National Leukemia and Lymphoma Awareness Month: Thoughts on Living and Loving Someone with a Terminal Illness

Question: In your memoir, A Breath Away, your husband was diagnosed with a rare form of bone marrow cancer and given just three months to live. That news shook you deeply… you had two very small children at home. Yet somehow you were able to regain your inner footing and not fall apart. What can you tell us about how to handle a very difficult diagnosis?

Jeanne: Stand strong. At the moment, you may feel like crumbling but others are depending on you, perhaps your children and certainly the person who has been just diagnosed.

You may need to reach down inside yourself and find a core of strength… maybe one you didn’t even know you had.

Question: What if someone feels devastated and doesn’t feel strong at all. Where do find this core of strength?

Jeanne: For me, it came from the long-held notion that I am strong and capable. And this is true for each of us. We are much stronger than we think. Only many of us don’t know this until we’re challenged and forced to look inside for strength.

First, you may need to silence the inner chatter – the voices of fear and anxiety. And then you may also need to silence the voices from outside you, as people wring their hands and express fear and pity.

Getting perspective is very important. The truth is, you don’t get through adult life without going through fire of some type or another. You can look back at other difficulties you’ve survived and say, ‘If I got that I can get through this, too.’ You can also tell yourself, ‘If I’ve never been tested this severely before I am capable of developing the skills to get me through.’

Bottom line: You really do make a choice — to crumble or stand strong.

Question: A difficult diagnosis is one thing. But the doctors said your husband had just three months … almost no time at all, when you thought you were going to have a lifetime together. How do you keep from panicking?

Jeanne: Remember, doctors are human, and part of all of our humanity is that we’re fallible. We make mistakes. So the doctors do not have a crystal ball and really don’t know the future – the future has yet to be written.

Practically speaking I say, always seek a second opinion. Find someone with expertise on whatever condition your loved one is afflicted with. Find the people who are doing the research, exploring new treatment option
s and treating large numbers of people. You never know what front-edge breakthroughs are out there until you get determined and start looking.

Question: How do you, as a spouse or partner, relate to someone you love who may be undergoing sudden physical and emotional changes?

Jeanne: In all relationships there is give and take. Sometimes you’re the giver. Sometimes you’re the receiver. It’s important during difficult times to find a generosity of spirit. It’s important to ask, `How may help you.’ If that offer is made from a place of humility and love, hopefully the other person can be the graceful receiver of your love and care.

Question: What about the person who now needs to carry the load – of say, a house, a family, finances. How do they shoulder the weight?

Jeanne: If you have built your life on loving relationships, people will come along who are willing to help you carry the load. You may also need to be open to being the gracious receiver of assistance from people who love you. People want to help. Don’t try to be a hero or martyr. It is a time for humility so let them help.

Question: When there is serious illness, physical intimacy can all but vanish. How do you handle that loss?

Jeanne: As the physical body deteriorates, you have the chance to connect on a deeper mental, emotional, and spiritual level. The relationship is still “whole” it’s just that the different aspects of it are portioned differently. You shift your view, and when you do that you say to the person who is suffering ‘If I can’t be close with you physically I can still connect deeply with you emotionally and intellectually and spiritually.’

Question: So far we’ve talked about relating as partners. Often, children are involved. What advice would you give to the person who has to bring very difficult news to a child about the other parent or partner?

Jeanne: First, think through the age-appropriateness of the information that needs to be shared. What can the child understand? What’s their frame of reference? Relate to them on their level.

Remember, too, you don’t have all the answers… and you don’t have to have all the answers.

Third, keep your children focused with what needs to be dealt with “here today.” There isn’t anything to be gained by looking too far into the future; doing so only creates worry. I would tell my children, who were very young at the time, “Daddy isn’t feeling well. So we’re going to do what we can to make Daddy comfortable today.”

Finally, it’s so important to try to infuse light into the everyday things of life. Plan a nice breakfast, a simple outing, the special bedtime routine and you’ve spent a good day together. Sting together a few good days and you’ve had a good week, a good month, a good year and a good life. Try to provide your child and their beloved parent as much good time together as is possible.

Question: So, even with a very difficult diagnosis, you would not tell them directly, “Daddy is dying.”

Jeanne: I’ll go with the wisdom my husband gave to me. Initially, when I got the news I was devastated. But Fred said to me, “Don’t mourn me while I’m here. “ That spoke to me at a deep level, and I knew he was right. As long as the person you love is here there is still more living and loving to do.

So, again, for the sake of the family I would focus on living well in the moment. When you do that, you create positive memories for the child to hold onto when the parent is gone. They feel loved and cared for, and that gives them an inner touchstone to hold onto if things should get rough later on.

Question: Jeanne, one of the strongest things that comes through about you — and in your book – is that you’re so life affirming. Given what you’ve gone through, where does that come from?

Jeanne: My faith is a true gift. Others have said to me, ‘I just don’t have that kind of faith.’ But the truth is, spiritual vision can be cultivated. And I do work at it.

That means, I don’t wallow in negativity. Now if things aren’t going well I speak my mind. I’m a pretty direct person. But I also work to try to change what I can change in a situation. This way I can be positive about where my life is at and where it’s going.

Surrounding myself with people who are life affirming also helps.

Question: Any final words of advice you have to offer to others who are on this journey.

Jeanne: Just this-life is a terminal event for all of us. None of us ever know how many days we will be blessed with on this earth. So live in the light and be grateful for each and every day that you are here and speak your truth and share your love with those who accompany you on the journey. Love is the currency of the soul and travels with us. It is truly all that matters.