Dear Barbara, I have heard on a recent podcast that you did not have the best relationship with your mom. I would love to learn more about the strategies you used to keep grounded in the present, that allowed you to do the best caregiving of self plus your family unit plus your mom, minimizing breakdowns. What would you have done differently?
To answer the last part of your question first: What would I have done differently? Nothing! In hindsight, I did the best I could and from that best, it was a good five months. I was able to let go of the past and live, love, and give in the present.
How did I stay grounded, take care of myself, my family, and my mom in the five months she lived with us before she died?
Here are my thoughts:
I learned "Love is a verb.” Love can go beyond the emotion we think it is to an action. We are loving by doing the job of caring, physically caring, even if we can’t touch into the emotional meaning of the noun love.
I learned you can’t get your own needs met by the ill or dying person. They are going inward where there is only room for one. They become self-centered, think about themselves, don't have much room for others. SO we, the outsiders, have to give what we want and, in many cases, need. If we need physical affection (hugs, touching) we have to give it. If we need to talk about a topic, we have to initiate it. If we need to feel closer, we have to make the moves.
All of us have unfinished business in relationships and as death approaches in the months before death it is up to us to find closure if that is what we need.
Roles tend to become reversed. I became the mom in our relationship, and she became the child. Not in a bad way; in a nurturing and decision-making way.
The past is the past. I decided I didn’t want to “blow” the present by feeling and feeding the past regrets, injuries, mistakes. I let it all go and concentrated on the now, on the gift of time that we had. I decided to take that gift and use it wisely. I wanted to build good memories that could maybe overshadow our past.
In those last five months, I tried for us to live in the present, to build good memories, to love, give, and live in the moment.
It has been 28 years since my mother died. I have good memories of our five months together and I will say time has tempered the hurts that bruised our relationship. I can also say “I love (noun, feeling word) my mother.”
We can make our love a conscious decision by our actions.
I just wrote a new book, By Your Side, A Guide for Caring for the Dying at Home that is for caregivers who are caring for someone as the ending of life approaches. I think it has the guidance you are looking for.
Blessings to you. Barbara
Something More... on love and caregiving
When someone we love no longer responds, it can be difficult to know what to do. Barbara explains how continued presence and simple acts of care can still offer comfort, dignity, and connection.
4 comments
Barb
What a lovely expression for how to navigate to a positive place from an earlier place of discomfort. I can only imagine the people who will take solace from your words, your experience and your guidance. Just love the time you have left. Don’t burden yourself with past pain and loss. Those are extraordinary words to live by when you are in pain or grieving a complicated loss. Thank you. As always.
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BK Books replied:
Hi Barb, thank you for your comments. I try to give others a comforting way to live through the difficult challenge of caring for someone as end of life approaches. Blessings! Barbara
What a lovely expression for how to navigate to a positive place from an earlier place of discomfort. I can only imagine the people who will take solace from your words, your experience and your guidance. Just love the time you have left. Don’t burden yourself with past pain and loss. Those are extraordinary words to live by when you are in pain or grieving a complicated loss. Thank you. As always.
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BK Books replied:
Hi Barb, thank you for your comments. I try to give others a comforting way to live through the difficult challenge of caring for someone as end of life approaches. Blessings! Barbara
Sue
Thank you for re-minding me! To have cared for my sister over the last few years as her health declined … and despite her disdain, it seemed, for me…was heartbreaking. She was known to be mean and sarcastic and full of hate, turning her back on those who were close to her but these last few years, as her only remaining family, she had no choice but me to care for her. Your remark that love is a verb is a buoy for me. Such a long story but I was with her as she was actively dying, thanking her for her older sistering when I was 5 and she 17, walking me to school. I was able to tell her she was loved and we held hands through her last breath. I am a hospice nurse currently and can offer this notion of love to caregivers/daughters and sons when they have a lifetime of difficult history with their loved one.
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BK Books replied:
Hi Sue, life for most of us is hard work in one way or another. Relationships seem to be where a big part of that work falls. Blessings to you in the work and guidance you are giving. Barbara
Thank you for re-minding me! To have cared for my sister over the last few years as her health declined … and despite her disdain, it seemed, for me…was heartbreaking. She was known to be mean and sarcastic and full of hate, turning her back on those who were close to her but these last few years, as her only remaining family, she had no choice but me to care for her. Your remark that love is a verb is a buoy for me. Such a long story but I was with her as she was actively dying, thanking her for her older sistering when I was 5 and she 17, walking me to school. I was able to tell her she was loved and we held hands through her last breath. I am a hospice nurse currently and can offer this notion of love to caregivers/daughters and sons when they have a lifetime of difficult history with their loved one.
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BK Books replied:
Hi Sue, life for most of us is hard work in one way or another. Relationships seem to be where a big part of that work falls. Blessings to you in the work and guidance you are giving. Barbara
Lolita Silicani
Sorry for my blank comment just now, pressed return before I was ready. ;)
Dear Barbara,
I love what you said about the word love being a verb and then a noun.
You are so right, I too experienced the role reversal with my Mom in her last year of decline.
And I cherish my last memories with her in the now and present time.
Thank you for pointing out things I didn’t realize I had experienced, until I read your words.
As always, thank you for your wonderful inputs.
Lolita :)
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BK Books replied:
Hi Lolita, How fortunate we were to have been given that gift. Blessings! Barbara
Sorry for my blank comment just now, pressed return before I was ready. ;)
Dear Barbara,
I love what you said about the word love being a verb and then a noun.
You are so right, I too experienced the role reversal with my Mom in her last year of decline.
And I cherish my last memories with her in the now and present time.
Thank you for pointing out things I didn’t realize I had experienced, until I read your words.
As always, thank you for your wonderful inputs.
Lolita :)
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BK Books replied:
Hi Lolita, How fortunate we were to have been given that gift. Blessings! Barbara
Annette
Barbara, beautifully stated. I had the privilege of caring for my Mom and Dad for five years before they passed within two and a half years of each other. My Dad died last before Christmas in 2020. I feel blessed to have been able to do so and tell many people that I fell in love with my parents all over again.
Like you, I concentrated on the present and our time together. Doing so brought unspoken healing for any hurts that any of us may have experienced with each other.
It was not all rosy. It was five years of hard work, patience, becoming the parent, tirelessly giving of myself, and so much more that all caregivers can relate to, but what I got out of it was so much more: a genuine appreciation of my parents and a love I will carry with me for the rest of my life. I would not trade the time for anything. My spiritual and religious life grew as well.
It’s been a year and a half since my Dad’s passing, and I am still recovering physically and emotionally, but I am content knowing I did my best, gave my all, and would do it all again. I have also become more knowledgeable and sympathetic to friends who are now on the journey, and I hope I can help them if they need it.
I wish good luck and love to all.
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BK Books replied:
Hi Annette, thank you for sharing the caregiving experience you had with your parents. We truly are given a gift in returning the care they gave us as we began life. A cycle completed? Blessings! Barbara
Barbara, beautifully stated. I had the privilege of caring for my Mom and Dad for five years before they passed within two and a half years of each other. My Dad died last before Christmas in 2020. I feel blessed to have been able to do so and tell many people that I fell in love with my parents all over again.
Like you, I concentrated on the present and our time together. Doing so brought unspoken healing for any hurts that any of us may have experienced with each other.
It was not all rosy. It was five years of hard work, patience, becoming the parent, tirelessly giving of myself, and so much more that all caregivers can relate to, but what I got out of it was so much more: a genuine appreciation of my parents and a love I will carry with me for the rest of my life. I would not trade the time for anything. My spiritual and religious life grew as well.
It’s been a year and a half since my Dad’s passing, and I am still recovering physically and emotionally, but I am content knowing I did my best, gave my all, and would do it all again. I have also become more knowledgeable and sympathetic to friends who are now on the journey, and I hope I can help them if they need it.
I wish good luck and love to all.
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BK Books replied:
Hi Annette, thank you for sharing the caregiving experience you had with your parents. We truly are given a gift in returning the care they gave us as we began life. A cycle completed? Blessings! Barbara