Extra portions of grief for the care givers.

I am very well prepared for material problems.

Whenever I believe I see something unpleasant about to happen, I look for a potential solution. So, because Jackie had a difficult, essentially impossible time with our too high and steep front steps and wouldn’t go out of the house, I thought perhaps an easier set of steps would lure her into the world.
Now we have very lovely, new, quite expensive steps and walk; she went out once to look at them and hasn’t ventured out since.
I have stockpiled six months worth of bed pads, enough pull-ups to keep the entire subdivision dry, barrier ointment, deodorizing spray and lots of every possible thing I can think of.

All of this to try to convince myself that I am somehow taking care of her; as a man who has spent his life solving problems and being ready, this is my response. I see a problem and try to fix it.
In reality, nothing I’m doing is much more than cosmetic, I have no control over the progress of her invisible and persistent disease.
That hopelessness stares me in the face every time I see a new diminished behavior. I am always playing catch-up and never do.
We all know the Kubler-Ross stages of belief – denial, anger, bargaining, depression and acceptance and most of us realize that we don’t go through these in any order or just once.

In my experience, those of us with ambiguous grief, care givers of people with degenerative diseases experience several more ‘stages’.

Frustration and helplessness – we were successful at ‘fixing’ life’s calamities before, but we are totally unable to do anything now against this decay.

False Hope – the ambiguity of the diagnosis means that every time out LO shows a sign outside the ‘normal’ category we hope that the doctors were wrong, he or she has something else or is miraculously cured.

Bewilderment – where are we, when will we get there, how bumpy is the road, how steep are the declines? These are the first question care givers ask, they want to know all of this but there are no answers. You and your loved one are going down a mountain in deepest night; the length of the journey and even the very next step are unpredictable, unknowable; the only certain thing is that you are going down into the dark.

Envy – all around me, others go on with their lives, go out to dinner, go to the theater, travel. and we cannot, do not

Shame – sometimes, when things are really bad, when I end up shampooing carpets at midnight or trying unsuccessfully to get my loved one to do something that she obdurately refuses to do, I get angry at her and yell. Sometimes, when things are very, very bad, just for a moment I wish that this journey was over.

A moment later I am ashamed and become calm and loving again, willing to do whatever it takes, as long as it takes, just so that she is here.

I mention new posts on this blog only on my Facebook timeline, the PPA support group and the FTD Support group.
If you think this post is worth reading, please share it with others and in other closed groups for care givers.
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19 thoughts on “Extra portions of grief for the care givers.”

    1. You express it so well, 6 years in, I am still bewildered and in denial, evidenced in my latest adventure of taking him to Cozumel for the week, where we spent so many happy vacations scuba diving each year. Our first meal here started off with him knocking (accidentally) my Iced Margarita all over me. So much for a relaxing meal!

  1. Lew, so clear and true. It is daily torture and unending grief. Yes, there are a few moments sometimes – a laugh or a look – that can suspend us for a moment in a space outside of grief and exhaustion before the weight of it all comes crashing back down.

  2. I’m struggling like so many other care takers. I’m not able to define the pain I experience.
    Your added categories for grieving put some of those feelings into words. It’s very reassuring to have an explanations for what I am experiencing.
    Thank you

  3. Spot on Lew. I don’t personally feel bewilderment or false hope, but I’d add “rage” & “terror” to your list.
    My anger is rarely directed towards V, but at the paucity of government funded services and the abandonment by others.
    Terror is what I experienced a few years back, when V’s symptoms started galloping into uncontrollable and unpredictable panic attacks, before we had any support. I know that the trauma of that period hasn’t left me, and I fear that there’ll be times in the future when I’ll again feel totally overwhelmed and inadequate.

  4. Very well put. After falling off a precipice on January 4th and still not knowing how far back we can come I was touched by this post in so many ways. I hate living like this while I watch others having a happy, healthy life but I am more than willing. I hate that we have to come so very close to death to see that life without each other holds even more dismal predictions. I feel grief waiting around the corner waiting to pounce at any moment while I still carry the weight of responsibility like an iron bar across my shoulders. We live in a very different world than our peers. Thank you for making me feel less alone.

  5. Thank you for sharing. I can relate to much of it, except that I was used to rely on him for so much of what needed to be done. He truly was my hero. I especially appreciated the part where you described your occasional moments of frustration and anger then feeling shame. Unfortunately, I can relate to that part only too well. I’m so glad to know that I’m not alone in that. I get so disappointed in myself. Anyway, thanks again for sharing.

  6. To those readers who have posted comments, thank you so much for taking the time. It is difficult to express how much gratitude I feel for the support you people give me.
    I’ve stopped posting in a bunch of the closed groups where I posted before. I didn’t really feel like part of their community and I didn’t want to be a member there just to advertise my blog; that felt wrong.
    Consequently I depend on readers to share anything they like to their own FB stream or to other groups they are a part of.
    Thanks again.


  7. “Going down the mountain in the dark…” Perfectly said. Thank you for your writing, Lew. Because of you, I feel a little less alone on this dark journey.

  8. Lew, You have a great way of expressing feelings that we all share in this difficult journey. I am sure that your writing is, in itself, a comfort to you because it allows you to express yourself outside of the confines dictated by Jackie’s disease.

    Sometimes, I believe that I am permanently stuck in the “anger” stage. This morning, I overslept, and, then it took me two hours to get Debbie bathed and dressed for church. By that time, I realized that we would not make it in time for today’s service since we had not yet eaten breakfast. I left her in the bedroom, where she had busied herself rearranging her papers, while I fixed a hot breakfast for the two of us. Upon returning to the bedroom, I found her seated on the toilet with the lid down and her pants up. Realizing that she had soiled her pull-ups, I attempted to get her cleaned and changed. Of course, she resisted and I left the room in a rage. After regaining my composure, I returned to my gentler side and calmly helped her get cleaned up, but only after experiencing anger followed by shame. Anger because my plans were messed up and the hot breakfast was now cold. Shame because I know that it is pointless for me to get angry about a disease over which I have no control.

    Thanks for bringing clarity to the confusing emotions that fill us constantly throughout this horrific disease. In a strange way, it brings comfort to know that others share our sorrows.

    1. Jerry, It is bizarre that our paths seem to proceed in parallel so closely.
      After being woken early this morning (5), I ended up with lots and lots of laundry to do and, since I realized that the longer it sits the more difficult it is to wash clean, my compulsive nature REQUIRED me to be up and doing the wash. And of course I was irritated as hell.
      I’m trying to accept that I am human with lots of frailties but, as long as I don’t act on my baser instincts, no harm is done.
      A few days ago I was getting Jackie to get in the shower and somehow didn’t protect myself. She caught with a full arm swing, full hand slap on my cheekbone. It hurt some but I was mostly incredibly surprised and, in reaction, pulled back my arm and made a fist.
      Of course I didn’t hit her but just the fact that I reacted that way actually made me laugh at how primitive and reactive I am under a thin coating of ‘nice guy.’
      You’re a nice guy, Jerry.
      Nice guys will prevail.

  9. You are one of the strongest and most loving person I have ever met! You have always taken care of Jackie and the rest of the family before yourself. I am glad you have your writing and the support from others experiencing the same thing. I love you Uncle Lew you are and always have been my hero.

  10. Lew, Thank you for your words. I felt a sense of sharing which brought warm comfort. As yet I have not needed to deal with incontinence. I rode horses and mucked out the stables, I pick up dog poo from the garden, have changed nappies on sons and grandchildren, as a student nurse I emptied bedpans and never turned a hair, performed enemas etc. I cared for my Dad in the weeks before he died which included all personal physical cleaning. In spite of this faecal experience I am truly terrified I will not be able to cope when it is my beloved husband, not only physically but emotionally. The man I loved and have spent my life with was pristine in his appearance, not interested in fashion but always clean, smelt beautiful and was a joy to be close to. Did you feel the same dread before the disease gave you no choice? How do you over come the inevitable? – revulsion? I am so worried I will let him, and myself down, if I am unable to keep him clean. Normally I do not cross bridges until I come to them but in this instance preparation is necessary.

    1. Bronwen, maybe the first time or two, when I hadn’t prepared and everything turned messy. After that, it just became a routine to go through. It upset me more that my wife hated and fought it so much. It will never be a task that I’ll look forward to but I’m as gentle as I can be, do my best to comfort her.
      Sometimes she’s angry but sometimes she thanks me.
      Better me taking care of her than someone in a home that doesn’t love her the way I do.
      I did prepare. I put a small trash can with plastic liner in every bathroom along with wipes, extra pull-ups, spray deodorant and a box of rubber gloves.
      So far, it is going OK.
      No fun, but she’d do it for me.

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