The Emotional Toll of Caregiving.

I spent my days in the hospital near mom when she was hospitalized with her last illness.  She started out optimistic (we both were) that she would make a swift recovery.  Every day there were setbacks and she started getting discouraged.  “Don’t leave me, Lori” she said.  “I need you”.  I promised I would be there with her every day and I was.  Still I was unable to get the doctors to communicate with me honestly so we could keep abreast of her health issues.  Day by day she was more and more uncomfortable.

I was mom’s advocate in the hospital.  I was the one who asked for a nurse to turn her to be comfortable, to ask for ice or some water for her thirst, etc.  Mom said “I don’t want dad to see me like this.  He doesn’t like hospitals.  He can visit me when I get to the rehab center”.  We called dad from mom’s hospital room so she could talk to him.  Before her second surgery, the doctor suggested that dad see her as she was 90 and might not survive the operation.  That was the only time he talked honestly about her chances.  Dad visited for a short time and then not again for about a week.

I asked the doctors daily for honesty in response to my questions about her chances of recovery.  The doctor remained overly optimistic and unrealistic in their prognosis to me.  Finally I decided to get a hospice consult even though it was in the midst of the holidays.  Everyone was busy but they talked to me for 45 minutes.  A few days later I asked them to talk to mom as she was very uncomfortable and I didn’t believe she was likely to recover.  It took 4 more days to get the hospice doctor to her bedside.  He explained the difference between “comfort care” and “curative care”.  She already had a DNR and other papers, but now it really had to be spelled out.  What did she want to continue and did she want pain relief.  About 4 hours later, she asked me to tell the doctors she wanted hospice.  She wanted just comfort care as all the tests they were doing daily were wearing her out, causing her discomfort and not likely to improve or expand her life.

It took 6 hours to get the 2 doctor’s signatures that were necessary for her to go onto hospice care.  Shortly after that I left for the day.  The next day I brought dad to visit and we went to her new room where she was sleeping with quiet music playing.  She slept too deeply and we couldn’t talk to her.  The nurse thought mom would be more likely to be awake the next day after she rested more from her exhaustion of all that pain and testing.

Instead she passed away in the night.  The hospital called me and I told dad the next morning.  It was such an emotional reaction I didn’t know how to react.   Dad just curled up into a little ball in his bed and said: “What am I going to do?  What am I going to do?”  I started to cry.  Dad then said: “Don’t leave me, Lori.  I need you”.  I promised dad I would stay with him and when he was ready I would move him to a new assisted living facility near my home.  He hadn’t wanted to live in the Northeast before, but now he was ready.

That was a year ago.  Now dad lives near me and I visit him almost every day.  Dad still has Alzheimer’s but is aware of who I am and where he is.  He forgets what we did last week but he knows most things from the more distant past.

20 Responses to The Emotional Toll of Caregiving.

  1. What a beautiful and honest story. I really appreciate all that you did for your mom and continue to do for your dad. You are a wonderful daughter. I am so glad our blog paths have crossed.

    Beth Z (of Middlescapes.com)

  2. Thank you, Beth. I find support also in reading your blog and others. It helps to know I am not alone in my efforts.

  3. Lori, how far are you from Kentucky? My hospice is hosting a teleconference from the Hospice Foundation of America on April 25 (this year’s topic is Ethics and End of Life Care), and I was wondering if you would possibly be interested in sitting in our panel… ?? I know that is a long shot but thought I would ask! It would be wonderful to have the personal perspective from a family member who has really experienced these issues.

  4. Alice, thank you for the invitation. Actually I live in the Northeast, so quite far. I really feel that the family perspective is very important in these issues. But I wouldn’t be able to be there. Is this conference for professional caregivers? I bet there are local families who have experiences similar to mine. I worked at a medical center for years (as a researcher) and I can tell you it is a lot easier to walk into the hospital or clinic as a workplace than it is as a worried family member! Thank you for commenting on my blog.

  5. frangipani says:

    Hi, I’ve nominated you for the Sunshine Award. Feel free to accept or pass on it. No worries.

    FS

    http://frangipanisingaporenicum.wordpress.com/2012/04/06/the-sunshine-award/

  6. I am honored! and I accept. I will post my follow-up nominations in the near future. Thank you for following my blog. Lori

  7. Rhonda says:

    Lori,
    Thanks for stopping by my blog and liking my post on Aging Gracefully. After reading your posts, my heart goes out to you. I hope you do find some solace in knowing that everyone who reads your posts adds you and your Dad to their daily prayers, as I will. Use this wonderful community to release some of your days’ stresses. Everyone here would be more than happy to give you their shoulders. Stay strong.
    Rhonda

  8. Thank you, Rhonda. I do find the blogging community to be a great support for me and my dad. It helps to know I am not alone in this.

  9. JC says:

    Lori, I found you via Kathy’s Blog: Healing from the loss of a parent. It’s very comforting to find people here who in one way or another are going through similar experiences and share them. That’s why I started my blog – as an outlet for my emotions and experiences and to reach out to others. My dear mom suffered from dementia but from all my readings of blogs and posts, we were all blessed and spared certain pains as my mom knew who we all were up until she became unconscious the last couple of days during her 2-week stay in hospice. But it was very painful to watch her deterioration the last yr and a half of her life – not being able to perform simple tasks as operating a TV remote, forgetting how to answer a phone at times, inability to write and very, very halting speech. Alzheimer’s is just a heartbreaking disease. I wish you all the strength and support in caring for your dad. Just like you cared for your mom, you are a blessing to them both. Remember, we are not alone. Jane

  10. ginkgoguy says:

    Lori, thanks so much for stopping by and liking my posts. Your blog is poignant, heartfelt, and moving all at the same time. It’s such a relief to know that we’re not alone in trying to support a loved one suffering from Alzheimer’s. Take care and stay strong.
    -Steve

  11. It is so difficult to care for a sick parent, especially when you are suffering loss. I wish you all the best.

  12. My blog’s focus is on the experience of being a caregiver for someone with Alzheimer’s disease. I find it interesting how caregivers I have spoken with are so reluctant to talk about the emotional toll they experience. That is why my blog http://www.1raymondwholmansr.wordpress.com was created. I am hoping more and more caregivers like yourself are will to post comments. My father died in 2001, and only has been in the last year or so that I have become aware of how it affected me. I am very graceful I had the chance to take care of my father. It was a great blessing. I only wish I understood better the term, “make certain you take care of your own Self”, during that time period.

    • I agree some, but have found other blogs also where people share the emotional effects of caregiving. Some have been listed on the pages where I have awards and suggested other blogs. You are right in that on an every day bases, we don’t think about how the constant stress of caregiving is an emotional burden on ourselves. If someone says “How are you?”, we automatically say “fine”, without thinking of how we really are. I think the day to day responsibilities push other thoughts from our minds. It is over 2 years now since mom passed away, and I still think about her every day. I still wish I could have had more power to change the course of her last 2 weeks — just so that she could have been free of all those tubes and machines long enough to have a good last conversation with dad. I continue to hope and plan to do a better job of keeping the focus on quality of life for dad when his time comes. There is a time to stop heroics for a cure and focus on making the rest of the patient’s days more comfortable. And yes, you are right, in all this, I need to take more time for myself. This year I am trying harder to pull out whole days for myself. Dad gets his care in his assisted living facility and he is happy and comfortable there now. I am able to skip days when I don’t visit but instead do something for myself. It took me a long time to be able to back away enough to take this time. Thanks for visiting my blog and for your comment.

  13. I wanted to thank you for following me back. Your blog came to my attention as I was researching the topic of hoarding. One of my, buried deep, secret reasons for wanting to get my hoarding issues sorted out is because I’m afraid of what it would mean to my loved ones to have to deal with what I leave may behind. I was very fortunate to survive a massive coronary 4 years ago and it has taken me this long to begin dealing this aspect of my life…I don’t want to leave it for them.

    Your story is beautifully written and I’m sure it will help me on those days when my motivation levels start lagging.
    -k- of k&p Catalano

    • Thank you. Seeing the hoarding by my family continues to motivate me to be careful also. I have a place for most of my possessions even in my small house, but I still need to go through my paper files and accumulations of things to pare things down. Doing this for my parents has taught me that I don’t want to leave this for my children. Thanks for your comment.

  14. ginkgoguy says:

    Hello, I just wanted to let you know that I’ve nominated you for the “Very Inspiring Blogger Award”:

    http://ginkgoguy.com/2014/08/08/a-brief-interlude-im-a-somebody/

    You’ve always been supportive with my blog posts, and they’ve always helped in getting me to finish what I started. Thank you so much!

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