Caregiving: Many stories, one story

I cry easily. You can call it a fault. I call it a blessing. My heart is often moved to tears and so it was on this day of attending a Caregivers Retreat.

I heard stories. I “felt” stories.

And as I sat there, in that small circle of nine caregivers, I wept at our courage, our willingness to do the “hard” things in life for those we love, and our struggle to find self-love and self-nurturing in the process.

Before we shared, we were asked to write the name of the loved one we care for and then our name on a slip of paper. We placed these in a bowl on the table. We prayed. Then we shared. Many stories. One story.

One young woman has been caring for her husband who has a neurological, degenerative disease for the last seven years. She has reframed her life, calling it “monastic.” She sees her love and ministry to her spouse as a vocation, as a time of solitude and prayer.

women cryingAnother woman has a small child at home and is expecting another child. She helped her father as he died and now has a mother with Alzheimer’s living with her and her husband. She shared, “My mother is forgetting to take showers. She won’t wash the one sweater she wears every day and gets upset if I wash it.”

A woman in her 70s shared how after a few years of marriage her husband had a tragic fall and broke his neck. He is a paraplegic and she has been caring for him for the last 35 years, while she worked as a nurse and raised children. After her husband’s accident, she recalled standing outside in her garden, asking herself, “How am I going to do this?”

She said: “I’ve learned to tell myself today was good. Tomorrow? I don’t know yet. But today was fine and God was there.”

The Sister of Mercy who ran the retreat said that throughout all of this “God is in the mess. God is WITH us through the mess.”

But how do we find God in that mess? How do we feel that Divine presence and find peace when someone we love is in pain? How do we find balance when we toilet them, clean them, bathe them — how do we give them the dignity they deserve? How do we give ourselves the compassion and care we need doing all that and more?

We didn’t get into answers or solutions during this retreat day. But we listened and witnessed to each other. It was a safe space to express our anger — and there was anger — about why God would allow our loved ones to suffer. Why, as one woman shared, would God visit her mother with Alzheimer’s, her mother who could once arrange a meal in an elegant dining room but now could eat food only with her fingers and hands?

As another woman shared her story, I kept hearing her say again and again, “I keep holding my breath.”

Her words rambled in my heart. This is what much of the last three years has felt like for me since dad had the stroke — holding my breath.

So, as we were given some free time to walk the grounds and gardens, I reminded myself to breathe. Just breathe. That a conscious, deliberate breath was a “yes” to life and a “yes” to myself.

group-of-women-holding-hands-aarpI am still learning, like the rest of us who shared this day, that the most challenging part of this journey is acceptance.

I am learning to accept and “be” with what is, no matter what it is. Whether it’s being present to dad’s pain, to watching his decline, to getting him in the car with his walker and to a doctor’s appointment, to the dread of what any given day might bring.

To the acceptance of the small joys — dad’s eyes lighting up when he sees me, his smile, to hearing him say “I love you.”

Most of all, I continue to learn to let go. Again and again. Of what I can or can’t do, of my hope that others would help but they haven’t (even though I’ve asked), of my own expectations of myself. Of my desire to run away from it all, as many today expressed so painfully.

And yes, I am learning to take better care of myself. Naps. Walks. A good book. Some days it’s easier than others.

In the end, we spoke of choice. About everything. The choice of owning our feelings, to our choice to care for those we love and to care for ourselves as well.

And so, I am choosing. I choose to care for dad because — in my own soul of souls — I feel I am being asked by the Divine to do this right now, to “be” this right now. Many others today felt the same. Many of us felt it a “privilege” to care for those we love.

I am also choosing to love myself, to have more self-compassion, to do “small” things that give me joy.

cargivers brave and dedicatedAt the end of the day, we were asked to take a slip of paper from the bowl and to pray for the person being cared for and the caregiver. I am doing this. Not just for her and her loved one, but for caregivers everywhere.

And as the day ended, I was no longer crying, but thankful. I was in gratitude and awe of our bravery, our courage, our individual and collective journey.

Most of all I reminded myself to breathe. Just breathe.

Moment to moment to moment.

(Blogger’s Note: I have intentionally not used names and changed story details in respect for those present at this retreat.)




6 thoughts on “Caregiving: Many stories, one story

  1. I lost my mother just five months ago after a long journey with Alzheimer’s. Letting go is a process. A slow disease means a slow goodbye. I too lived with the constant tension of uncertainty about what each day would bring, how and when it would all be over. I would like to tell you that I was “ready” when she passed, but it was still a shock. But I think back to my time with her and am grateful for every moment, no matter how difficult it was. I feel very sad she is gone, but blessed she was my mother and that we made the journey in this life together. I hope and pray you will experience the same peace. In the meantime, trust there’s meaning and beauty in this time, for both of you.


    • Jo-Ann, Thanks so much for taking time to read my blog post and for your heartfelt sharing. Yes, “letting go” is such a long process. It often seems it’s layer upon layer upon layer. You have been through the caregiving journey so you understand what I’ve written … and I’m so thankful you had the time you did with your mother. I know when dad goes home to God, I will grieve and mourn, but I will also be so thankful for the time I’ve been able to spend with him. I do know and feel there is meaning and beauty in this time and perhaps in hindsight, I will appreciate it even more fully. Thanks for your prayer for peace, Jo-Ann, and again, gratitude for your sharing here.


  2. Marielena, I think of your Dad and pray for your family a lot. Particularly today, Cinco De Mayo- his birthday (that I will always remember). I ask God “why” many times regarding him. A man filled with such love and selflessness. The giving of himself and spreading God’s word all over the world. Why God did you give such a burden to Tony and his family. There is no answer. But I do continue to pray to someday find those answers. I was a caregiver for my mom who suffered for 7 months with brain cancer and my daughter was young and needed me also. You do get to a point where you just say “God please don’t let me go through this anymore … I just can’t” and he will answer. He will either give you the strength or lighten your burden. I’m sure everyone who was ever touched by your family has you all in prayer and you can’t give anything more than that. God’s peace be with you all. Much Love, Lisa


    • Lisa, how wonderful to see your words here! Thanks so much for thinking of dad today on his birthday, and so much gratitude especially for your prayers. Your sharing truly touched my heart. I often ask “why” God took away the one gift dad cherished, the gift of his “speech” that touched so many lives. I can only trust and believe there is some Divine reason behind it all. As a caregiver once, you know what this journey is like — it has its hardships, but also deep love and cherished moments. I’m so thankful to you and others who are praying for dad, mom and our family. Sending many blessings to you and your family, and much love in return, Lisa!


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