Love, or Duty?


Love, or Duty?

heart-630015_640This week caregiving for Sam, my husband, has felt more like an act of duty or obligation than love. I've resented doing things; I'm caregiving through clenched teeth. It's a terrible feeling. Sam's on a ventilator and feeding tube, unable to walk, talk, or move any part of his body. He depends 100% on me and his other caregivers for everything. The main way he communicates--needs, feelings, everything--is by moving his right middle finger just enough to write a sentence or word on our iPad's "Penultimate" app. If I hold the iPad and his arm just right, we can "talk" for half an hour. It's his lifeline. It's ours. He does it faster and more legibly with me than anyone else because I know him so well and can usually "word predict" where he's going with a sentence or thought. He can even type like that with my help. And this week, because he's been taking out his frustration on me, I took that lifeline away. "I'll still help you talk to others or answer email," I said. "But I need a timeout from iPad conversations with you. I'm really sick of you being angry at me."

As a result, I felt completely disconnected from him this week. I feel angry and guilty. Angry because I've devoted my life to him for the last four years, and he's suddenly accusing me of being selfish, abandoning him, wanting him to die. Guilty because he's showing some symptoms of frontotemporal dementia, and this sudden change in personality may not be his fault. And guilty because he's so "locked-in" without the iPad other than body language or "yes" and "no" eye blinks. And depriving him of the only way to express his feelings is unfair, cruel, and will just make things worse.

Sam and I have been together for 29 years, 23 of those married. Going into his ALS diagnosis, none years ago, we had a strong marriage--my first, not his-- and had worked out most of the kinks. I took on the caregiving role willingly, maybe a little out of a sense of duty, that you don't abandon your life partner at their worst moment, but much more out of love. When I read stories of some of the caregiving nightmares others have, I've felt incredibly lucky that I'm in love with the person I care for. I don't think I'm altruistic enough to do this for anyone else.

Courage, patience, trust, resilience, fortitude--these are what I think of when I see Sam lying naked in bed, washed by strangers, or dangling in a hoyer sling, arms carefully tucked into his chest. A brilliant, warm, funny, gifted and caring man who worked all his life to help others, Sam needs 24/7 care, provided by me and a team of agency and private nurses and aides paid by the VA (he's rated 100% disabled) and our lifetime savings. Tall and handsome and formerly athletic, he's without privacy, dignity, control and independence. Children stare at him when we go out. Adults avert their eyes. Visitors chatter nervously. Unless I remind them again and again, his doctors and almost everyone else talk over and about him, as if he's not there. His ability to cope with all this, not for one day but for 54 months, has been astounding. I couldn't do it. Hardly anyone can.

And that heroic resilience suddenly collapsed in December. He says no one thing precipitated it. I think it's like water wearing down a rock, slowly, slowly. In a period of depression for him, I urged him to see if he could do some creative writing, maybe even try to blog. What emerged was something like a poem, a dozen or so sentences full of bitterness and despair. The thing that upset me the most was when he wrote that the last four years had been like hell; that he'd hated every minute. He said he'd been lying to his doctors and me when he'd described his quality of life, dozens of times, as "fine" or "okay" or "good."

I know my husband well, and I know, or think I do, that some of what he was saying wasn't true. There were many, many moments when he laughed and seemed content and smiled. I tried hard to soften the contours of loss with music, nature, art, films he loved, people. For the first two years, at least, he still served on a board, finished projects, felt productive. He was safe, at home, cared for by caregivers who loved him and stayed, and visited by family and friends who let him know he was still important to them. He sat in our garden, watched a butterfly being born, went on outings. But maybe none of that was enough to offset the minute-by-minute frustration, especially of not being able to write or talk, his lifeblood. I knew he felt that frustration, we all did, and spent many hours trying to overcome it by working with him on an eye-gaze computer, which was slow and tedious, until we settled on the iPad. But maybe I was overemphasizing his resilience. Seeing what I wanted to see.

In January, Sam started writing that he couldn't bear living like this anymore; that he waned to die. His words hit me like a blow. Sam's an agnostic, and has always feared death. It was one of the reasons he said yes to the ventilator; as he wrote again and again, "I want to live." When his doctor asked why, he pointed to me. As impaired as he was, he wanted more time for us. I did too. We were both raised in a religious tradition (Reform Judaism) that doesn't believe in an afterlife. We survive in memories and the deeds we do. In terms of death beliefs, most religions are more hopeful and comforting. Sam could have chosen to die at any point in the last four years. With ALS, and maybe other diseases, a ventilated patient can say "enough" and a doctor starts a process which starts with assessing state of mind, and ends in turning off the ventilator, and death. Now, suddenly, without warning, Sam was at that point. I was shocked and frightened. However I had dimly assume he would die, it wasn't right now, and it wasn't like this.

I did what a caregiver does. I sought help. I arranged doctor visits, a medication review, more time with the psychologist, a psychiatric consult. I gave Sam a choice of spiritual helpers I'd involve--our rabbi, an Orthodox one (they do believe in a "world to come"), mindfulness tapes, a hospice minister people recommended. We discussed hospice, which Sam rejected. I told close family and friends what we were going through, and they increased support. A new antidepressant helped.

The decision to take someone off a ventilator is made carefully. The doctors want to be sure this is what the person really wants. They have to express that consistently, for a month or more. And Sam wasn't consistent. He felt trapped. He didn't want to live like this anymore. But he hated death. It was an impossible choice, and he couldn't make it.

Sam and I used to tell each other, like Humphrey Bogart tells Lauren Bacall in "Casablanca": "We'll always have Paris." But the truth is, Sam and I will never again have Paris, or most of the things that we loved. Sam will never be able not to live with ALS. I tell Sam I'll help him carry out either decision. I ask him how we could change anything about his day-to-day situation, but he doesn't know. I don't either. And I've been honest with him. Except when I'm really really angry, I don't want him to die. I don't even need to say it much; I've been crying it on his chest, somewhere between the feeding tube in his stomach and the trach tube in his throat.

Since January the situation has been fluid and exhausting. And it's been made worse by the fact that Sam wants me 24/7, the only time he feels safe. And I can't do that. It's too much. I can only do 12/7 or 14/7. I need space. I need my friends, and time to carry out all my other caregiving responsibilities, and to visit my mother across the country, who has dementia, and time to read your blogs and respond to them, and to try to write this, which I keep updating and revising. So Sam is furious. He wants to divorce me. He thinks I'm having affairs. He thinks I've abandoned him, that I'm selfish. Intellectually, I know that that's mostly stress and fear and maybe dementia speaking. I try not to personalize it. But I push back. When reasoning doesn't work I set limits. I tell him I'm going to walk away with the iPad, and I do. Once I was able to redirect his "angry at you" list to "gratitude for you," and it felt great. Once he did that himself. I did visit my mother. I do see friends. I am writing this. But this week my heart has been breaking because at this moment when we really need each other to get through this, we're so apart.

But... Last night we overcame that. We were tender. I couldn't stand not communicating with him for three days, to just see him alone, watching movies, his eyes following me or another caregiver, unable to "speak." I missed him. I told him so, and we had an iPad conversation after I'd set some rules. And he told me he's no longer angry at me, that he loves me. He told me he's dying. I told him he's not, physiologically, but I understand that he's tired. I told him how much I love him. I brought up burial issues, since he's drawing comfort from an Orthodox rabbi, who believes in God and an afterlife, and I'd arranged things with another cemetery, another rabbi. "I'm not dying right now," he responded. We have time.

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