We Can’t Reverse Time June 21, 2012Posted by ijwoods in Blog+.
Tags: caregiver, caregiving, preparations, providing comfort
The story I’ve heard told of Buddha was that as a prince he had been sheltered from seeing the suffering of the world. Then one day, having left the palace for the first time for a ride around town, he discovered old age, sickness and death. Seeing these things overwhelmed him so much with grief and compassion it ignited his journey to find the truth.
A number of years ago K introduced me to a wonderful couple, a husband and wife, whose company I always enjoyed. I’ll call the husband Dave and the wife Elyce. At one point Elyce was diagnosed with cancer and began to go through numerous treatments. We would run into both of them from time to time at various events and check in on how things were going. Elyce and K communicated privately on what seemed a pretty regular basis and most especially during the last year of K’s life. About month ago Elyce also passed away. It was painful for me to hear because I felt very connected to her battle and thought she was overcoming it. But I also couldn’t stop thinking of Dave who spent many years supporting and caring for her.
From where I sat it looked like a long and tough fight although whenever you saw them you’d hardly know it. Their attitude and sense of comfort never gave it away. Now with Elyce gone I couldn’t help wonder if Dave was experiencing the same things as I did. I really wanted to communicate with him, no matter how awkward it might be.
Being a caregiver and participating directly with the passing of a loved one changes things. Before if I heard about someone fighting a serious illness or about someone caregiving, even someone close, it just seemed like a normal everyday thing. I rarely found it shocking except in one instance with a very close friend; I just always assumed that this was how our world is designed. We come, we go and there is no escape from the big process. But now I see things differently.
Nothing has changed – everyone is still getting sick, old and either coming or going from this world, but I feel I have become humanized by the caregiving and involvement in the end of life process. Now when I hear about someone in a caregiving situation I feel a strong emotional connection. It hardly matters who it is, just hearing about it brings up the long complex experience I had with K. When I hear that a person has just lost a loved one I can still feel the emotional response I had that morning when K laid there in our bedroom with no breath.
I wrote to Dave immediately after I heard of Elyce’s death hoping he was okay. I didn’t hear anything back but really didn’t expect to. I then saw he posted something on Facebook the other day so I dropped him another note. I also mentioned this blog thinking it may be of interest and that it might give some comfort to read the about my experience, particularly since it was someone he knew. He was grateful for the contact and mentioned that he felt there’s no way to prepare for primary caregiving. I could completely understand what he was saying. Until you have lived through it you cannot imagine all that goes on both externally and internally no matter how much you hear ahead of time.
And so, it got me thinking as to whether attempting to prepare (the mission of this site) was just a bad use of time. It only took me about 1/5 th of a second to conclude that I wished I had been more prepared than I was. As I’ve mentioned so many times on this site, K and I were prepared for the details, but not as well prepared for the personal side of it. I think that was in part due to feeling we had a good perspective on life, felt internally strong and could handle whatever came our way. And to some extent it was true, but there were also many blind spots.
I know I can’t reverse time, but here is what I would be suggesting to myself if I could sneak back in time and whisper into my ear about a year ago:
- You will not know the timing of K’s death. Don’t assume she will be with you for a long time. Every moment with her is precious and make sure she always knows how precious these moments are. And for your own sake don’t squander that time because she is not coming back once she goes.`
- Drop everything when you must be with her. Don’t let anything distract your attention. Show her you care about her more than anything else going on.
- Share more interesting time with her; don’t just hang out watching TV as a non-strenuous way to be together when she becomes very tired. Read her a book. Talk about the early days of your relationship and share what you were thinking and feeling. Ask about how she is feeling and listen (if she has the energy).
- Never hesitate to ask for help, but also talk it over with K. She may not understand what you are doing or why. Unilateral moves that include unexpected people showing up or other surprises may be disturbing and unappreciated.
- Anyone who comes into the home must treat K with the utmost respect, whether it be a doctor, nurse or caregiver. She should be explained what non-emergency thing we are about to do to her (such as move her, bathe her, etc.) and ask if it’s okay first.
- As early as possible attend seminars and/or briefings provided by the local hospice or local government about caregiving. Speak to the professionals who caregive day in and day out with hundreds and maybe thousands of people. Listen to them and gain as much insight as you can. These people have an enormous amount of experience to consider.
- Read books written by people who’ve studied and worked with end-of-life issues, those who have caregiving experience, especially in a situation that mirrors yours, and by those who wrote about their experience with grief.
- Listen very carefully to what K is saying and do everything you can to fulfill her wishes, no matter how small. Make her feel you are totally there for her.
- Take care of yourself. Get proper rest otherwise you can’t think straight. Eat well otherwise you may collapse and won’t have the energy to give your best.
Probably if I had received this advice to myself I would have still gone through a lot, but I believe the experience would have been softened and more beautified for both of us by adhering to just a few of these things.
As Buddha discovered; old age, sickness and dying are all part of our existence. In my mind that means there’s no reason we cannot (re?)learn what must be an ancient art of going through it gracefully.