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Thursday, February 8, 2018

Your Dying Spouse 443 - Barbara on Caregiver Guilt {FMF}

More from Barbara...and here's a picture of her, with her BFF, Bray...



Sick caregiver, guilt is part of the duty.

It's been a difficult week.   We live on 1 1/3 acres and a corner lot. One of our neighbors is a prominent employee of the police department with a military background.   I say this because he's typically doesn't get alarmed about much. But Sunday Andrew collapsed at the drive-in gate.   Our neighbor was on the roof and heard moaning and immediately ran to Andrew's aid.  He was not prepared for Andrew bring up blood & his legs were paralyzed, a daily occurrence we've become accustomed.  (With the high levels of pain,  the nervous system shuts down stops function to non-vital body parts and places the energy to vital body function,  this includes certain brain function.) The neighbor called 911 and got immediate response because of his position.

I was grocery shopping and received a call from the wife,  luckily I was on my way and about 6 miles to the house. Once I arrived,  education of all present commenced.   The neighbor left everything in my capable hands. Thankfully,  I have POA and DNR (power of attorney and do not resuscitate) for situations like this, of course I had to prove it. EMTs helped get Andrew into my truck using a sheet as a sling.  Through the processes Andrew kept passing out for 1-2 minutes,  something I'm accustomed.   Each time I had to win his confidence to know he was safe (PTSD).   I finalized all the necessary paperwork for the EMTs liability,  while they tried to thoughtfully console me.   At this point,  actually it is my job to console them,  they feel helpless since there is nothing they can do.   Transporting Andrew will kill him or leave his body in a state of shock that once at the hospital the health professionals would try to counteract.   Those efforts would only increase Andrew's issues and potentially he would not leave the hospital alive or in a state that I,  his only caregiver, could not handle.

So after 3 hours Andrew could slowly walk on his own with a cane, minimally helping with dog duties.  

The remainder of the week, I had to work long hours arrive home an hour before bedtime duties for Andrew.  Needlessly say,  I did not eat as healthy as my body is accustomed.  So now I have the upper respiratory virus again.  Needless to say caregiving had not been my forte,  and thankfully must things Andrew can still do on his own.

No, the guilt of not caring for his needs never goes away, ever. And Andrew's preferred living conditions makes it impossible for extended family and friends to assist. So how do I now keep guilt at a minimum?   Honestly years & years of practice and I've grieved so much all the way through these almost 16 years that part of me is numb.

I've learned how King David felt for seven days (2 Samuel 12:16-23), except mine has been extended and a harsher reality has been endured. And of course,  why Andrew's condition exists is not an action of our own but another (a botched surgery).   Nonetheless,  the grief have occurred mostly, and deliberate action of survival moves each day to the next. That's not to say,  I still get stressed,  mentally overwhelmed,  and physically exhausted. I do!

Arriving to this point is a gradual process, emotionally painful process, and a faith trying process. The key,  is to allow the depth of grief occur,  don't let others, even health care providers, tell you to buck it up or stop being a martyr.   The loss is real and the weight of duty immense.   In your grief,  you have to ask God all the doubt questions on your heart and mind,  the key is to ask and NOT  dwell.   If you must dwell,  then dwell in the shadow of His Wings and be ministered to by His angels of comfort and peace and quiet and stillness of mind. I'm very blessed that God gave me such refreshment in my sleep. 

Music from Amy Grand and James Taylor, Don't Try So Hard.


If you're interested, you can find Andrew's books on Amazon.

53 comments:

  1. Barbara, beautiful and well said. That’s incredible that he recovers in so few hours!
    I am thankful for your perseverance but glad you recognize the need to care for yourself too. Praying the respiratory clears up quickly!!
    Love,
    Tammy

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  2. Thank you Tammy. I have been known to stand outside in heat and cold until limb function returns. Heat holding up shade and cold with something warm around or over him. Service dog Ladron in attendance. She makes sure I'm doing it right. ☺

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  3. Sending so many prayers. I wish there was something more I could say or do. And props to Ladron who sounds like an amazing pup! Sending love your way.

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    1. Ladron is a Australian Heeler, and has mostly trained herself.
      Thank you prayers are our protection.

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  4. Barbara, so beautiful,sad,yet hopeful. May God give you extra strength and aid for your heavy burdens. You are amazing!! Love and hugs to you.

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    1. Gayl, thank you. I've found in life, truth of circumstances daily hold deeper truths that cause one to pause and take an eternal note.

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  5. Oh Barb. Thank you for sharing this. Your words and thoughts are beautiful. I appreciate your wisdom about how to manage the grief. I'm not in that position of caring for a loved one at present (unless you count boys with sickness that stay home from school). It sounds like you've come into a healthy mindset for this journey you walk. I so respect you.

    I continue to pray for you and Andrew. Now I have better insight on how to pray. I'm so glad you posted again!

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    1. Sick, cooped up boys, oh Lady bless you. Seeing our loved one ill still can cause nurturers a degree of helplessness. Especially boys with much energy
      Thank for your continued prayers.

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  6. Barb:
    Thank you again for sharing such a personal glimpse of your life -- and for encouraging other caregivers in the process.

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  7. Thank you for your post and honesty about caregiving. 16 years...how long oh God? My heart and prayers go out to you both. Nice to see the picture and put a face to your name. Praise to God for his daily strength.

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    1. Thank you Betsy, yes His strengh not my own.
      The pic is several years but I'm the same ole gal with longer hair and there's no way I could carry Bray, a standard wiener dog, like that now. In the pic, she is wrapping around my back and standing on my waist.

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  8. Barb, beautifully shared. Both you & Andrew are a testimony to God's enduring power. Surely only He could give you each what is needed to persevere. May He continue to be with you and know that you are the best caregiver Andrew could have. Praying for you both this morning.

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    1. Joanne, thank you for reminding me that I'm Andrew's best caregiver. I must admit, I get tired, exhausted, slap happy and laugh at things I shouldn't. Then I think, boy I wish I had my own relief team... Then I stop and remember I do it's all of you.

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  9. B - beautifully written and expressed. Not hard to hear your heart in these words. You are a hero, in my book. xo

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    1. Susan, you made me laugh using my Facebook aka, B. 😁 I'm a hero only because My Savior is my hero first, but thank you.

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  10. Hi Barbara - I love how you and Andrew are tag-teaming online ... but it sounds like teamwork has become a beautiful part of your relationship.

    Thanks for the insight and wisdom ...

    Best to you, Andrew, and of course, the dogs.

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    1. Linda, I'm happy to report Andrew and I have always been a Team. Almost from the first moments we communicate online. Yes we are an online couple, and communication was prominent for us getting together. Career wise most people won't think an highly educated engineer and an Accountant would hit it off. But God had laid the experience path and the rest is our journey.

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  11. Thank you, Barb. It is beautiful to hear your heart, to gain a glimpse into your life. Thank you for all you do for Andrew.

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    1. Shelli, Andrew still keeps me even-keeled. My desire is to provide all he needs, even to my dismay sometimes. He's earned every ounce I can give.

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  12. I'm extremely thankful that you're getting to share your perspective and extremely sad that Andrew is doing so poorly. May the Lord continue to give you the strength to do what must be done.

    This nasty bug going around is horrid! I hope you're feeling better soon!

    Love and prayers for all of you!

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  13. I’m so sorry, Barbara. Caregiver guilt is a real thing. It hits hard and often. May the God of green hope draw near and comfort you. May you feel the peace of Jesus—who’s perfect love casts out all fear and guilt.

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  14. Barbara,
    I love how you say, ask, but don't dwell, but if you must, dwell in the shadow of his wings. Beautifully said. And don't let anyone tell you how to grieve. Praying for and loving you both.

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    1. Mary, thank you. Your love and concern is a protection all about us.

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  15. Barbara and Andrew, I'm sorry things have been so hard for both of you for so long. You amaze me with your endurance and perseverance. Praying for you both to know God with you, giving you strength.

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    1. Lesley, perseverance begets endurance and endurance begets strength. Thank you for the reminder how strength in God continues.

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  16. Heartbreaking and inspiring at the same time...

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    1. Sandra, the elements of a great story, I'm told.

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  17. Beautiful, Barb! You are both so strong. Praying your infection clears up quickly. Praying for both of you!

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    1. Tara, thank you, we both have it and it's an added burden.

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  18. I can't even begin to imagine. Whenever I don't see Andrew post somewhere I wonder for a second or two, and then I pray for you both. Take care of yourself Barb!

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    1. Marisa, the stirring of the soul is our immediate need. Thank you.

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  19. Thank you both for bringing us along on your journey. Prayers--always.

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  20. Praying for you both! So thankful you are still posting and keeping us in the loop!

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    1. Karrilee, thank you for supporting Andrew during his journey.

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  21. I pray for both of you every day. You must be a very strong woman.

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  22. Janet, thank for the vote of confidence. I think I fake it so someday I make it. 🙂

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  23. I can totally relate to the guilt and grief... and the eventual becoming numb. Over the decades with Jerry always getting worse, never better, I've learned A LOT about myself as his caregiver and how to best cope. Even if coping meant numbing a part of myself to get by. If not for the saving grace of God, there's no way I could do this all these years.

    Praying for your health, your caregiving, and your love for Andrew... praying for all the woofers you love and care for... and as always, praying for Andrew. Blessings.

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    1. Diana, oh thank you for showing me that my actions are selfish. I failed miserably yesterday with the guilt, but it ended up being the right thing to be here.
      Thank you for the continued prayers, they are our protection.
      Praying for you and Jerry. May your days have moments of silver lining that can cause you to pause and smile.

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  24. barbara, i love your post. i'm an RN, but now am a caregiver to my husband as well. it is not a full-time job, but he has had some strokes in the past few years and needs some help here and there. i understand on a limited level some of what you are talking about. i think the grief playing its way throughout the whole process tends to sap our energy at varying degrees in the process for sure. that is one reason some simple tasks seem to take so much energy:(

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    1. Martha, I agree that grief depletes a caregivers energy, and I must say patience. The moment of pause before you act or react can make the difference in how the next hours of the day before proceed. Although the moment of pause doesn't always occur and consequences then can cause it's own level of grief.

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    2. Martha, I'm praying for you and your husband and the journey ahead. You medical background will become invaluable for his care.

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  25. Barb, thankful to hear your heart here. I am so thankful that Five Minute Friday has brought you and Andrew into my life. Oh friend, my heart aches for you. Only because their is so much complexity in advocating for Andrew with others who might not understand what is best. Praying that you are able to feel your grief fully but also know His love carries you.

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    2. Thank you. Advocacy is a part of the vows taken. For better or worse, in sickness and in health. Most people don't notice, you pledge sickness before health we did notice. Andrew in our vows made a strong point that I understood the depth of that statement. Actually I was only grazing the surface almost 16 years ago.

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  26. I can't even imagine what it's like to be in your shoes, Barbara. Not only is this physically challenging for both you and Andrew, but it's emotionally grueling every single day. My prayers are with you both! I'm hoping there are moments of joy, love and comfort in the midst of the pain.

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  27. Beth thank you for your compassionate words. God helped me find a wonderful home surrounded my high desert mountains. They bring beauty and serenity everyday. The dog pack usually find away to make Andrew laugh once a day. We find comfort in out Lord everyday even on the most trying days. The saying is, it's not a bad day just a bad moment in the day. Not sure who said it.

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  28. Just thinking of you two. Don't even know you but you're on my heart. I don't understand it all. It is beautiful though how you're walking this together, with Jesus. Like Kara Tippetts said in part, the nearness of God is my great great good. "But as for me, the nearness of God is my good;
    I have made the Lord God my refuge,
    That I may tell of all Your works." Ps. 73:28

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  29. It is heartbreaking to read of your struggles, but I thank you for sharing so honestly and openly. I am praying for you both as you persevere through these incredibly challenging and painful days. You are loved.

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