The Caregiver Learns a New Lesson

The other day one of my children asked why I write a blog about what seems to be, what must be common knowledge – being a caregiver. As I thought more about it I realized that I wrote, not for anyone else, but for me. There is so much that is not understandable in my life, except for vague generalities, that writing a blog helps me to sort out my feelings. It isn’t that I have answers or that I know more about my future, my wife’s illness or the illness; writing is a way to hold the emotions at a bit of a distance, to examine them and hope that, instead of an tangled messy skein of feelings that tangle around my awake hours and invade my sleep, the emotions become more orderly and less disruptive. I want to be able to see those feelings at some remove and manage them a little.

I started writing from a sense of loss. All my remembered life, I had been trying to get a sense of self, a sense of being someone.
Seemingly, in retrospect, I had achieved worthwhile goals my entire life, going to a fine undergraduate college, then professional school, eventually more graduate schools and degrees. It is ironic that achieving goals never made me feel fulfilled until, after a successful career (unfortunately not financially), I finally achieved some sort of peace and calm when I elevated my hobby of photography to a real force in my life.

I traveled to out of the way places, took pictures and met people and – for the first time in my life I was happy with myself.
I was creating and totally calm with what I was doing.
Of course, my wife’s illness took all that away.

My wife suffered with immune problems from early in our marriage and, as her decreasing strength made working regular hours outside the home impossible, became the eponymous homemaker. She loved being in charge, loved cooking, loved shopping and taking care of everything within our home’s walls.

The increasing impact of her dementia made even this impossible and while Nature laughed, I became responsible for everything, most of which I knew nothing about. In a spasm of duty and responsibility I dropped everything to be a caregiver.
Everything that I enjoyed, movies, plays, eating out at strange restaurants, traveling to take pictures, all of that gone or pushed away.
Everything that I was, gone.

Man, was I angry, but with no outlet for the anger. I couldn’t be angry at my wife, it’s not her fault. I felt guilty for being angry – and that guilt made me double down on being the greatest caregiver in the world.
I learned to shop and I learned to cook. Cooking anything fancy was a waste of time, she liked simple foods, perhaps that she remembered.

I had tried hiring caregivers. They paid way too much attention to my wife, following her from room to room and trying to engage her and she hated it – and them and eventually wouldn’t allow them in the house.
So there I was, stuck cooking basic simple meals, doing the dishes and the laundry and every other damn thing and worrying about the endless future.
So I wrote and wrote and tried to use that writing to untangle the tangle of anger and loneliness and depression.

I was lucky in that I had two friends that persisted in keeping contact and, as much as I appreciated every minute of their company, it was clear that they were still living a life and I was not. My children, who live far away, called and visited when they could, but when I hung up the phone, I was alone with my wife again.
And so I wrote, I thought, to push away loneliness, not dispel it but just to push it away so I didn’t have to deal with it.

After a couple of years of this emptied life, another acquaintance also a caregiver for someone with dementia, met me for coffee, listened to me complaining a bit then slapped me smartly around the face (rhetorically of course) and told me I was doing most of this to myself.
‘Get out’ she said, ‘make a life. Do whatever you have to do to enjoy life a bit.’
And I listened.

So I found a housekeeper for the afternoons who had experience as a caregiver. She’s a smart, nice woman and Jackie took to her and vice versa. Then I swapped the early morning work-out sessions at the gym for the intense interactions of pickle ball three mornings a week and thought, considering the situation, I had everything under control.

But, even with this activity I felt empty; even though I had much more of a life, something was still driving me to this continuing self-examination and to writing as a way to figuring myself out.
What was I missing?
I was looking at myself and not understanding.

The other morning I was talking on the phone with my oldest friend. In a odd, unpleasant coincidence his wife is going through the first stages of some sort of illness also and I was telling him my experiences and how I dealt with all of it.
He listened and asked me how I was dealing with, all of a sudden, not being ‘someone’, just being the person who did the chores, watched over the sick person, totally dissolved in that role.

A light went on.
Even being as egocentric as I am, I have never looked at my self , at my situation in that way.
As the classic driven type A person, all my life I had fought to be something, someone in everything. Get that promotion, be that speaker, and so on. In a succession of very small ponds, I had made it to be a sizable fish.
For better or worse, that persona was gone, I didn’t exist anywhere except as Jackie’s caregiver.

So, at one level I have reconciled to the loss of the external things and really wanted to be the best I could be at taking care of my wife, at another level the loss of sense of self is devastating.
So now I know what I have to do.

At the core of Buddhism are the Four Noble Truths. The First Truth is that life is inescapably full of things that cause stress and suffering yet are only temporary. The Second Noble Truth is that the cause of the stress is not the things themselves but our attachment to them.

We continually search for something outside ourselves to make us happy. But no matter how successful we are, we never remain satisfied. The Second Truth is not telling us that we must give up everything we love to find happiness. The real issue here is more subtle—it’s attachment to what we desire that gets us into trouble.
The Buddha taught that this thirst grows from ignorance of the self. We go through life grabbing one thing after another to get a sense of security about ourselves. We attach not only to physical things but also to ideas and opinions about ourselves and the world around us.
Then we grow frustrated when the world doesn’t behave the way we think it should and our lives don’t conform to our expectations.

https://www.thoughtco.com/the-four-noble-truths-450095

My goal is to understand this.
To give up expectations, to live day to day emotionally.
To wring out every bit of joy from each day and, at the end of the day, discard the painful things.

35 thoughts on “The Caregiver Learns a New Lesson”

  1. Very thought-provoking. Enjoy reading. For me it was to go from spouse to housekeeper, nurse…….little to no interest or emotion. Very lonely at times.

    1. Yes, I sometimes really do miss what I had before.
      But, more and more it is not that visceral longing for a life past but just more of a thought that is not so painful.

  2. Lew, I very much enjoyed your blog and I can relate more than you know. All of my adult life I have pushed myself to be the best at everything I did. I am still struggling with the fact that everything that was my identity is gone now. It’s tough but I’m working on accepting it.

    1. Sometimes it is just hard to reconcile who and what I was with what I am now.
      However, what I learned about total commitment to a task stands me in good stead now. (but I still am a terrible cook)

  3. Yep. What I’ve found works for me is to purposely, intentionally give thanks every morning that we both woke up to find joy in the day and to share love with one another and with others we may come in contact with. Most days are pretty much the same and that’s okay.

  4. hi, i love your writing, i take care of my husband, who has vascular dementia, it s got me thinking. thank you.

  5. I am a woman and the daughter of someone I care for with FTD, yet much of this resonates with me as well. Becoming a caregiver does challenge your self-concept and search for meaning in life. Great read, thanks.

  6. Lew —

    My wife was unexpectedly diagnosed with stage-IV never-smoker’s lung cancer in August of 2015, and hospitalized almost immediately afterwards. She spent four weeks there, and then came home where I served as her caregiver for the next 8 months, until she died.

    For those 8 months, I felt indescribably isolated from the world. I had no friends who had been in the position of caring for a terminally ill spouse, and the entire time I felt woefully unprepared for the role. But I gladly assumed it, since it was, after all, the woman I love, and I knew no one could care as much about her well-being as I.

    From the minute that she was (finally accurately) diagnosed onward, I was in a state of pre-grieving. This was particularly difficult because I needed to appear to always be optimistic and positive about her chances of beating the disease. (She did not want to know what the odds of her survival were, but I knew that they were about 1%.) That divided mind was a very difficult balancing act on top of the caregiving, the grief, and all of the mundane parts of life that I had to deal with (finances, shopping, etc.) It was also tremendously stressful because I knew that one mistake on my part could cost her her life. And at the end of it all — after all of my efforts and care — what was the result? It could easily be characterized as a failure, since the patient died. The net effect of all of these factors left me with what my therapist describes as classic PTSD. Fifteen months out, I’m just beginning to emerge from under its weight.

    That’s a long-winded way of saying that I know something of what you’re dealing with, and you have my full respect and empathy. What you’re doing is, I would argue, the hardest task there is. And you seem to be doing it with grace, dignity and thoroughness.

  7. Thanks, Lew. You expressed what I often feel. My husband is in the early stages of Alzheimer’s. I never know what each day will be like – or hour! Will he be angry and take it out on me, or relatively calm and pleasant. I cannot plan anything, rarely see friends, etc. Giving up his car and driving is part of the problem, then the disease brings out the worse parts of his personality in full force! This is not what I thought retirement would be. Nice to know I am not alone.

  8. Thank you Lew for your thoughts and perspective. My sister, was diagnosed at 69 & I became her caretaker. I retired that year, as a clinical social worker, only to find myself in the most challenging social work role of my entire career, that being said, I identify with your feelings of loneliness, anger and that truly ugly emotion of all ” guilt”. I feel guilty for driving where I want to go, sis loved to drive and was always on the go. Guilt finds me when I dine in a restaurant, sis loved to eat out. Even the things I detest doing, such as shopping, are over ridden with guilt. Sis loved to shop. I have tried to hang onto moments of joy, but find them happening sporadically and infrequently. I continue with my life, but it is forever changed as a caregiver. Thank you for putting into words, what so many feel abd experience along this horrific journey. I find comfort in your thoughts and feelings and I feel a little less alone.

    1. Cathy, I tried to say something intelligent to add to what you said but failed.
      I understand. We are all in this leaky boat together.
      Thanks for the comment.

      Lew

  9. Hi Lew,
    Thank you for sharing this. I resonate with what you shared and agree with your thoughts. I also try to let go of what I cannot control (my husband’s FTD) and move as gently and peacefully through suffering (when it happens) as I can. Blessings to you.
    Cindy

    1. “I …try to move as gently and peacefully through suffering as I can.”

      A truly wonderful way of saying the un-sayable.

    1. Patty, thanks for this comment. It is especially meaningful because, as a totally amateur writer, I have no objective view of whether what I am trying to say comes across.

      1. No need to worry about that, just keep writing, and we’ll keep reading! You should consider writing a book. Compile your blogs, responses, replies (even the thoughts you might have about someone’s reply you don’t care for). People who are beginning this journey of caregiving or foresee it in their near future, will find it invaluable.

        Keep blogging/writing,

        1. I appreciate the suggestion.
          I don’t like to either give advice or hold myself out as any kind of example.
          My situation, like everyone else’s, is unique in that each of us has have different issues that influence us and how we can respond.

          1. One can appreciate that. I’m not one to give advice, but i can share my experiences hoping that they assist others in what might be options or another use point.
            I am a special ed teacher and have been considering doing just as I spoke of when I retire which hopefully is within the next two to three years. I just know that the two books that I have read since my daughters catastrophic accident, has helped me beyond measure and I use them as reference books to let myself know I am not alone out here as her caregiver, as her only parent, her only support, and we are novices in this new normal. I have even met with one of the authors that wrote about his journey since his accident and everything that it has encompassed and that also was quite revealing as to what I need to give myself a heads up for.
            He neither gave advice or suggested he just shared his experiences and what he on a daily basis requires.
            Be sure to take care of yourself, do an activity as often as you can that you enjoy.

  10. I am three years into the FTD diagnosis for my wife. My son and I are her caregivers. What you have written is so close to our reality. I too have written thoughts and notes for me. I have forgotten way too much about us. What I write seems so self serving yet my only therapy. I really enjoyed reading this piece. Thanks

    1. Raymond, thanks for writing your comment. I was struck by your use of ‘self-serving’; I understand that feeling well. When I started writing, I did it to help myself only; clearly I could do nothing much to help my wife in the long run. But I began to realize that this writing actually seemed to help me to stay calm, to deal with things in a more measured way and concentrate on my wife’s needs rather than reacting about how my life had been distorted.
      Yes, life sometimes sucks but it’s what we have.
      Best wishes to you and your son.

      Lew

  11. Lew,
    I admire and am always amazing at the level of thought that seems to come natural to you. Your revelation about how guilt propelled you to become the best caregiver is very insightful. I don’t think I have ever allowed myself to trace back why I work so hard to provide an outlet for others dealing with this dreaded disease. We all deal with emotions in our own way, but you have me wondering if I am just in denial about being angry and feeling guilty about it also. At least we know that we aren’t alone in our struggles to make sense of it all. Thank you for giving voice to our pain.

    1. Tara,
      Thank you for that note and the compliment. I guess you thought I was just a pretty face. :}
      Interestingly, I think that my effort in self-awareness in photography has given me a few tools that others might yet have to develop.
      To understand why I like/dislike a picture which is usually a visceral response, I have learned to parse and understand my responses and tie them to what is right and wrong, imo, about the picture I see.
      I know that sounds like BS but there are equivalent skills. A good cook will taste something and be able to understand what part of the ingedients or process is lacking when something doesn’t taste just right. The same skills apply in judging how clothes ‘look’ on someone.
      In the same manner, I can usually trace the reasons behind my feelings or behaviors myself without the intervening therapist.
      That doesn’t mean I necessarily behave any better just that, when I act like a dolt, I can figure out why.

      Best wishes, Lew

  12. Thank you Lew. I love your writing and your photography. Both speak to me- your craft is fine-tuned and subtle.

    A long way since those first angry posts, which is when I knew I like you “mate”!

    I too have been through the emotional rollercoaster, and I’ve come close to collapsing, for similar reasons to those that led you to feel emptied out. It was relatively easy for me to ease into V’s world, once I realized I had to slow right down and be “in the moment”. But that didn’t resolve my frustration, disappointment and occasional anger that nothing seemed to be in my control, nothing could be planned. I, the seasoned public servant and consultant, found myself constantly late for meetings/appointments or, worse, giving apologies at the last minute due to a domestic crisis. My social life became non-existent, soon after my work life had to end. My healthy lifestyle died. Everything depended on how V was that day, that hour. There was no-one supporting us, then….I burnt out gradually over 4 years from continuing adrenal overload.

    I channeled my personal anger into political advocacy, which kept part of me alive, if only as an “armchair activist”. ( Thank god for I.T.) I went back to my academic roots (cognitive psychology & educational sciences) and started learning all I could about dementia and PPA in particular. While I still had little conversation or personal interactions in my life I could at least use my brain and networking experience for some purpose (Like you, I’m a type A “achiever”).

    So here we are, 6 years since the sky fell in with the announcement of V’s likely YOD. We’re well enough, still determined to do things our way and no longer feeling alone with those aspirations. Our “village” has expanded, we have new friends around the world, old friends have popped up via Google & YouTube as V started showing her life to others.

    I’m realizing that I have something to say too, about our experiences through the labyrinth of the health, aged care and disability sectors which have been shifting around major reforms for several years in Australia. I don’t want to give up on “me” or my skills: I’m back doing policy analysis, writing a few pieces, talking at events.

    Most of all V and I have learnt to be separate again, to ease up on co-dependency, to reassert ourselves as individuals in our own ways. She’s still the performer, the artist, the sweet clown with a will of iron. I’m bigger-hearted, no longer “driven” but focused…and I no longer despise myself for my inadequacies.

    All because I made it through by the skin of my teeth to the Second Noble Truth. Merci mon ami.

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