Stress and the Caregiver

Psychologists use mice to test all sorts of theories about conditioning, learned behavior and stress. One specific one (that I can’t locate now) used mice in a cage with a metal grid floor. There were two doors, one marked with a circle and the other with a very distinct oval. If the mouse poked its head through the door with the circle, it received a food treat. If a mouse poked its head through the door with the oval, the mouse received painful shock through the metal grid floor.
The mice quickly learned to choose the door with the circle and avoid the one with the oval – and the subsequent painful shock.
After a good period of time to allow acclimatization to the two doors, the experimenters began to reduce the obviousness of the oval. With each reduction, they allowed the mice to learn the new situation. Eventually the oval’s character was reduced until the door with the oval could not be distinguished from the door with the circle.
Confronted with a situation where they couldn’t predict when they were going to be shocked, the mice chose not to try and instead died from stress and starvation.
We face that kind of situation.
We are in that situation where nothing we do has known, certain consequences and the consequences are always bad. When we adapt to a new normal, without thinking we relax, accepting that, no matter what we really know, the new normal will last and we can be comfortable for some time.
Then the change, which always comes, is even more disturbing that just the truth of the situation. We are thrown into disarray, not knowing how serious that change will be and knowing that we must search and adapt to a new ‘lower’ normal.
The signs and symptoms are there for me when this happens.
My chest is tight, I have not drawn any easy breath for 11 days, I sleep poorly and, except for sweets, food has no taste for me. I am tired and can’t seem to get anything accomplished.

From https://www.webmd.com/balance/stress-management/stress-symptoms-effects_of-stress-on-the-body#2

Emotional symptoms of stress include:
• Becoming easily agitated, frustrated, and moody
• Feeling overwhelmed, like you are losing control or need to take control
• Having difficulty relaxing and quieting your mind
• Feeling bad about yourself (low self-esteem), lonely, worthless, and depressed
• Avoiding others
Physical symptoms of stress include:
• Low energy
• Headaches
• Upset stomach, including diarrhea, constipation, and nausea
• Aches, pains, and tense muscles
• Chest pain and rapid heartbeat
• Insomnia
• Frequent colds and infections
• Loss of sexual desire and/or ability
• Nervousness and shaking, ringing in the ear, cold or sweaty hands and feet
• Dry mouth and difficulty swallowing
• Clenched jaw and grinding teeth
Cognitive symptoms of stress include:
• Constant worrying
• Racing thoughts
• Forgetfulness and disorganization
• Inability to focus
• Poor judgment
• Being pessimistic or seeing only the negative side
Behavioral symptoms of stress include:
• Changes in appetite — either not eating or eating too much
• Procrastinating and avoiding responsibilities
• Increased use of alcohol, drugs, or cigarettes
• Exhibiting more nervous behaviors, such as nail biting, fidgeting, and pacing

If there is one of these symptoms I don’t remember having, it is my memory at fault.
The die is cast for my wife; I need to be certain that the same disease doesn’t kill me also.


My wife has had a setback significant enough that she is now being watched by hospice and our beloved care giver has expanded her hours. Today was a strange time for me. Our care giver came in at 9, I went to play pickle ball but could not yet relax. I came home for a while, then went out to do an errand and had a long lunch by myself with no urgent need to rush home. She is actually in better more capable hands with our care giver than mine.
So I sat there looking out at the lake and hearing the burble of people conversing on either side of me.
There is some small relief at coming this close to the end; however long this stage lasts, a month a year, whatever,  I am comforted in knowing that there is not much past this, then she will be free and I can grieve and all the ambiguity will disappear.
I’m not certain that she recognizes me, she is passive and accepting of anyone who comes into our room. Ti and I will move her down into a hospital bed on the first floor and I will sleep next door in my office.
Perhaps this is, for a while, acceptance.


I always forget to write this line and so must go back. Any reader is welcome to share this post anywhere; actually I encourage readers to do so if they got something out of it.
I also encourage subscribing to this blog (top right) and leaving comments.
If you do any or all, thanks.
Lew

19 thoughts on “Stress and the Caregiver”

  1. Hospice was horrible for my wife. I felt like judge, jury and executioner. Watching her starve and dehydrate to death over 28 days was worse than any execution.

    1. Honestly Mick, I hope my wife dies quietly and painlessly here at home. If she was in pain, I have no idea how I would react.

  2. Painful, insightful, comforting, ( in that I feel another has been there) beautiful in your strength. Character. Humanness.
    You are an amazing person. Please do take care of yourself. – John A

    1. Thank you.
      I have found that the further away I am from people, the more amazing I can succeed at seeming. In person, I am old, homely and often cranky.
      Children and dogs like me. My oldest son says that’s because children don’t mind bad smells and dogs actually like them.

    1. Thank you, Rebekah. My job consists mostly of asking the care giver what to do and then sticking to her instructions.

  3. Yes. This. I feel like the mice and my oval is almost round. I know I will get through this but each new Day brings a new horror to face alone…and I would rather be alone.
    Kudos to you Lew for having the fortitude to share this. You are in my thoughts and prayers as we walk parallel paths toward the only certain thing we face.

  4. I have several reasons for writing these posts.
    The first rule of dealing with grief is letting the feelings out in some way
    Trying to make sense out of the feelings in some orderly manner helps me deal with them rather than just confronting a roiling ball of emotion.
    It makes me feel less alone in this when readers say that they join in these feelings.
    Last, but certainly not least, is that I get to create something out of this struggle and I feel good when I do and I get ‘strokes’ from the readers. There’s not a great deal of good experiences in this journey and feedback and praise for what I write is a good thing for me.

    1. Thank you for writing the truth so clearly. I need to read it, say it, write it myself. I had never thought why that was so. Thank you for articulating it so well.
      Linda

  5. Lew, you have discovered an essential truth about the needs of a caregiver. By penning your thoughts, you are able to express your innermost emotions. At the same time, your writing enables you to connect with others who are also undergoing the same stress cycles. Thank you for your willingness to be open and honest in your writing. Perhaps, one day, you can compile all of your writings into a book.

    1. Thanks, Jerry.
      I can’t imagine making these posts into a book but I’ll take your comment as a compliment.
      Compliments are too hard to get to turn any down for any reason.

  6. So glad I just found this post. Have been dealing with my spouse’s illness for over a year now and as it progresses I am watching him decline. This is the hardest. I do what I can each and every day and with love. We do have Hospice and a nurse comes once a week right now. I stay up much too late at night but it is the only time I can be by myself for awhile. I identify with much that has been written and the different definitions of stress. I cry a lot but then will stop and just do the next thing……seems to be working. The anticipatory grief is horrible but when this all comes to an end I will just be thrown into another level of which I can’t imagine. I try to keep things in the day! I waver with my faith but I do believe there must be something beyond all this that will sustain me. Thank you, Lew, for creating your post as it has helped me tremendously today.

    1. Nancy, I don’t know anything about where you live or what your connections in the community are but you are hurting yourself. Your husband’s path is out of your hands but you absolutely must do something for yourself so you aren’t equally a victim of his disease.
      A hospice visit isn’t for your benefit.
      Find some way to get a husband sitter for an afternoon or two each week – and do something fun or interesting, at least enjoyable.
      If you can manage it, hire someone or get your church to do something for you.
      Hospices or local Alzheimer’s Association may have volunteers who can give you a few hours of companionship or time away.
      I always felt like I was someone deserting my wife if I wasn’t home every minute but every knowledgeable person I came up against told me what I’m telling you – save yourself.
      You are the only person whose fate you can control.
      You don’t have to go out every night, hit the bars, find a boyfriend or two – just do

        something

      for yourself.
      I only really learned this when I had to have back surgery last year, complications kept me in the hospital for 5 or 6 days and I came close enough to dying that all my children came into town – and that was still my most restful time since late 2014.

  7. Thank you for your honesty. Through all of this, I believe honest with oneself, with others, and with the person in need of our care is absolutely essential “to be certain that the same disease doesn’t kill” the caregiver and others, also.

    1. Thanks for commenting, Linda.
      I’m not certain that it’s so much being honest with oneself as it is realizing that the only life that the care giver can save is the care giver’s.
      Then the care giver must deal with the feelings of guilt for not being ‘there’ all the time and the judgement of others who, to be perfectly honest, don’t know crap about what a care giver goes through.

  8. Lew, I’m not yet facing what you are, but have been through many times when I felt totally powerless to relieve V’s distress. I’ve needed to write, also, less about V’s current situation as time went on and more about her, why I love & respect her, what I’ve learnt, am learning.
    Like you, I often realize how I have let myself come way too close to becoming a “victim” of circumstances, how emotions took over my usually sensible, capable self, how desperately isolated I had become.
    I finally had 2 weeks at home alone recently, when V agreed to spend some time with her wonderful family. Since then I feel like I’ve regained some balance, some sense of myself.
    I’m not afraid of V’s dying, as I’ve been through that before with my late partner. I am afraid of her suffering for years. Every time she sleeps for a day or more I watch for coma and hypo-delirium, but I’m getting better at being quietly vigilent while using that time productively for me.
    V was diagnosed more than 5 years ago, though symptoms were there way before I met her 12 years ago (ah, the wisdom of hindsight😉). She is physically strong & athletic to start with, physically and emotionally sensitive, an artist who can no longer ply her craft. The trajectory of her illness hasn’t been linear, nor gradual. She’s now re-emerging from 3 years of absolutely crippling hell, thanks to a perfect balance of meds, her wonderful doctors who work together, my tenacity and most of all of all her own courage and will.
    She has come close to being hospitalized a couple of times.
    I admit that I and others close to her have found it difficult to deal with her occasional uncharacteristic anger, sarcasm, meltdowns, phobias, hallucinations, agitation and obsessiveness, though we understand why. It’s like a lid has been lifted, and all the words and observations that she can no longer write into songs come tumbling out in other ways.
    As long as she can beam that smile we’re ok.

  9. I love you Uncle! I am so glad that Auntie has had you for 35 years to care and love her! We are all here for you and I promise I will be on the next plane to help you or just to be there to listen. You are the best!

  10. This so describes the feelings i had in the month before my husbands heart transplant…he was fading fast and each day it was harder and harder to believe we were actually going to get “the call” in time… every time the phine rang id have a moment of paralysis…do i answer the phone? i didnt want to talk to anyone who wasnt from the hospital saying “we have a heart”… i was stressed and dying a little each day as i watched him suffer to get through another day… that was 16 yesrs ago…we did get the call, he did get a heart and hes alive and doing well…but a few years after the transplant i had a triple whammy if stress, menopause and a thyroid condition that left me with major depression and panic disorder… the stress is real and lingers for a very long time.

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