Musings of an Unintended Caregiver

Please join me in welcoming IJ Woods, guest blogging this week from Conscious Departures. I think he is amazing and hope you do too.

I have to begin by thanking Beth for the opportunity to post something on her blog site and to her readers for accepting me into her home. I’ve found Beth to be not only a joyful and dedicated caregiver to her mother but also someone proactive in encouraging people like myself, an amateur caregiver, attempting to write as a way of giving back a little of what they’ve learned.

A couple of years ago the word “caregiving” meant almost nothing to me. The word “hospice” was a place someone went to die staffed by poorly paid people who may not notice you exist. The phrase “palliative care” was nowhere to be found in my vocabulary. Now these phrases and words are filled with potent emotions and meaning for me. My understanding has changed. Emotion and feeling; what a difference that makes in our lives.

The emotional connection came about because I was the primary caregiver for someone I loved. This someone was my common law wife, closest friend and dearest companion for nine years. I refer to her as K in my blogs but here I will affectionately call her Kris. We didn’t have the ideal pie-in-the-sky relationship or anything like that. We had our troubles, fights and so on, but we stuck with each other and developed a deep love. Then one day we discovered that Kris had cancer. I was headed off to Europe on business the day she told me. My guts were scrambled from the moment I heard and the entire time I was gone. It was not the potential loss that was so hard but the pain of knowing she was going through something terrible and may suffer.

It’s interesting for me to observe my inner workings. I think I know myself and then come to discover things hidden away that rise to the surface and manifest into this world only under the right circumstances. Finding out that Kris had cancer was one of those times: I cried. The calm, often stoic person I am (or think I am) evaporated and from somewhere unexpectedly came the crying. I so much didn’t want her to have to face this.

With Kris being diagnosed with cancer I had no idea what we were entering into, but assumed the best would unfold. After all, we had medical insurance and certainly, I thought, this sort of thing can be taken care of with today’s advances in treatment. Kris, on the other hand, used her strong analyst background, found out all she could and remained more sober. I won’t go through the entire story, but I essentially became one of the over 50 million amateur caregivers that now exist in the United States. I didn’t know what was in front of me nor did I know how deeply the experience of caregiving and losing a loved one would affect me. I didn’t even know I was a caregiver.

Consider just one big obvious aspect of this type of caregiving: witnessing someone you love dying. As the caregiving became more intensive I also watched Kris deteriorate increasingly each day, both physically and mentally, at a rapid pace. Kris was an absolutely beautiful woman both externally and internally. I was attracted to her not only because she was such a beauty but because she was one of the most trustworthy and sincere individuals I had ever met. She didn’t hesitate to speak the truth no matter to whom and no matter the consequence; she had no tolerance towards injustice. At the same time she was incredibly compassionate and had an ability to make someone feel heard. The more I was with her the more I came to appreciate her endearing qualities.

Time and ageing often allows us to go through deterioration slowly so that those who are always with us are not shaken by the changes. Imagine someone close to you aging sixty years overnight! Watching the person I loved become decimated over a relatively short period of time was traumatic. But I have to say, there is also kindness in this process. As one part of Kris deteriorated another part became more prominent; the part that was not subject to the mental or physical condition. It’s the part that is the real us and has a personality so beautiful that it sweetens the atmosphere for anyone who comes into contact with it. It may sound silly, but it became a holy experience to be with her. The presence of something quite exceptional in its simplicity and purity was unmistakable. And so the pain of watching the erosion was fully balanced by the growing presence of her deepest self. Both things live with me today.

The caregiving journey I went on was a full blown Lewis and Clark expedition heading off into the unknown, except unlike me, they were most likely prepared for the journey. It’s not that for me there were no maps or documentation by others who went before, I just never considered it was needed. I may as well have started to climb Mt. Everest in a pair of flip flops with a couple of Powerbars and a bottle of water stored away in a Trader Joe’s tote-bag. It’s a wonder things turned out as well as they did. And what do I mean by “well”?

If I take on the opportunity to care for someone dying what is the absolute best I can offer that person? These are their final moments and though not everything is dependent on me I can help to make each one of those moments outstanding. That is the most important gift I can give and one that I hope will be bestowed on me some day. What does that look like? I don’t know. It’s something we have to listen very carefully for.

I remember speaking to this fellow whose long time girlfriend was dying of cancer. She was a nurse. There was so much he wanted to do for her but all she wanted was to be left alone in a forest cabin. She wanted to spend her remaining days being reminded of the beauty of existence, surrounded with materials and videos that focused on only that. She wanted to meditate, slow down, feel the presence of God and be with the self to prepare and go through the final transition. She wanted no distractions. This upset him, but he eventually complied and that’s how she spent the remaining two weeks of life. Who am I to say how it should be? But at least I can do everything in my power to facilitate the person’s comfort and freedom from distractions so they can do what they feel they need to do.

So I find myself today passionate and almost evangelical about this subject.  I understand that a life preoccupied with death is silly, but not to be talking and thinking about the end game at all is being irresponsible to ourselves and to those we love. Not making any preparations can cause a lot of turmoil for the person dying and certainly those remaining. Caring for another individual going through an end-of-life process is something I now believe is baked somewhere into our cake. It’s actually a blessing and something that humanizes even the hardest people. To learn about it and do our best is strenuous, but immensely satisfying as if an important part of us has finally found nourishment.

This entry was posted in Caregiver, Dying, Life, mindfulness, Resiliency and tagged , , , , , , , , , . Bookmark the permalink.

10 Responses to Musings of an Unintended Caregiver

  1. Amy Lapetina says:

    Thank you IJ for your beautiful post; for your honesty; for letting us into your heart and emotions and for helping us to prepare for this journey which most of us will have to take. Thank you, Beth for allowing IJ to add his spin to the experience as a caregiver; giving us a total picture of what you, Beth, are going through. Lots of love. xxxxxx

    • Amy, you are most welcome. My hope is to create a safe place where more people such as yourself and others will feel comfortable sharing their end of life caregiving experiences. May we all be healed and guided by the measure of comfort that comes from knowing we are not alone.

  2. ijwoods says:

    Reblogged this on Conscious Departures and commented:
    I was invited by Beth, author of the Middlescapes blog, to write something for her readers. Beth is taking care of her aging mother and is chronicling her experience through blogging. She’s a wonderful writer and provides an insightful window into the life and experience of a caregiver in the midst of taking care of a loved one at home. I highly recommend subscribing to her blog, it’s a great read. Here’s a snippit and a link to what a wrote. – IJ

  3. Sylvie says:

    I enjoyed your guest post Beth. His story widdens the caregiving circle ….I enjoyed hearing his story and what the experience was like for him. I can’t help but think how many people are caregiving and going through such profound experiences every day.

    • Sylvie, you are so insightful. The circle is widening and including Ira in it feels holy. He is a remarkable human being, from whom we can learn much about the patience and fortitude behind acts of end of life care. It is amazing to be sharing such stories with people as you say, who “are caregiving and going through such profound experiences everyday.” It is an honor to host one such place where this may continue to happen. much love. Beth

  4. bethhavey says:

    IJWoods writes beautifully and honestly about the role he played as K was dying. In this post I was so touched by his reference to watching K lose her beauty, almost fade before him. Recently I lost a very dear friend to cancer. I saw Sue, 58, in late April and watched her arrange the flowers that I had brought her. Four weeks later (we had been traveling and I could not be with her which was hard for me) I saw her in hospice, thin, unable to talk, a shadow of herself. And now she is gone. Death will never be easy for the living. But the living need to open themselves to helping and being there when someone is very ill or dying. We cannot shelter ourselves from this profound fact of life. We all hope we will have the strength that IJ did when it’s time for us to be there for someone; we all hope we will have the inner strength and grace that K and Sue had when it’s time for our own deaths.

    • Thanks Beth, for taking the time to comment. I am certain IJ too will respond but I was touched by your thoughtful words. IJ is an amazing writer who reveal things layer by layer right down to the bones. Watching someone age “60 years overnight” or fade away in a matter of weeks, leaves little time for those who care and witness to keep up with the speed at which changes occurs.

      Equally as difficult, is the journey that requires the slow burn of watching someone slip away in inches, noticing every day that the beach ball has gone further out in the waves, and no longer returns with the incoming tide.

      Anytime we experience the loss of a loved one, up close and intimately personal; bit by bit, in huge chunks, or all in one shocking episode – it is true, as you say “we cannot shelter ourselves from this profound fact of life”, it shakes us to the core. It takes tremendous resiliency of body, emotion, mind, and spirit to remain present throughout the experience and come through to the other side with a greater appreciation of and faith in life as it unfolds. It is my sincere prayer that each human being would have at least one person by their side (if that is their wish) to act as midwife in the labor of this great mystery.

      Blessings and peace to you.

    • ijwoods says:

      Hi Beth, thanks for your supportive and kind comments. The amazing thing is that in our mind the strength may not be there but I think for many, if not all of us, it’s just laying dormant waiting for the right time to come out.

      One thing I discovered through all this was our natural compassion and ability to be caregivers. It was one of those things I’d never think I’d be doing or would even be able to do. Kris and I always assumed I would pass away before her so caregiving wasn’t something I ever took time to contemplate. She was more concerned about it than I was.

      I’ve walked away from plenty of things in my life, and so I would be lying if I didn’t say that the strength was given. I was literally taken to another level of consciousness where the ability and caring flowed from me like a fountain. It was strong and it was decisive. It was something rooted in a feeling for a person I loved but who I also did not own. Our paths intersected in this life and as much as I loved her she was not mine to keep. The only thing I got to keep was the sensation of her in my heart. One thing I could do was care for her as she completed her journey here on earth. It was my privilege if I was willing to take it. Doing so enriched my life and in the end it was a gift to me.

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