The Gaping Wound

Bleeding heart flowers

My wife, who is my caree, and I were sharing the other day the gaping wounds we feel in our hearts from our lives taking a 360 degree turn  from the life we had before she became severely disabled from four back surgeries; critical illness neuropathy; and a Parkinsonian Movement Disorder.

We concluded that we need to relate to each other in new ways that heal the pain; fill the emptiness; and not let what’s happened overcome us.

She wondered if anyone else on our site is experiencing anything like this.  I said, “In all likelihood.”

So we begin our journey of learning how we can relate to one another in healthy, enriching ways in which we respect each others needs, wants, etc.  We have been  talking more openly of the myriad feeling of the issues we have faced: Me having to make the horrible choice of having her placed in a nursing home; facing the physical changes that have occurred for her psychologically/emotionally;  my still being on disability; me having to live with family; getting our house ready for foreclosure; fears about the future; and a thousand other topics.

We laughed for a moment as we talked about all the things we have been through in our lives personally and together.  We thought of writing a book called “And Then…,” a humorous look at the constant challenges we face one after another in life and how we face them.  I want to start working it with her.

On Thanksgiving,  I picked up dinner  from our favorite restaurant. A funny Thanksgiving story is that I went to put my wife’s cheesecake in the patient refrigerator/nutrition room with the combination an aide gave me, only to wind up getting locked in because the lock mechanism went south. I was locked in for an hour. I stayed calm as a cucumber. I had my cell phone on me so I could call the nursing station, thank God. I called my wife’s cell and told her how I was locked in the nutrition room. She was concerned and then we both laughed. Finally the director came with some tools and I was able to dismantle the lock from within. Cool, I thought, proud as a peacock. So that’s my funny story.

Would love to hear People’s experiences of what I will call the “gaping wound of the heart” phenomenon.

Got to go. Thanks for reading….Bob

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Avatar of Bob

About Bob

I am 61 years of age. I am a caregiver to my wife, age 63, who is bed-bound in a long term care facility. She is paraplegic from severe neuropathy from her chest down to her feet. She also has muscle atrophy and has been diagnosed with Parkinsonism. She had 4 back surgeries between August of 2010 and December of 2011 initially because of burning, and numbness in her legs which turned into paralysis of her two legs. The events that took place from her first surgery to now have resulted in the loss of life as we knew it, the loss of our home and so many other losses. It has all been heart-breaking. I wound up on disability from overwhelming stress and depression in May 2012 and have not yet been able to return to work. Both my wife and I are social workers by profession for 40 years, and 38 years respectively. We have always been very close. We have had a lot of ups and downs over the past 2 1/2 years as we struggle to find our new normal. Caregiving.com has become like a new home for me and has gotten me through some extremely difficult times and I imagine will continue to do so. Denise Brown, founder/creator of Caregiving.com, and its members have created a sacred space where all of us can share the wide gamut of experiences, emotions, etc. that comprise our caregiving experience. Caregiving.com is also an oasis of support, education, wisdom, tools, comfort and more,

12 thoughts on “The Gaping Wound

  1. Avatar of ejourneysejourneys

    Hi, Bob — It’s good to see you here. Bless you and your wife for this new level of sharing and intimacy in the midst of so much. My partner has suppressed her emotions for most of her life, but over the past year or so we’ve been delving into both hers and mine. I’ve been learning to share my own needs with her. For my partner, the gaping wound aspects relate to her memories of abuse and to coming to grips with her MS. Her delusions are such that I have to be careful in how I express my own emotions.

    I love your Thanksgiving story — thank goodness for your cell phone!

    Reply
  2. Avatar of DeniseDenise

    Bob, first, I love your Thanksgiving story. Oh, my. It’s easy to laugh when you’ve already shared so many tears.

    I think blame can contribute to the gaping wound. Your wife could blame you, you could blame yourself, you both can blame doctors, lifestyle choices. Once we play the blame game, there’s no end to who we can blame.

    I wonder how you both have worked through blame? Or, do you feel like it’s still a process for both of you?

    Glad you’re okay–we’re all glad to see you. :)

    Reply
  3. Avatar of BobBob Post author

    Thank you ejourneys. I was glad I could laugh. Having worked with Adults who have been traumatized from abuse it can be so easy to shut down even though they may want to, deep down, have a voice for what has happened. It can be really tough to communicate because of trust issues; resurrecting the horror of the trauma; etc as I experienced with many of the clients I worked with. But with empathy and the gift of presence, miracles can begin to happen. Take care of yourself for what you may know as vicarious traumatization which can happen in our relationships with those with a history of trauma. Sending hugs and prayers your way.

    I’m glad you liked my Thanks giving story ejourneys and Denise. Denise, I found it very interesting that the gaping wound can be about blame. I think that blame is an undercurrent in this gaping wound we both experience and probably more than I can fathom right now. I believe that my wife blames me for being in a nursing home. I blame her for not understanding why I had to make that decsion. I think we blame the surgeon who did three of fours surgeries for her condition. My wife blames me for the way I managed the foreclosure of my mother-in-laws house by having an estate sale that did not go well. I am in the midst of trying to do all the owrk to get our house ready to possibly foreclose on our house. She is angry about that. She is angry she is not home. I blame myself and feel a lot of guilt for having to have her placed in a nursing home. I blame myself for getting sick and on disability. She blames me for not working. I feel even guiltier though I’m still burned out with all I’m handling by myself. I’m angry that she doesn’t understand. I’m angry because I’m so powerless about a lot of things. I would love for her to be home but I would not be able to care for her myself; have a great deal of financial stress. Emotionally, I feel pretty shot to the point that I worry about my physical and emotional well-being. The depression seems to be worsening. I pray; go for walks; suit up each day to manage as many tasksas I can. I do the best I can. There is a lot of pain; anger; grief; loss; depression; anxiety for both of us. I’m going to talk to the psychiatrist I see for meds and theraoy about seeing someone on a weekly basis to deal with my issues. I’m also going to try finding a face to face support group.Yes, think there is quite a bit of blame below the surface for both of us. Thanks you so much for pointing this out to me. Just want to say I’m often feeling very lost in all I’m contending with. Thanks for giving us a voice Denise……Sincerely, Bob

    Reply
  4. Avatar of JoJo

    Bob,

    I’ve heard many describe grief in terms of a hole in their hearts, but I’ll never forget when I first heard that description… it was from my daughter describing how she felt after the death of my wife/her mother.

    You’ve described well “the gaping wounds we feel in our hearts from our lives taking a 360 degree turn from the life we had before.”

    Your conclusion is spot on that we “need to relate to each other in new ways that heal the pain; fill the emptiness; and not let what’s happened overcome us.”

    Note to self: always take a cellphone with me when I go on cheesecake runs.

    Reply
  5. Avatar of BobBob Post author

    Jo, Thank you so much for your response. Yes the gaping wound feels like a bottomless hole with some moments of normalcy and other times when my heart feels so raw. I’m so sad to hear you lost your wife and your daughter, her mom. I cannot imagine. I thank you for what you said about my description of the wound and our lives becoming totaly ripped apart. God bless you and your daughter.

    Reply
  6. Avatar of Bette

    Hi Bob,
    I think one very positive thing to keep in mind is how you and your wife talk through the emotions that come. The hole you describe is not an easy one to understand. It has more power than we realize – as loss or emptiness does. The healing, comes in the talking which you both do so very well.

    I’m so so sorry about your home and the challenges that can take our breath away. I hope for easy breathing this week-end and am so grateful you share here with us.

    Please take care Bob. Thinking of you both.

    Reply
  7. Avatar of BobBob Post author

    Thank you so much Bette. Yes, the hole is quite powerful. It waxes and wanes also. Adele and I don’t always agree, but we do put it on the table more now. We rarely held back from each other when she was well. But with our world having turned upside down and facing the challenges ahead of us, everything is so emotionally charged to the nth degree. However, we are learning to take a break when things get rough at the edges. Bless you Bette and thanks again…..Bob

    Reply
  8. Avatar of laura

    I’m so sorry for all you are both going through. To be honest it sounds like you’re living all my biggest fears. I admire you for trying to move forward in a positive way. I never realized until your story that i think we are comparitively lucky to not have blame as an element of our relationship. Or as i joke ‘boyfriend and i get along great because we are both to lazy to fight’. Maybe because when we met i already knew he had ms ( although he was still able to work then). I imagine it must be more difficult for people who had a ‘normal’ life together previously. And i laughed about getting locked in…. And the comment above ( sorry trying to scroll back up to see a name is tough on my phone) about always carrying a phone now on a dessert run!

    Reply
  9. Avatar of BobBob Post author

    Thank you very much Laura. I appreciate your feedback!!! I’m sure you will agree Laura that Care-givng can be very challenging no matter what the circumstances. Glad you liked my Thanksgiving story. It added levity for both my wife and I as things have been tough since Sandy and other challenges. Yeah…don’t leave home without your cell-phone….Haa- hhhhahhhhh

    Reply

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