Life Matters Media
Start the most difficult conversation American isn’t having- 
the conversation about our end of life preferences

Bringing A Long Life Together To A Close

'Hand Holding' Courtesy Steven Depolo via Creative Commons.
‘Hand Holding’ Courtesy Steven Depolo via Creative Commons

“Each of us is entitled to intimacy and pleasure in life, regardless of how our body looks or at what stage of life we are.  The fact that we might be sick, elder, or dying need not cut us off from these precious life-enhancing things. However, we will most likely have to take the lead in defining what it is that we need and want, and then communicate that to those who are in a position to answer our need. We ought to have confidence that this will be as enriching for partner as it will be for us.”

Clare and her husband, Charley, have been married for fifty-three years. They have four children, nine grandchildren, and five great-grandchildren. Clare’s leukemia, in remission for more than ten years, has recurred. This time, it is incurable.

Clare has decided to forego any of the heroic, life-sustaining measures for which modern medicine is so famous. She and her doctors agree that hospice is her best option. “I’ve done my homework. I’ve shopped around,” she says. “I interviewed all the hospices in town and have chosen the one I feel will honor my wishes for the kind of end of life care I want.”

Clare has lived a rich, full life. “I was a career-woman long before there was such a thing as a career woman,” Clare says. “I’ve always been a take-charge kind of gal. This leukemia may very well kill me, but it will never get the best of me.” Her illness has made her very frail. Her skin is almost translucent. She has an otherworldly look about her, but there is no mistaking her remarkably robust spirit.

Her youngest son, Stan- her one and only ally in the family- brought her to our meeting. Stan tells me, “She’s feisty all right.  There’s no flies on her, and the ones that are there are paying rent.”

Clare’s biggest concern is her family. They are pressuring her to fight against death, even though she doesn’t want to fight anymore. She wishes that they would join her in preparing for her death, rather than denying the inevitable.

I worry about how they will manage when I’m gone. And even though I’m ready to die, I feel as though I need their permission before I can take my leave.

I try to tell myself that my Charley will be just fine after I’m gone. After all, he does have our four grown kids and their families to look after him. But deep down, I know how lost he’ll be without me. Even after all these years, he still needs me to help him find a missing sock!

Whenever I try talking to him about how he’ll manage when I’m gone, he gets this awful flush across his face and starts shaking like a scared little boy. I feel so badly for upsetting him like that.

I’m so confused! He’s my husband and has been my best friend for well over fifty years, but I honestly don’t know how to reach him on this one.

Clare straightens herself up in her chair and continues.

Stan, here, is the only one I can talk to. Everyone else, including my husband, won’t hear a word when I start talking about planning my funeral or who will get my antique Tiffany lamp. They just say, ‘Oh, mother, stop talking like that, you’ll outlive us all.’

I know they mean well. They’re just scared and upset. I know I only have a short time left to live, so I want it to be real. I’m sick of always having to smile and pretend when I’m with them.

Clare’s immediate concern and the reason for our get together is her husband. She is afraid that they are drifting apart right when they need each other the most. I ask her for a little background on their intimate life together. Here’s what she had to say.

I was well into my thirties when the woman’s movement began. It was a time of great awakening for me. Charley was threatened, but I was able to win him over in time. It was only then that our sex life started in earnest. I finally realized that sex could be about pleasure and not simply about duty.

Even now, Charley and I are intimate, or were until the last couple of months or so. After we both turned 60, our sex wasn’t like when we were youngsters, but it’s just as special.

My main concern is the medications I’m taking for the pain. I’m woozy when I take them, but irritable without them. I want to be more available to Charley for the closeness that’s so important, but I’m often too out of it. This is a problem for Charley, too, because he doesn’t know how to touch me anymore. He keeps his distance, and this only makes matters worse.

How do I change this? Maybe it’s just over. What a sad thought that is.

I reach for Claire’s hand, and tell her how touched I am by the loving depiction of the intimate life the couple has shared. I know it won’t be easy for them to see this wind down. However, the closeness and tenderness they have had throughout the marriage need not stop them now.

I ask her if they still sleep together in the same bed, and if Clare would be comfortable initiating cuddling with Charley. She would.

Then here goes my suggestion: a regimen of spoon breathing and guided-hand touch that will work for them both. What I tell her follows:

You will, of course, need to take the lead role in this since, as you say, Charley no longer knows how to touch you. But once he gets the hang of it and has your permission to do so, he can continue even when you’re not able to reciprocate or even respond.

Lay on your side with Charley on his side close behind you like two spoons. Then, see if you can match one another’s breathing pattern. You will be amazed at how calming and comforting this will be. It will also be a very effective way to reestablish a threshold for what is possible between the two of you now, in this final stage of  your life.

Now the guided-hand touch; take his open hand in yours and guide it to where you like to be touched. Long strokes, slow strokes, short strokes, soft strokes, or just having his hand rest on you. Show him the kind of pressure you are comfortable with where he is touching you. Once you’ve established a simple routine of breathing and touching, give Charley permission to carry on even if you happen to fall asleep.  

Because this breathing and touching technique is so gentle and loving, it should be able to serve you even as you are actively dying. But you’ll have to let Charley know that this is what you want. You could tell him that you want to die in his arms. What an ideal way to bring your life together to a close. Do you think Charley will accept your invitation?

Clare isn’t sure, but says she thinks that- if suggested in a way that lets Charley know he would be doing it for her- it might work.

I tell her what I know to be certain: when words fail to communicate what is in your heart, you can always rely on touch. Maybe the two of them will find that nothing needs to be said at all. It could be the fondest of farewells, and something he will never forget.

Each of us is entitled to intimacy and pleasure, regardless of how our body looks or at what stage of life we are. The fact that we might be sick, elder, or dying need not cut us off from these precious life-enhancing things. However, we will most likely have to take the lead in defining what it is that we need and want, and then communicate that to those who are in a position to answer our need. We ought to have confidence that this will be as enriching for partner as it will be for us.