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The Caretaker's Challenge
Posted: Oct 25, 2016
The Caretaker's Challenge image

BY CHERIE RINEKER When we hear the dreaded words “You have cancer”, life seems to fall apart. Having cancer does not only affect the patient, it is a blow to the spouse, the children and the rest of the family as well. How married couples handle this difficult diagnosis is as unique as the patient and their families are themselves. Remember when you promised each other all those years ago to be there in sickness and in health, in good times and in bad? Now here you are with an “incurable” diagnosis, endless treatments and side effects, with no end in sight! How could that not affect your most important relationships? Sometimes it brings a couple closer but studies show that cancer can also increase divorce rates. For both the patient and caregiver, emotional support can be as important as physical support. When it isn't  there, the diagnosis becomes even more devastating. My husband and I agreed that sharing our story might help others who are struggling with the same things we are. Shortly after I was diagnosed, my husband became tired and disconnected, spending most of his time on the couch, either watching TV or napping. He seemed depressed, uninterested in anything but work and TV. He said he was just tired, but I felt it was more than that. I suggested that he see a psychiatrist and get a physical. Could it be his hormones or thyroid levels? On top of that, he used alcohol to self-medicate, which made him easily agitated and critical. I love my husband, and I know he loves me, but cancer is challenging and was stretching us to our limits. He takes care of me and my daughter financially, and I feel very blessed in that way. It is the emotional stuff, the times when the pain gets too much, or when I am tired of the whole cancer, relapse, treatment, hospital thing, and I just want a soft place to put my head and cry. What I've learned is that emotional health for both of us is just as critical to wellbeing as our physical health. Inviting my husband to seek counseling wasn't welcomed with open arms, but from my perspective, dealing with a spouse who has a terminal cancer is definitely in the "desperate times call for desperate measures" category. As a nurturer myself, I simply did not understand how he could not do that which comes so natural to me. To sit with me, hold my hand, allowing me to speak, cry with me, and tell me all will be alright, without trying to fix that which wasn’t his to fix. The thing is, he is not me. I've had to find peace knowing that though he has many wonderful qualities, being my main source of emotional support is simply not his forte. Here are the things that have helped me cope:

  1. Don’t be afraid to talk to somebody. Keeping feelings bottled up will neither serve you, your health, or your family. Talk to your doctor, a therapist, even the hospital’s social worker. Most hospitals have them. Nobody should go through cancer alone. Find yourself a good support group, whether online or physically. If your spouse is not emotionally supportive, you need to find others (friends, family, etc.) who are.
  2. Remember too, how hard it must be for the caregiver to take care of a sick person who will likely never be healthy again. Though it's exciting that life expectancies in myeloma have dramatically increased, the caretaker may feel left out when it comes to getting sympathy, when attention consistently goes to the patient. They may feel their issues may be overlooked.
  3. Remember to take care of each other! Even if you can’t do everything you used to, you can still verbally be there for him or her. Remind them how much you appreciate them when they are doing nice things.
  4. Don’t criticize. Empower him or her by noticing all the little things they are doing. Most people will do more when they get positive reassurance, and will do less when they feel criticized. Complimenting your spouse will go a long way.
  5. Try humor. I have started to make fun of things, especially the things I do “wrong” in his eyes. Humor deflates anger like nothing else, and don’t be afraid to laugh at yourself.
  6. To the caretakers: be sure to take care of yourself!!! Find your own support group! Get a hobby, exercise, eat smart, and in moderation. This is not a sprint, you are participating in a marathon, whether you signed up for it or not, and you need to be prepared for the long haul. The healthier you feel; the easier life will be for the both of you. This goes for the patient as well, of course. Cancer is a team sport. Both people need to take care of each other, both need to be patient with each other, and please, forgive each other… OFTEN! Oh yeah, and did I say you need to be patient?
The author Jennifer Ahlstrom

about the author
Jennifer Ahlstrom

Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of HealthTree Foundation (formerly Myeloma Crowd). 

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