notes, did research, made it my life 24x7. I ended up with a terrible alcohol problem. Forgot to take care of myself and didn't deal with things the right way.
I have had a ton of counseling since then which has greatly helped. I dread the day we get any type of bad news about his myeloma raring up its ugly head again. I am fairly sure that day will come though. He has the type that puts him at high risk. I pray a lot and try to realize that I need to have time for myself though. I don't even want to imagine life without him but I have to face the fact that that day could come. Really it is that way with all of us. We could all go at any given minute so we need to make the most of every single day and not dwell on the negative things.
I try to do something nice for myself now and then like get a massage or facial. Even weekend getaways to a cute cabin sometimes for the 2 of us just to leave reality behind for a little bit.
Best of luck to everyone dealing with this disease. God bless you all!
I have had a ton of counseling since then which has greatly helped. I dread the day we get any type of bad news about his myeloma raring up its ugly head again. I am fairly sure that day will come though. He has the type that puts him at high risk. I pray a lot and try to realize that I need to have time for myself though. I don't even want to imagine life without him but I have to face the fact that that day could come. Really it is that way with all of us. We could all go at any given minute so we need to make the most of every single day and not dwell on the negative things.
I try to do something nice for myself now and then like get a massage or facial. Even weekend getaways to a cute cabin sometimes for the 2 of us just to leave reality behind for a little bit.
Best of luck to everyone dealing with this disease. God bless you all!
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LizR
Re: Caregiver roller coaster
Belles Pensees,
I am the myeloma patient and my girlfriend has been my caregiver since my diagnosis. On the day of my first visit with my oncologist when I was diagnosed with myeloma they had us me and my caregiver meet with a social worker in oncology. We learned there were regular monthly support meetings in my area just for caregivers. Maybe they have something like this in your area. Might be a good forum to vent and share what you are going through with others who are doing the same.
Fortunately I was not really high maintenance and this allowed my girlfriend to run, swim and take long bike rides with our cycling group. She did not have to build her life around me and my myeloma problems 24/7 but it was tough not being able to do these things together like we used to.
I am the myeloma patient and my girlfriend has been my caregiver since my diagnosis. On the day of my first visit with my oncologist when I was diagnosed with myeloma they had us me and my caregiver meet with a social worker in oncology. We learned there were regular monthly support meetings in my area just for caregivers. Maybe they have something like this in your area. Might be a good forum to vent and share what you are going through with others who are doing the same.
Fortunately I was not really high maintenance and this allowed my girlfriend to run, swim and take long bike rides with our cycling group. She did not have to build her life around me and my myeloma problems 24/7 but it was tough not being able to do these things together like we used to.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Caregiver roller coaster
Belles Pensees, I'm so sorry you are having a hard time. Being a caretaker is a hard job, and while I agree with the suggestions to "take care of yourself" I also know that's often easier said than done.
When EJ was diagnosed, he had gone to the beach for a weekend on the heals of his mothers death. He was diagnosed as a result of a ruptured diverticulitis which required immediate removal of a foot of his colon. I rushed out to the beach where he was (3 hours a way) but could only stay for one day, as I had to be back at work. The hospital ran all the required tests to diagnose multiple myeloma, and when EJ received the news, he was alone. I cried. I went out again the following weekend, but he was not healing well, and could not come home, so I returned home alone, with a plan to return mid-week the following week.
While we were waiting, EJ's father had a heart attack and passed away, leaving his disabled sister who lived with him alone. And, to add insult to injury, the day they were going to release him -- the day I was supposed to drive back to the beach -- a storm blew up the east coast flooding out roads and closing the Bay Bridge. I couldn't even get to him. We had to beg the hospital to keep him an extra day.
Next to the death of my father this was the most stressful event of my life. But both of these things taught me a useful lesson. If possible, feel what you are feeling in the moment you are feeling it. Don't minimize your emotions. Otherwise, they have a way of sneaking up on you later, and having to relive the pain to get back your equilibrium is just as hard as going through it the first time.
You mention that your husband is on a drug routine that doesn't seem to be working well for him (sinus colds, etc.). What is the game plan? Understanding what the goal of EJs treatments helps me manage my expectations. I function a whole lot better when I know what the goal is, what the milestones are, what the timeline is. etc. I can get through almost anything as long as I have some kind of map. And, when things aren't working as planned, it also gives me the opportunity to speak up.
Hope that helps. Good luck,
Lyn
When EJ was diagnosed, he had gone to the beach for a weekend on the heals of his mothers death. He was diagnosed as a result of a ruptured diverticulitis which required immediate removal of a foot of his colon. I rushed out to the beach where he was (3 hours a way) but could only stay for one day, as I had to be back at work. The hospital ran all the required tests to diagnose multiple myeloma, and when EJ received the news, he was alone. I cried. I went out again the following weekend, but he was not healing well, and could not come home, so I returned home alone, with a plan to return mid-week the following week.
While we were waiting, EJ's father had a heart attack and passed away, leaving his disabled sister who lived with him alone. And, to add insult to injury, the day they were going to release him -- the day I was supposed to drive back to the beach -- a storm blew up the east coast flooding out roads and closing the Bay Bridge. I couldn't even get to him. We had to beg the hospital to keep him an extra day.
Next to the death of my father this was the most stressful event of my life. But both of these things taught me a useful lesson. If possible, feel what you are feeling in the moment you are feeling it. Don't minimize your emotions. Otherwise, they have a way of sneaking up on you later, and having to relive the pain to get back your equilibrium is just as hard as going through it the first time.
You mention that your husband is on a drug routine that doesn't seem to be working well for him (sinus colds, etc.). What is the game plan? Understanding what the goal of EJs treatments helps me manage my expectations. I function a whole lot better when I know what the goal is, what the milestones are, what the timeline is. etc. I can get through almost anything as long as I have some kind of map. And, when things aren't working as planned, it also gives me the opportunity to speak up.
Hope that helps. Good luck,
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: Caregiver roller coaster
This is a great discussion. Thanks, everyone, for all the contributions. Wish I could add more wisdom of my own, but so much has been said -- so well -- already.
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