The dying of the light

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I began grieving for Jack almost ten years ago, when the first tell-tell signs of his disease first showed themselves. We lived then on the edge of the jungle, a twenty minute walk to the beach and a five minute stroll to the river where, in the dry season, I waded into waters which did in fact occasionally house crocodiles.  This was in the country of Panama. If you’ve read Clueless Gringos in Paradise, you know how we got there.

Relocation therapy is what the counselors call it.

Jack always said, “Every five years I change jobs, locations, or wives. Often all three.”

I’ve been with Jack for almost thirty years now.

“I messed up,” he’d tell people, “went out on permanent disability from my job, and this wife just moves with me when I relocate. I can’t get rid of her.”

He was kidding. Partly kidding.

Where was I going with this? I’m not quite myself right now, am at that stage where I have a check list before I leave the house. Keys? Purse? Dog inside and safe? Hair combed? Shoes on my feet? Yesterday morning I carefully swallowed my Tuesday morning pills, made my tea, let the dog out. After which, I slowly and with great pride in how I was remembering to take care of myself, took my Tuesday evening pills as well. When talking to friends I realize, usually just as I’m finishing the story, that just two minutes ago I told them the exact same thing.

I remember where I was going with the Panama story.

Because Jack’s Progressive Supranuclear Palsy has, as he himself says, “eaten away at him one piece at a time,” my grieving process has been long and slow. In Panama, when Jack suddenly lost his sense of direction and when his PTSD rages became more and more frequent, I was convinced we needed to get back to the states and VA medical care as quickly as possible. During our five years in Arkansas I often pulled the car over and cried, grieved for the husband who was disappearing before my eyes. Those were the years when Jack fell more and more, became increasingly irrational and jealous, demanded more and more attention from me as he became less and less able to get out and do things on his own. Arkansas is where, after a series of accidents, he stopped driving, gave up his license.

We’ve been back in my hometown of Eureka, in northern California, for about two and a half years. During this time, he has gone from walking unaided, to using a walker, to a wheelchair. At first he was somewhat mobile in the chair, able to get himself from room to room. Then he was not. The VA got him an attendee operated power chair. I, of course, was the attendee. He could not move one inch in that chair without my help.

He developed double-vision. Then his sight began to slip away. His tremors, at first controlled by dopamine that can be so effective in Parkinsons, came back. With a vengeance. He had more and more trouble feeding himself. We went to finger food, then smoothies. Now he is being fed a spoonful at a time by helpers who never pay enough attention to make him happy, who feed too fast or too slow, or can’t understand that that particular grunt means applesauce and not minced turkey. His speech is slurred to the point where communication is difficult at best. It takes two people, two strong-backed people, to move him from bed to chair.

As he lost more and more control, more and more physical and mental ability, I grieved. There came a point, about six months ago, when his day-to-day care was simply so exhausting, when he became so demanding and unable to understand that I could only do so much, when his  talk of moving to Asia and his inability to accept the reality of his situation – of our situation – simply overwhelmed me. He fell into me. Accused me daily of cheating on him. Yelled at me because I had it so much better than he had it. Then, at the end of days when it seemed I could do nothing right for him, every night, when I put him to bed, he said, “Thank you for everything you did for me today. I love you.”

And this was the worst moment of my day. I came to hate those rout words.

“Don’t you dare say you love me,” I wanted to shout at him. “Love isn’t words. Love is fucking action. It’s not demanding something every single time my butt hits my recliner. It’s not accusing me of cheating on you every single damn time I’m out of your sight. It’s not throwing your plate across the table because the bacon is too crisp.”

Every night I said, “I love you, too. See you when I see you.”

Every day ended in anger.

In about an hour, I am meeting the hospital discharge social worker. We will walk into Jack’s hospital room and tell him that a VA ambulance is picking him up at 1:00 today to transport him first to the neurology ward of the San Francisco VA hospital, and then to the Long Term Care facility next door. San Francisco is almost three hundred miles from me.  He’s been in our local hospital for fifteen days.

It turns out that anger, exhaustion, and a tight daily schedule do a pretty good job of burying grief. I’m learning that when that combination is taken away, that same grief, long buried, blooms full-blown into the soul.

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About Author and Speaker Pamela Foster

Pamela Foster is a speaker and author. Her first book, Redneck Goddess, is available at local bookstores and on Amazon. Her second book, Bigfoot Blues, will be available in August 2012.
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12 Responses to The dying of the light

  1. Kay gay says:

    What turmoil! It goes without saying that you’ve done more than most would and have suffered more than most would tolerate. What strikes me also is your willingness to be candid about all this. I can’t thank you enough. My struggle is so difficult to describe- so difficult to educate people about! You are a courageous woman! I pray (with great faith) that you find peace and joy in the time to come. Stay in touch! <

  2. laurewaytek says:

    Whoo! I can’t even imagine. Good to see you are considering yourself worthy of self-care. Keep writing. I look forward to each post.

  3. My heart goes out to you. Thanks for sharing your story. In my opinion, you’ve always been an angel. God bless you both.

  4. Lin says:

    So much of your experience parallels mine—except the stint in Panama with the alligators—that I cried. For you, for me, for Jack, for Dave. Life can be so unflinchingly unfair. I have no words of hope or even of comfort. PD and LBD have stolen my emotions. I’ll think of you and the happier days we shared with the men we love and grieve with you at every sunset.

    • I take strength in knowing you are on this journey with me. Jack being so far away has flattened my path, allowed me to catch my breath. This road, too though is strewn with unexpected rocks and pitfalls. I go about daily life, congratulate myself in finding life’s small joys, and the next moment I’m bawling like an abandoned child with the realization that my husband, whose care consumed my life for years, is now three hundred miles away, and I have no input, no knowledge even most days, of what in world is going on with him. He can no longer communicate well enough to be understood, even my me, on the phone. During our last conversation I recognized only two things he said.
      “Cell phone.”
      Meaning he wants me to bring his when I visit, or perhaps he wanted me to mail it to him. That part was unclear. What IS clear is that he can no longer use his cell phone. Can’t see the numbers to dial, can’t figure out how to answer it, and has deleted all his contacts.
      This request was followed by a few minutes of him struggling to communicate, me saying over and over, “I’m sorry, honey, I can’t understand what you’re saying,” a huge sob came through the phone line, and then he said, “I love you” and I heard the phone hit something.

  5. Carolyn Johnson says:

    you write so beautifully and give so much in doing so. God bless!

    • Thank you for writing, Carolyn. I do so hope that my sharing helps someone else struggling with some of the same challenges. I also hope it motivates those with progressive illnesses to look fearlessly at the likely journey they are on and to be proactive about finding a solution if it is likely there will come a time when their loved ones will not be able to provide in-home care.

  6. Jan Vanek says:

    Pam, my heart breaks for what you’ve been through and continue to go through. My heart breaks for Jack, too. I also feel a deep regret that even as close as we were in Arkansas, I didn’t know a lot of what you’ve written here about the extent of Jack’s decline. You were too busy taking care of me to let me know how badly you also needing care. I’m sorry for that. But it also goes to show what kinds of person you are, and it’s a reminder to constantly work to take care of yourself. I love you. ❤️

    • Jan, I remember my wonderful years in Arkansas differently. As I recall, every road trip, conference, and coffee date with you, Ruthie, Patty, or Linda was monopolized by my venting over what was going on with Jack. At the time, of course, we did not know that his PTSD symptoms were being radically exacerbated by his progressive supranuclear palsy. Most of us went through some heavy personal changes during that time. I very much hope I was there for the sisterhood, as they were there for me. I love you, too, and miss all of you, more so now that I have time and energy to shuffle a step or two outside my full-time caregiver box.

  7. Beverly Litzinger says:

    Hey, Pam

    It’s Beverly here. WC asked me this morning if I had heard from you lately, and when I said I hadn’t, he asked me to send you a note to check on you.

    I’m not sure if you have met WC, but he is a pretty fine fellow. I have read him all your posts, and told him about you and Jack. I think he feels a kinship with Jack-perhaps because of his size, but it really doesn’t matter why, it’s just good (I think) that he feels it.

    So…how is it going? I know we are a million miles away, but we think of you often, and say prayers.

    Let us hear from you.

    Beverly

    479-799-7117

  8. bonkate says:

    Pam. I just read this. I am so sorry for what has transpired in your life since we last spoke. God bless you and Jack., Sending love and prayers.

    • Thank you, Bonnie. He’s finally settling in at the community living center. I was supposed to go down and see him last weekend, but he went a little off the rails and I decided to wait just a bit longer before going down. But he is participating in almost all the activities and doing much better. I have to wait now until this class I’m taking finishes before going down so that will be the first part of September, but I’m hoping he continues to make the place his home.
      Miss you, woman.

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