Suddenly, you are confronted with things you don’t understand and that no one really explains to you either, such as pee bags, dialysis, and green vomit… This is not a Dr. Seuss book—this is one of your loved ones… and you must be strong in the face of something that is so foreign to you that you have no idea where to start.
This is why I felt compelled to write this blog series on hospice/palliative care and all the different aspects of what you deal with.
When your loved one and the doctors have made the difficult decision that there is no hope, you walk out of that meeting or phone call shocked, knowing that this person never walks in their front door again. As you are walking out of the hospice care unit into the sunshine and blue skies outside, you now know what “no hope” looks and feels like!
What we seldom address are the physical aspects of dying…
While coming to grips with having a loved one no longer be part of your universe, you are also having to deal with all the foreign parts of the illness/body and the fact that sometimes you are unsure if the person lying in that bed is your loved one anymore. The changes in the body are so radical, but there is no time to process any of this as you have to help and go into “action mode.”
For example, the green vomit that those in their dying stages often experience. I truly mean it. Dark green vomit. And inside our heads is an avalanche of questions like:
- What does the vomit mean?
- How can I hide my disgust?
- How do I not show pity?
- How to stay positive and have great energy for that loved one in the bed?
You might feel that you can’t do this, that you are not strong enough because you are not a nurse!
But you know what? I have a little bit of experience with this, and the trick is to forget and ignore all that happens around you: the beeping of the machines and all the physical aspects of this horrible situation, and concentrate only on their eyes because those you will recognize until the very last moment.
I did just that. The green vomit and beeping started and I helped by pushing the hydraulics of the bed up so they don’t choke as they are lying down. Hold the bucket, turn your body slightly away to give them a moment of privacy, even though you are there. And then, when the ordeal passes, look gently in their eyes and speak from your heart. Tell them whatever you want.
Final conversations, your emotions, and giving permission to let go
Don’t forget they might want to talk, too, but have no idea how to start the last few conversations they will have. And remember, dying is actually hard for some people. It truly is. The body is so weak while the mind and the will to live are so strong.
The last part that is the most difficult for me is to give them permission to go when in your heart it is so hard to do. But they need to know you will be ok so that they can let go of this life peacefully.
As we all know, relationships within families can be complicated. No one escapes this anymore in today’s world. So while you have to be strong and supportive of them, you might also have mixed feelings about your past relationship with the individual, possibly over unresolved issues. You must deal with how to forgive someone that did you wrong, which seems (a) not possible to discuss any longer as the physical situation of the loved one might have deteriorated too fast already, or (b) you have no idea how to start the conversation, or (c) you cannot forgive, which is even worse.
I saw people in the little lounge area for the families, and it was eye-opening how many had grudges, not only with the person that was dying but with other family members and how they reacted to the person who was passing away.
Please, if any of you reading this are in this situation, don’t judge anyone. We can only do our best and we are not capable of handling everything instantly. Best advice: give everyone a huge dose of breathing space. Take turns so that each individual has alone time unless they specifically ask you to stay. And please take that awkward moment to broach the difficult conversation. Say “I am sorry,” or “I forgive you,” whichever it is for you. Often, it won’t feel important any longer. It will all seem silly at that crucial moment.
All this is an enormous roller coaster of emotions that we all go through when losing someone, no matter how. But when hospice comes to play, the hope, as I said, is gone and time becomes timeless… You are in this hospice room with a diminished loved one who asked to stop all treatment, which is a huge decision that you cannot make for anyone else. Only they can make this decision, which often makes us feel hopeless as we watch.
In closing, if I could give myself advice in this situation, it would be to go with the flow of the patient and don’t forget that he or she is a patient… So please be patient, as we are not in their shoes. Don’t forget that even if they cannot talk or are in a coma, the last of the two senses to go is touch and hearing, so hold their hands and then keep talking to them. They can hear you. In my case, I got a little nudge of the hand during the last intake of breath. It was a very special moment.
Give all your love and good energy that is inside of you and let it fill the hospice room so that your loved one feels your presence in such a loving way that it will be easy for them to let go.
P.S.: In case you missed it, here are the other articles in this series: my thoughts on the hospice staff that I encountered during my friend’s closing days. And my experience with the recent passing of my best friend.
Cover image photography by @wendy-de-boer1