A Care Giver and Forgiveness

Writing blog pieces whose subject is an ongoing painful personal life circumstance, like I  and many of you readers are in, is sometimes difficult. All the low-hanging fruit of subjects are quickly used up and any writer realizes that an unending stream of emotional pain isn’t interesting, however relieving it might be to write. Personal experiences can be useful  for the greater meaning that might be extracted from them, a meaning that readers can carry away with them.

When something happens to me, to my wife, that evokes a great surge of emotion, I try to parse my reactions to understand what all this means to me and then I look for ways to ‘get into’ the subject, how I can put it down in some understandable form. Just as the director of a play will cause actors to assume a place on the stage when saying certain lines, to move in specific ways, even to speak in certain ways – all to maximize the impact and meaning – I try to write in a piece in a structure that is invisible to the reader but makes the words and meanings, what I mean to say, more understandable.
(As an aside, I want to point to an article about Broken-Heart Syndrome https://www.psychologytoday.com/blog/two-takes-depression/201102/broken-heart-syndrome , that feeling of profound sadness that many or most of us suffer. The first tip in dealing with this sadness is to not hold in your pain – and so that explains why I feel the need to write, I am trying to extinguish some of my feelings by writing about them, by using them, by letting each keystroke turn them from pain into meaning.)

This post were incited by a single incident last Friday evening and the follow-on events.
I understand that my wife is dying slowly, less slowly than some, but I have tried to accept each small declivity in the path and just go on from day to day.  The following paragraphs may seem excessive background but I need to describe the circumstances.

To reduce daily stress-inducing happenings, I make certain we have all the supplies and food my wife that needs and likes. Since she is eating less, I stuff her with high calorie treats she has come to like. We have a wonderful care giver who, for four hours every day, makes our life as good as it can be, taking care of her – and me.  I keep up with physical activities at the local gym early every morning before she awakes and I try to see one of my friends for a late lunch every week.
Even with all that, stark evidence of a new decline just hits me like a blanket of cold, dead air and I struggle to find a new normal, a new acceptable routine. I struggle hardest of all to not think about tomorrow and the tomorrows after that.
My wife has always been a quite modest person and her disease has exacerbated that. She changes and dresses in a very large walk-in closet where I’ve put a stool that she sits on and small handles on the dresser fronts so she can use them for balance. She has always resisted fiercely when I need to clean her up and even more so when the situation is past wet wipes and wash clothes and she must shower. I’ve tried all the accommodating tricks and techniques but, usually only superior strength will get her into the shower and keep her there long enough to get her even reasonably clean.
She is not at all shy about kicking me or battering me with her knees, fists and elbows but I’ve gotten good at fending off most blows at my face and just absorbing the rest. This last Friday was evidence of different person; while struggling she turned her head and bit me quite severely on my forearm, releasing me only when I pushed my palm into her nose. Aside from the copious bleeding, the rest of the shower went fairly typically, I kept her in the gentle spray and washed her off.   Only later I rinsed off the blood, doused the bites with peroxide and bandaged my arm when she was drying and dressing herself.
I have always been determined to keep her here at home as long as I could manage her and she was happy. She loves this house, wandering from room to room and looking out the windows at the woods. We spent the first three years of our marriage in San Francisco and then have lived right here every day since 1985. She won’t go outside and hadn’t left the house for about two years. Did this change in her behavior mean a greater level of dementia that would force some changes?

When she had a seizure last December, she fought in the ambulance all the way to the hospital and I spent the entire rest of the day and night trying to keep her from pulling out ivs and keep her in bed. After the seizure when she was first stabilized and in the ambulance, the head emt asked how she should be treated, what level of measures should be taken in event of a severe follow on event? We had an advanced directive but not the more detailed form so he suggested that I go over the orders for life sustaining treatment with our primary care provider.
Her nurse-practitioner was scheduled for a visit on Tuesday and, with the memory of this recent change and what it might signal, we sat down to go over this two page form. Life sustaining treatment – the meaning of that title hit me like a heavy blow to my chest. I have been a minor player in this drama for more than three years; I do the errands, make the meals, change the dirty clothes of the one principal actor. In actuality I could be replaced by anyone, perhaps with less interest in the play, but the real protagonists, my wife and her disease, could, would go on without me.
Maryland Orders for Life Sustaining Treatment.
Yet at this most crucial moment, this minor character has the final word; I get to draw the line in the sand over which the principal cannot step, I decide when my wife dies. Without all the extra frills, I am Laertes in Hamlet who, at a crucial moment, supplies the device which kills Hamlet.
I have been a non-believer for my entire life, going from indifference to agnosticism to atheism and then back to indifference again in the face of actual real life agony. I have two friends, both care givers, who are profoundly religious and I envy them for the bit of peace  and calm that their belief in the man in the sky gives them. Although I have asked the occasional question, because I think that their beliefs are not just casually put on, I would never try to test them with questions.
That is not my place to try to damage whatever they lean in in times of stress. In this time, in this place where I have a situation I cannot accept and forget, where I have decided on the timing of an unpleasant end has been determined, I envy them a bit.

There is a documentary in Italian about the Mauthausen-Gusen Concentration Camps in Austria built to house and exterminate large classes of prisoners (https://en.wikipedia.org/wiki/Mauthausen-Gusen_concentration_camp#Memorials)  When the camp was liberated,  soldiers found a large number of writings on the walls of the jail.
There, in German, was written “Wenn es einen Gott gibt muß er mich um Verzeihung bitten”; this statement has been translated and used ever since.
Translated Into English, the meaning is, ’If there is a God, he will have to ask my forgiveness.’

21 thoughts on “A Care Giver and Forgiveness”

  1. Lew, this is beautifully written and a valuable contribution to the available literature on caregiving. I will reread it, ponder it, cry a bit. I had to make this decision, although I did not allow myself to realize it fully at the time the decision was called for. My husband died in residential hospice on the fourth morning after he was admitted. I still believe it was the correct decision and the one he would have wanted me to make for him–and yet on some level I shall always wonder what if…..

  2. I also have this responsibility for my 94 year old dad. I don’t think of what my role will be as “deciding” anything about his death. That decision is way above my pay grade. I prefer to think of my role, as much as I am able, to arrange the details of his passing in the way he chose. Everyone should have an advanced directive in place so your next of kin doesn’t have to make those decisions without your input.

  3. Yes. After authorizing the cessation of life support for my father, then for my mother, I had the agonizing responsibility of authorizing the cessation of life support for my beloved husband. Wenn es einen Gott gibt muß er mich um Verzeihung bitten, indeed.

  4. Thanks to you who comment.
    I had some initial reservations about including the last paragraph because I don’t want to hurt believing people’s feeling but, since I ignore many comments about closely held belief systems in others’ posts, I believe that people can give me the same tolerance.

  5. Lew, believers are not immune to the emotions you are experiencing. We grapple with difficult decisions as much as anyone else. Twelve years ago, my healthy mother went in for an out-patient surgery, never came out of the hospital and died three months later from complications of a hospital acquired staph infection. I ended up on medication for a season to help me cope. I struggled with self imposed guilt because I was the one who pushed a testing procedure that went wrong and ultimately caused her death. The truth is that she would have died anyway. I had to ask myself for forgiveness in order to go on with life. Your last paragraph does not hurt my feelings, it simply exposes your pain and need for someone to blame. I get it. I chose to blame myself, and eventually chose to forgive myself. Today, I was faced with another kind of decision that I may end up feeling guilty about in the future. I was told that the first ever FTD drug trial will be released sometime this year and the neurologist we see has been asked to participate in the study. I feel that at this mid-stage of semantic dementia, neither my husband nor myself would want a “possible” permanent stop to the progression without a full cure (which of course is impossible). I told our neurologist that we would not be interested. I may have to ask myself for forgiveness again someday, but right now I’m giving myself permission to be human. The wonderful thing about being a believer is knowing that everything allowed in my life has a purpose because the man in charge loves me and understands I’m human.

  6. Thank you Lew, your writing helps.
    I’ve held this power before, twice, and I’m sure I can do it again in knowledge and peace. But every time I watch V sleep for hours/days on end I cry.
    For now she’s doing really well but has gone through terrible patches over the past 3 years. I dread her distress.

  7. I read your posts and feel you are giving your wife the very best. When the time comes for deciding whether to go on with sustaining treatments, I have no doubts you will choose what’s best once more, for your wife. And then, I hope you will be able to take care properly of yourself as you will have a lot to get over with. It is very scary to think that our loved one will leave us behind. It reminds me of an old popular French song called Si Dieu existe. The song goes like this (personal translation): if God existed, he wouldn’t let this be, but then, it’s no better for the neighbour. Regards,

  8. Lew, Your posts do not offend me as a believer because I respect your right as a human being to express yourself. You are struggling through this disease with your wife in much the same way that I struggle. I share many of your emotions, and maybe some that are unique to my situation.

    You find comfort and release by penning your thoughts for others to see. As a result, your writing is honest. It comes straight from your heart, fueled by your frustrations and an insatiable intellectual curiosity. I often feel your anguish and I can readily empathize with you. At times it seems that our lives are on parallel tracks, as our wives have similar rates of progression.

    I, too, write online for much the same reasons as you. Your blog gives you the discipline to write consistently. In my case, I write when I feel motivated and when I see a topic discussed to which I feel qualified to respond. For the most part, volunteering as an FTD advocate and support group facilitator helps me find emotional balance as I work alongside others.

    Living with someone who is dying from an incurable brain disease raises far more questions than answers. I don’t profess to know the answers, but I take comfort in knowing a God who sees far beyond any horizon that I can comprehend in this lifetime. I have always believed that you and I have more in common than our differences. It means much to me that you respect my views, and I treasure our friendship.

  9. The pain and the grief at watching another human deteriorate through this or any other physical or mental illness is not something I can put into words. I can only talk about each “dropping off” of an ability and learn quickly how to live with the change. I have learned over the years that loving that person for who they are and doing things with love for them is important. When my mum was ill I realised that sometimes I visited just to do a job for her and I forgot that she wanted independence and I was taking that away even more. She needed to talk to friends when she met them at the shop without me constantly hurrying her. She came to England on her own at 18 and trained to be a nurse. She was always strong and capable.Thankfully I realised that in time to step back and let her enjoy her life a bit more. She took me to church and I grew up as a catholic. I suppose that at the simplest level my faith is that God suffers along with us, that he sent his only son to explain to mankind what loving thy neighbour should mean and mankind rejected that and him and killed him. Whatever we think of that view at least we aware all here to care for each other and share as loving human beings.

  10. I want to add that the usual advanced directive gives rather general instructions and when one comes to make decisions, there are many different circumstances that one must consider. I think of myself as a rather stable person with a good amount of experience in difficult situations but, when it came to filling out the MOLST form (http://marylandmolst.org/pages/molst_form.htm) I needed help to work through the questions.
    I suggest that everyone should have this MOLST-like form available for EMTs or hospital staff.

  11. What ever your religious beliefs, you clearly believe in the sanctity of life. I think your moral dilemma over the end care of your wife shows you have not resolved your thoughts about what happens after death and how your later thoughts will affect you. We become caregivers, it becomes the definition of us. Without that, after so many years, who are we? We need to remember to define ourselves , daily, outside of this disease. I find this incredible hard to do.

    1. What ever your religious beliefs, you clearly believe in the sanctity of life. I think your moral dilemma over the end care of your wife shows you have not resolved your thoughts about what happens after death and how your later thoughts will affect you.

      I think you have inferred much too much about my beliefs from this short essay. I have no great insight about life, I am only concerned about my wife and myself. My dilemma is that I don’t want to lose her one second before I have to and yet I don’t want her to suffer.
      Whatever other people think about soul and life and persistence after death is irrelevant to me.

      1. I understand. How do we know the “right” time for them and for us? I question it all the time and my husband is not there yet. I don’t want to make the wrong decision.

        1. Casey,

          You cannot make a wrong decision because there are only poor choices to be made. I recently attended a dementia caregiver conference. One of the keynote speakers at this event was Daniel C. Potts, M.D., a neurologist with an insider’s understanding of what it means to be a caregiver, having witnessed his own Father’s struggles with dementia first hand. In his book, “A Pocket Guide for the Alzheimer’s Caregiver”, he states, /”…understand that in all likelihood, you will make decisions you said you would never make. [“I promised Mama I would never put her in a nursing home”] or [“I promised Daddy I would never lie to him”] or [“I promised my husband he could die at home”]. These and a thousand other promises were made when you were not in the real situation, faced with a small array of really poor choices. Do your best to keep your promises, but realize that you may be forced to make other choices for the good of everyone concerned, not just your loved one with Alzheimer’s disease.” /

          1. Thank you, Jerry. I am entering a new phase with Doug. Executive functioning is deteriorating quite fast. Also short term memory. I guess I am glad for affirmation that we have to just roll with the punches and not define ourselves by prior expectations. Casey

        2. Jerry said it much more fluently than I could. Right now, I couldn’t think of putting Jackie in a nursing home. I’m willing to have help in my home until circumstances change, but I can’t picture what would make me do that.

          1. I , also believe that i would never put doug in a nursing home. But I am not confident that circumstances might force the issue. It is my nightmare, but I know in my heart that I do not have control over his brain. I believe I would only do that if he became aggressive. In my support group this has happened to 2 gentle men.

          2. A nursing home is my last option, too. My preference would be for Debbie to die peacefully in her sleep while at home. I used to believe that I could never give my wife’s care over to someone else, especially a nursing home. However, I discovered that placing her is not as hard on me emotionally as I once thought. After taking advantage of hospice provided respite care 3X last year and once this year, I no longer hesitate to leave her at the facility. In fact, when I admitted her this past Monday so that I could leave town to attend my father’s funeral, she was pulling on me in the foyer wanting to go down the hall without waiting for a CNA to come and get her.

            Although I am over the emotional hurdle of a placement, one major obstacle that stands in the way of long term placement is the cost. Not being independently wealthy, nursing home care would quickly drain our savings account before I could qualify her to receive Medicaid. The spend down and five year look back aspect of the Medicaid application process is abhorrent to me. Yet, if nursing home care becomes my only option, I will do what it takes to have her placed in a good facility.

            There are basically two things that would quickly change my thinking in regard to nursing home placement: a fall resulting in a fracture or behaviors/medical attention that are beyond my ability to manage at home. Either way, as I said earlier, the choices are poor. Yet, we must do what is best in the moment, and learn to not feel guilty about our decisions as caregivers.

Leave a Reply

Your email address will not be published. Required fields are marked *