The Caregiver Catches a Glimpse of the End

It is interesting to me that I experience emotions in a sort of physical or physiologic manner. The way my body reacts even, some times, gets translated into the very word. For example, heart-break or heart broken – we feel terrible and sad and the hormones that the body creates causes tension and sensation in the chest and thus the heart is broken. When we are sad, food doesn’t taste as good, our appetite goes down and we feel the weight of the world – we are depressed.

There are many synonyms for sadness – unhappiness, sorrow, dejection, depression, misery, despondency, despair, desolation, wretchedness, gloom, gloominess, dolefulness, melancholy, mournfulness, woe, heartache, grief. And I can cycle through them until I find one whose undefinable nuances seem to fit how I feel.

Two weeks ago I hurt my back quite badly and, after a few days of quite debilitating pain had a consult with a neurosurgeon, an mri and an injection into my spine. The pain is down about 50% but I feel fragile and am quite concerned about doing more damage. Surgery is not possible so, until I feel better – if I do – my caregivers are in the house from Jackie’s wakening until she goes to sleep at night and I am quite careful about anything physical that I do.

The frightening part of this is that my sense of invulnerability is gone, I may not ever be able to be as active and engaged in sports as I was before and that is depressing. I minimize the strong analgesics I take but I still seem to float in a haze, whether that is depression or drugs I don’t know. Where before words come easily and I can understand what I am thinking and why, now I struggle through a fog and everything seems stilted.

Jackie is more quiet, she responds much less and her affect is much lower. My accident and her change have affected everything. The house – and I – are much quieter. I realize that the end of something seems to be coming and I can’t wait any longer to start to live a bit again so I have scheduled 5 days in New York in the last of April and a long Memorial Day weekend in San Francisco.

I’m afraid my wife is going now and there is nothing to do.

16 thoughts on “The Caregiver Catches a Glimpse of the End”

  1. “Heartfelt”- I’m nearly in tears Lew. I understand how those drugs feel as I’m in a similar boat. Glad you booked those trips. Much love to you from Down Under.

    1. Thanks, Linda. All the best to you and V.
      Some day you’ll have to tell me how you can walk around upside down all the time and not get dizzy.

  2. YOur descrition of how you feel, that is ‘Where before words come easily and I can understand what I am thinking and why, now I struggle through a fog and everything seems stilted is so familiar to me ‘ is so familiar to in middle stage of FTd bv and although mobile and semi independent, the amount of extra work needed is very overwhelming right now. I know it will settle and the external help has been very good, but I am strygling to get my work , as a consultant, done. I too feel worried about my state of mind, but have faun several apps for brief meditation and other little games to exercise the mind and take one into another place , very helpuf. I understand that you are in a differnt poition and feel for you.

    1. People who’ve never been in the situation don’t really understand how much the full-time responsibility and readiness intrudes into every second of one’s life. Years ago my oldest son called me and said that his daughter had some sort of flu and was ejecting disgusting materials at both ends.
      “And you’re telling me this why?”, I said.
      He replied that he was just calling to say thank you.

  3. Oh Lou I am so sorry. We all dread the inevitable end at some point, but we must view it as a welcome release for our ppa spouses from a life they would never have expected or wanted. Watching someone slowly slip away is so heart breaking, to use the phrase. Our 37 year old daughter spent most of last year watching her husband slowly slip away from cancer and having doctors say there was nothing they could do about anything. But it was even harder to watch that as this was a life not yet fully lived and a young son left behind. I like to think our spouses lived their lives well. Yes we wish there had been more, it’s so hard to watch the faculties eave them but also hope for their release. Your job is to stay as reasonably healthy as possible as inevitably you will have to go on. Taking a break , for your mental health might be the best medicine ever.

    1. Thanks, Nancy.
      It was hurting my back that led me to the realization that I needed to have a break, even a mini-break. I can’t manage and change my wife for a while and so care givers are here from 10 AM until 10 PM and, all of a sudden, I got a glimpse of how my life was Jackie-all-the-time.
      I don’t begrudge one second of it but I have only just so much time left and, wherever I can, I am sneaking in something fun.
      (Just to show how much I have rationalized these trips, the SF trip is first class both ways to take care of my back and pamper myself.)

  4. You are or will suffer from PTSD. Everyone will tell you to “take care of yourself” it is impossible. When in the final stretch I felt guilty that it would just end. What I didn’t know was the last stretch was the hardest. Aspiration and then pneumonia, then I tried to save her again and simply prolonged the inevitable.

  5. My heart breaks for you! Sometimes I wonder if I want to know how this is going to end, but then I try to be grateful that I can try to make every moment count, and still some days I am not nearly as patient as I would like to be. I am trying so hard and to realize that he is slipping away is breaking my heart. I hope that I can be as brave and compassionate as you are. You are an inspiration to me.

    1. This is behavior modification therapy and we are both the experimenters and the pigeons. I try to act calm and serene and not ruffled or upset and eventually, no matter how mentally disheveled I am, I actually am calm and serene in taking care of her.

    1. I don’t know how women can cry and still look sort of composed. I start to sniffle and snort and my face gets all red and wrinkled. This situation has pushed me close to the edge.
      Sometimes at night I wake and think I hear something from her room so I tiptoe to the door and peek through the gap until I see her breathe.
      I’m just not built for this.
      Taking care of our first child, every minor scratch was a cause for a full court antiseptic spray and watchful care. By the time the third one could run, our attitude was more like, ‘yeah, it might be broken. if it still hurts in a few days, remind me.’

  6. Words seem to flow from you quite well. I can truly relate to much of what you are going through. Your blog has helped prepare me for what is yet to come and in some instances how to deal in the here and now. I’ve read many of your older writings as well as what has been going on this year. You are an inspiring man who has much wisdom to inpart. Really should think of writing a book of your attitudes and the realities faced daily. Treat your body well and also the psyche. Get well so you are able to deal with the inevitable. Looking forward to your next post.

    1. Guess what, ninety percent of wisdom is just remembering all one’s mistakes and refusing to voice opinions on things you haven’t screwed up already yourself.
      Life is self-correcting.
      It’s like changing a diaper on a male baby; everyone quickly learns to cover the baby’s genitals when taking off the old cold diaper. And, if one forgets, the warm face wash reminds you.
      The most useful piece of wisdom I’ve learned lately is to buy every second of support one can afford.
      The other night I went out to dinner with visiting relatives and realized it was the first time I’d been out after dark in a couple of years (not counting a respite) and the first actual sit down meal in a restaurant for longer than that.
      Those two hours were wonderful.

  7. I also look forward to reading your posts. I have also planned a trip, with family in June. Although I try not to look too far ahead, I worry because my husband is having swallowing issues and so many posts state how quickly things can change. He is living in a nursing home, some days he looks so good, eats well and is very alert but the next day he barely opens his eyes and eats progressively slower. He already eats puréed food and thickened liquids. I am trying to stay positive and hope for the best. He doesn’t speak but is not losing weight and does not seem to be in pain. He has PPA with Parkinsonism.

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