Running Away and Staying Close – a Care Giver’s Life

There are very few times in my life , perhaps only two, that I have been faced with terrifying, fear-inducing situations where I must take responsibility, where it is clearly mine and cannot be shared. The first was a great many years ago but I remember not only the circumstances but that deep well of fear and the almost overwhelming desire to run, to somehow get away.
I was in University of Pennsylvania Dental School and we were living in a small corner apartment on the third floor of a seedy apartment house on Baltimore Ave in Philadelphia, overlooking the street car tracks. We had just brought our first child home; my wife had had a difficult time and so I did all the getting up, walking around, etc.
Sometime in the middle of the first night, I was walking back and forth holding the baby, who was screaming inconsolably and I was desperate. Every few minutes a streetcar would grind past and re-energize the baby’s crying. I didn’t know what to do, I knew that I couldn’t handle this, my shirt was drenched with flop sweat, my insides were a ball of misery and all I wanted to do was to put the baby down and run. I was desperate.
What I don’t remember is how things got better. I guess the baby stopped crying and I fell asleep too. Things didn’t look as impossible in the morning and life went on but the memory of that overwhelming fear and the desire to run stayed with me.
The second time was quite recent, last weekend in fact. I was up early and at my desk. I could hear my wife’s footsteps as she came downstairs, unusually early for her. She peeked in my door, gave a finger wiggle and smile, then screeched and fell to the floor in a seizure. I turned her on her side, within seconds she had stopped seizing but continued with active noisy breathing. I called 911, unlocked the front door and stayed with her until the EMTs got her in the ambulance and left for the hospital.
The rest of Saturday after she woke was consumed with tests and waiting for some answer to appear but, nothing did. No UTI, no changes in her cat scan so the eventual unhappy conclusion was that this was only progress of her disease. That first evening in the hospital she became agitated so keeping her in bed, keeping her clothes and blankets on was a wrestling match. Eventually she fell deeply asleep and I went home around midnight.
Sunday, she slept a lot, wouldn’t eat but was quite sweet and pleasant and not agitated so I sat and talked to her and waited; there was nothing more to be gained by keeping her in the hospital so we went home about noon. The afternoon was relatively normal, it was clear she had lost some capabilities. She was quite weak, couldn’t walk well and seemed to not have much balance. She seemed to understand much less.
All of this was foreshadowing.
We had supper on trays in the sitting room, tv on to some un-threatening movie. She ate strangely, without a fork or spoon, just her fingers. Her speech was unintelligible as it had been for almost a year but still she seemed happy and not upset. I left to bring my tray into the kitchen and when I returned I found her leaning well over, almost on her side, her tray mostly upset – and yet she was still watching the screen, unaware that anything was wrong.
And my mind flashed back to that long moment of fear years before. Was this my future? Taking care of a large infant, feeding her, managing her, disrupting everything, discarding everything for the need to take care of her? And for some brief instant, I wanted nothing else in the world so much as to turn and run.
Well, clearly I didn’t but that’s not the real point of this story at all.
Getting past that fear, that desire to run has taught me so much.
For as relatively crappy our life is now compared to what it could have been if she were healthy,  I’m happy.
Like men always wonder if they will be brave enough when the time comes that bravery is needed, I have always wondered if, deep down, I really really loved my wife. Past all the day to day annoyances we put up with, past all the comforts of physical pleasures, past all the accommodations we make to not be alone, to have someone, do I really love her?
And, luckily for me, I do.
Yes, in some abstract way, I do miss some of what I’ve had to give up. I’m sorry that there are things we will not do together
but at the very bottom of things, I know that what I feel is real and that I will do gladly anything that has to be done to keep her comfortable and happy.
There is a good body of work that shows that constant exercise of a word, a phrase keeps that single portion of speech alive and understandable for patients with dementia.
So, to keep that phrase and thought alive, so it is the last words she will remember, a hundred times a day I lean over and say ‘I love you’ and inevitably she smiles back at me.

 

29 thoughts on “Running Away and Staying Close – a Care Giver’s Life”

  1. I wanted to thank all those who read this post. No sex, no abuse and it still got >200 reads in the first 3 hours. It seems to me that many men, including me, have a difficult time acknowledging the nurturing part of their own personality as it surfaces, perhaps because nurturing has been seen as ‘female’.
    I’m past worrying about how others see me or whether I’m macho enough.
    Taking care of my wife is the most important thing I’ve ever done and I’m proud to be doing it.
    In a blatant attempt to encourage comments on the actual post, I’m going to put this comment here.

    1. Enjoyed reading your post today. Glad to hear you didn’t run. Glad you chose to love and care for your wife. We all have that choice. I’m making the choice to stay because it just feels right for me. I was raised by my father so “yes”, men can be very nurturing, protective, and loving .

  2. You do a great job of expressing your feelings. Your wife is lucky to have such a loyal, loving man to care for her.

    1. Fern, please forgive my tardiness with th comment. Anyone making a comment must have two previous comments approved before they are posted automatically.
      Thanks for taking the time to comment.

      Lew

  3. Lew, I always wondered if Allan would have been able to be my caregiver if our situation was reversed. Knowing that he loved me as you love your wife I feel good knowing he would have. I know it was my love for Allan that helped me survive until the end. Keep up the good fight!

    1. Shirley,
      I am glad that it was me with the responsibility. Jackie has always been frail and managing me would have been to big a burden.
      Please forgive my tardiness with the comment. Anyone making a comment must have two previous comments approved before they are posted automatically.

      Thanks for commenting.

      Lew

  4. Beautiful, I often feel the same way while caring for my husband. We have had a beautiful and wonderful marriage, but I know with 100% certainty he would not have been brave enough to have taken care of me if the diagnosis had been mine!

  5. That was really a good article, Lew. There are many times that I too say I am going to run away but of course I never would. I took my vows seriously and I am here for the long haul. Thank you. We are all just human.

  6. I am doing for my Barbara as you are, I do the best I can daily. She was a care giver for her whole working life, a dynamo to our whole family always doing at least 3 things at the same time. We had foster kids, she worked in agencies caring for folks of all kinds, clients loved her. She has Alz, vascular temporal dimentia, and now a tumor in her bile duct. She was a champion of living life to all. Now she depends on me and like you I give it willingly every day. Like you I tell her every day I love you. Some days like you I wish I could run away. The life we live is for surely what our wives would would do for us. Mine would do this much better than I for sure but I take each day to do what can be done. I have a shell but she needs and deserves the best effort that I can do and I am proud of what I can accomplish most days. Your title really strikes the truth of we do. Thanks for listening to another guy just doing what I can.

  7. This made me cry. Such a beautiful story. I love my Husband so much. Your story reminded me of my Daddy taking care of Mother, with my help. I believe your Wife knows when she hears you say you love her!

  8. Such a wonderfully written story on this chapter of your life. You and your wife must have had a special marriage. I can feel the pain in your words…the fear of what is coming, can I handle it? Like the frog in the water as it slowly heats up, we just seem to adjust and amend, and create new ways of handling new problems. I think we are pretty darn flexible! Wishing you a peaceful journey as we stumble through this jungle of dementia.

  9. Lew, You are a true champion and an inspiration to many. What you have expressed here is a mirror of my feelings. So many times, I have wanted to escape, but the more I have those feelings, the more I am drawn to stay. In the early years of our marriage, Debbie was prone to tell me that I didn’t tell her that I love her often enough. I took the typical male stance of claiming that my actions showed my love without me having to say the words. Nowadays, I tell her that I love her as often as I can. In fact, I make a concerted effort to whisper in her ear anytime that I walk in her direction. And, I can honestly say that I feel closer to her today, despite her loss of language and abilities, than at any time in our 44+ years of marriage.

      1. We may differ in our beliefs, but our lives are running on parallel tracks. Even though we have never met in person, you have been very understanding. I appreciate your friendship, and your willingness to allow me to have a voice on your blog.

  10. I’m a 37 year old Christian woman caring for my mother and not my spouse. I know we are very different in a lot of ways Lew but your words resonate deeply. Thank you for putting them out for us to read. Your wife is lucky to have you.
    Jen

  11. Your article is so real & the truth.. I have wanted to run away also but I know I never will! Sometimes as I sit in the same room with George I feel guilty bc I don’t know how anxious or unhappy or even Frightened he is? I do wonder, does he realize his brain cells are dying? He would care for me if the situation was different… most of all I want to be honorable & know that I tried really hard to make him happy.

  12. Lew, you will never regret one single thing that you have done and are doing for her. I have been where you are. I understand the emotions that you are living. I believe with all my heart she knows and understands and shares the depth of your love. Because you have loved so deeply peace will come someday. Thank you for sharing your heart and your thoughts.

  13. Beautiful story. I cried at the end. Your wife is so fortunate to have you as she lives with this terrible disease. I hope you both have a wonderful holiday season.

  14. Running….. so many kinds of running. Obviously, for real. Suicide, both together and alone… hiding from reality and refusing to accept your daily reality and putting the burden on someone else. The thought of running has a kind of narcotic feel. You can try to convince yourself that the relief from pain is beneficial. I never sleep. I see 3 sleep specialists. It is my worst enemy and fuels the “ running “ thoughts. Ultimately, I could Never leave him. He has always been my rock and now I will be his. But in my dreams…. I run

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