A recent thread on the ACOR myeloma mailing list discussed the problems of care givers. More specifically, emotional issues related to being the caregiver to some one dealing with a chronic and terminal disease. The post that sparked the discussion was from a patient who was concerned about her caregiver/spouse's worsening problems with alcohol since she was diagnosed with myeloma.
I've received lots of good advice as well as valuable information from this list, and this time was no exception. Here's a sampling of the responses.
From Barb who is a patient: "There is no doubt that when someone has MM, the whole family has MM. Everything needs to be reviewed to make room for this new reality. And people DO change when confronted with such a serious illness. Many relationships do not survive under the strain, especially if the existing dynamics are not great. The most telling thing you shared was that your husband drinks, probably too much even before you became ill, and now even more. This is a destructive behavior that has clearly been with you for a long time. In health, you probably had coping mechanisms that kept the marriage moving along. But right now, most of your coping skills must be reserved for your fight with myeloma, and that exposes all the cracks in your marriage."
From Linda, a caregiver: "It is hard to be a patient, but it is also very hard to be a caretaker.
The patient has to deal with the physical aspects of MM, along with facing his/her mortality. A caretaker has to deal with watching someone they love suffer and worry. A caretaker also has to deal with their own fears, fear of losing a loved one, fear of an uncertain future, fear of being alone.
They also assume more responsibilities as they sometimes now must take care of the finances, the family, the household, supporting the family, all while being the transportation, scheduling dr. visits/treatments, keeping track of meds, educating themselves about this horrid disease. Their lives too have stopped. During bad times, vacations are cancelled, social activities cease, friends drift away. And yet, our role is not to let on that things are going badly, we don't want to burden our loved ones with any more than is necessary and so we bear the brunt. It is sometimes hard not to yell or cry.
We are only human. I, too, lost my temper at times with Phil, but he always understood why. I, too, had times when a bottle of wine was very comforting to me. All in all, during the 2 1/2 years he fought his battle, we had many ups and downs but in the end, we were made stronger by them and closer than I'd ever dreamed possible. I look back over those 2 1/2 years and wonder "how did I get through them", but I also look back at those 2 1/2 years and wish he were still here and that I could do them all over again. Would I change some things, yes, probably, but not many.
Guess this is the first time I've actually put these thoughts to words since he passed 8 1/2 months ago. Thank you for letting me share."
From a patient: "And just to add one more perspective, I just lost my beloved husband, my caretaker, of 38 years. He was always so worried about me and perhaps I worried too much about myself. He was afraid of losing me, and now I have lost him instead. Life is not always so simple and often takes us down a different road than we sometimes expect."
From Val, a caretaker:
"Being a caregiver to my dear husband Bob has been the hardest thing I've ever had to do but I know that this is the hardest thing he has ever had to go through. Not only does he have to deal with the fact that he has MM, but he has had to almost totally hand over to me the day to day responsibilities of running our lives. Some days I wish I could trade places with him, just so that he could have some relief. Some days I know he wishes he could trade places with me, if only to take some of the burden off my shoulders.
This is hard on every one of us but I'm grateful to have all of you on this list to turn to. Yes, sometimes I do have meltdowns. So does Bob. We just try not to have them on the same day. We also try to laugh about all the craziness that goes with trying to cope. I've learned that a little humor and a little laughter goes a long way when you have to deal with everything that comes with MM.
Although I wish I would never have had reason to have to join this list, I am so grateful to have found such a wonderful and supportive group of people."
My own caregiver experiences have been mostly positive, but I won't say that our life together has been in any way enriched by myeloma! I feel guilty because I can still work at a job that I love. I feel guilty because I don't have to take all those meds and have pain most of the time. I feel guilty because Richard deals with all of it with courage and grace while I rant and rave!
I am also very lucky that our marriage was rock solid when Richard was diagnosed. I'll be there for him, ranting and raving, until the end, as he would be for me. But it's not always easy!