Advocacy, Death & Dying, Life & Living

a young hospice nurse makes a promise to her dying patients

Emily Gagnon is a hospice nurse. She lives in Waterdown, Ontario. Her Facebook post to mark the end of National Nurses’ Week 2020 brought me to tears:

“As we wrap up National Nurses Week 2020, I’d like to share a little bit about what I do as a hospice nurse. For those of you who are not familiar, hospice is a facility where people come to live out the remainder of their days. Many of the residents that I care for have a terminal and/or life limiting illness with limited time left to live.

What I love most about hospice is watching the residents and their families surrender all of the burden they carry and make the best of the time that they have left. In my three years of practice, I’ve witnessed miracles, tragedies, beauty, pain and everything in between. Residents and their families put all of their trust in us to ensure their wishes are fulfilled and their dignity is maintained.

I am honoured to care for, help and serve the residents that come to our hospice. End of life care is my biggest passion, one that I hold so close to my heart.

I will sit with you and hold your hand.

I will brush the hair from your brow.

I will do my best to explain why this is happening.

I will tell you that it’s going to be alright.

I will comfort your family as you transition.

I will tell you when there are weeks and not months, days and not weeks, hours and not days.

I will be there for you till the very end and beyond, this is my promise.

Thank you Emily and your fellow hospice nurses. Thank you nurses everywhere.

3 wise thoughts on being with someone you love as they die, which also apply to being with someone with dementia as they live

3 things to know when you can’t be with someone you love as they are dying

understanding the suffering associated with dying

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Advocacy, Death & Dying, Life & Living

3 things to know when you can’t be with someone you love as they are dying

Palliative care physician Dr. Mike Harlos gives advice to other palliative care doctors and nurses on how to best support people who are dying, as well as their family members and friends who may be going through the process with them. I love Dr. Harlos’s wisdom and gentle manner, which I have also featured here, and here I wish I had known of these videos before I sat by my mother’s side as she took her final breaths.

According to Dr. Harlos, there are three important things people should remember if they can’t be with a loved when he or she is dying:

  1. Not being in the room at the time of death does not mean you are absent at the time of death
  2. You are connected in spirit and in soul to the people you love
  3. Connection does not require physical proximity

When a family can’t be be present at the death from Canadian Virtual Hospice on Vimeo.

 

3 wise thoughts on being with someone you love as they die, which also apply to being with someone with dementia as they live

understanding the suffering associated with dying

dying with my mom

 

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Care Partnering, Death & Dying, Life & Living, Love

7-part palliative care plan works (for people AND cats)

About a month after Mom died in August 2016, her little kitty cat Pia Roma, who had lived with me since late February 2013, began to behave strangely. Coquetishly cute Pia, with her big yellow eyes, had always been a little odd, but this was different. She wasn’t herself at all. There were continence issues, a lot of meowing and more vomiting than usual.

“She has chronic kidney disease,” the vet told me after some blood tests and an overnight stay at the clinic. “And probably a bit of feline dementia too.”

The vet gave me medication for the CKD, and put Pia on a special diet. Pia continued to enjoy an active life for an older cat, despite her dementia. When I took her back for a check-up in 2017, Pia’s kidneys had actually improved. In the four years we’d been together, we’d grown really close, and I was delighted she continued to be so well. I was equally devastated, however, with the results of this year’s check-up, which took place last week. I wrote about it on my personal FB page:

“I took Pia to the vet yesterday afternoon. Unfortunately, the news isn’t good. The vet was impressed with the great shape she’s in for a cat her age, which I think is 16. The vet said her heart is in fabulous condition; she was surprised and impressed when I told her that Pia still runs around, plays, and jumps up and down from my desk to the floor and onto my very high bed.

The blood tests, however, told a different story. The results showed that, while her thyroid is fine, her kidney disease has progressed from stage I, which is was two years ago, to stage III, which it is now. The vet reckons she only has about six months more in this world.

The only thing that can be done for her now is palliative care to keep her comfortable. Of course I feel desperately sad, and I can’t stop crying, but what to do? This is life. And death.”

As with any terminal illness (e.g. Alzheimer’s disease, kidney disease, etc.), the patient does not suddenly die the minute she or he is diagnosed. People (and animals!) can continued to live relatively well until they die. I believe our job as care partners is to support those we love in living as they go through the process of dying. If I’m not mistaken, that’s what palliative care should be about. Hard as hell in the midst of our own grief, no doubt about that. But I know it’s possible.

So I have a palliative care plan for Pia. It’s essentially the same as what I tried to do for Mom, even though my hands were tied in many ways. Here’s the plan:

1) watch and listen carefully to try to determine what her needs are and do what I can to meet them

2) focus on what she can do each day

3) make her life as joyful as possible

4) maximize comfort

5) minimize pain

6) let her be the driver

7) respect the process and hold space for both of us

I know all these things worked a treat when I was with Mom, and I believe they’ll help Pia as well. Maybe they’ll be a blessing for those you love too.

https://myalzheimersstory.com/2018/02/25/3-wise-thoughts-on-being-with-someone-you-love-as-they-die-which-also-apply-to-being-with-someone-with-dementia-as-they-live/

https://myalzheimersstory.com/2018/04/27/understanding-the-suffering-associated-with-dying/

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Advocacy, Death & Dying, Life & Living

understanding the suffering associated with dying

Palliative care physician Dr. Mike Harlos gives advice to other palliative care doctors and nurses on how to best support people who are dying, as well as their family members and friends who may be going through the process with them. I love Dr. Harlos’s wisdom and gentle manner, which I have also featured here, and I wish I had known of these videos before I sat by my mother’s side as she took her final breaths.

The thoughts Dr. Harlos shares in the three-minute video below won’t stop the pain of being by the side of someone you love as she or he nears death, but the reflections and advice might alleviate the pain a little; they might ease the suffering overall, and thus allow for a deeper, richer and more meaningful final life experience.

Final hours at the bedside: Is my loved one suffering? from Canadian Virtual Hospice on Vimeo.

Here’s a transcript of the video:

“In palliative care, we don’t treat pain or we don’t treat shortness of breath, we don’t treat nausea; we’re treating suffering. We’re helping people with suffering. Suffering is the total experience related to a certain issue. So the person with pain is experiencing a physical symptom, but there’s also a meaning to that symptom, there’s an emotional context to that symptom, there’s a spiritual context, there’s a cultural context and that whole package is the suffering.

Sometimes the suffering is mostly physical, and sometimes it’s mostly spiritual or emotional or cultural and sometimes it ripples out to others in the room, and you can actually sometimes be aware of the total suffering in a room. So when someone changes, when someone is declining, it’s often seen that this person is suffering, even if they look comfortable. In fact families might say in the same breath “he had a good night, he looks good now, I think you’re on top of the pain,” and there might be a pause and then they might say “how can you let him suffer this way? You would not let an animal suffer this way.”

That sounds contradictory, and how I would try to discuss that is to say “I understand that this is really difficult to be part of and to watch. You’ve just mentioned that he looks comfortable, so I’m wondering, I’m wanting to hear more about what you’re seeing as suffering. Sometimes when people describe that they’re describing the total suffering related to this circumstance and that includes what he’s going through and what you’re going through. And I think he’s comfortable, and I’m wondering how we can help you with what you’re experiencing, which I think is contributing to what you’re feeling as his suffering.”

Also I think what people are describing in that situation isn’t so much his physical comfort, it’s the huge gap between who he was and who he is now. And often in the last few hours of life particularly, there are physical changes that happen that you can’t change. Like people lose weight, their skin colour changes because there is not enough oxygen being circulated, they become cool. And I think it’s important to make a distinction between who this person is in their spirit or in their soul, versus the physical changes that are happening to the shell of that person because people might see those changes and think of it as suffering.

Sometimes even the breathing pattern is changed and it almost looks like they’re struggling for air because they’re taking deep breaths, or periodic breathing, and there’s a gasp, and really what’s happening is that their regulatory centre for breathing is changing and becoming weaker so the breathing is erratic and there’s a long pause, and then there’s a big catch-up breath which then may be seen as he’s “gasping.” So it’s important to be aware that some of those physical changes don’t relate to the experience that the person is having. It’s simply the way the body is changing in a very physiological or biological way.”

Thanks again for this palliative care advice and wisdom, Dr. Harlos.

https://myalzheimersstory.com/2018/02/25/3-wise-thoughts-on-being-with-someone-you-love-as-they-die-which-also-apply-to-being-with-someone-with-dementia-as-they-live/

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Death & Dying, Love, Spirituality

3 wise thoughts on being with someone you love as they die, which also apply to being with someone with dementia as they live

In the three short videos below palliative care physician Dr. Mike Harlos gives advice aimed at other palliative care doctors and nurses. He talks about how to communicate with family members as someone they love approaches death.

But I think there’s something for all of us learn from his gentle wisdom on how to interact with those who find themselves at the side of someone they love as that person dies. It also struck me that what Dr. Harlos says applies equally to people who live with dementia who many others think are “gone” long before the actually are.

In these three short videos (each is less than three minutes long), Dr. Harlos shares simple pieces of practical advice with respect to communication:

  1. Assume they can hear you
  2. Take it out of the room
  3. Make space for final conversations

I invite you to watch and listen, and hope you will be as deeply touched by Dr. Harlos’s words as I was/am. Just listening to his voice at once calmed me, and brought me to tears. As I watched the videos, I  felt as if I were in the presence of an angel, albeit an earthbound one for the moment. I might have made the experience of dying with my mom more beautiful and meaningful had I been exposed to the Canadian Virtual Hospice before her death instead of after.

1 ) Assume they can hear you

Conversations at the bedside: Can my loved one still hear me? from Canadian Virtual Hospice on Vimeo.

2 ) Take it out of the room

Conversations at the bedside: Being mindful of what is said from Canadian Virtual Hospice on Vimeo.

3 ) Make space for final conversations

Giving space for final conversations from Canadian Virtual Hospice on Vimeo.

I wrote a poem about my final moments with my mom; it’s here.

https://myalzheimersstory.com/2018/04/27/understanding-the-suffering-associated-with-dying/

https://myalzheimersstory.com/2016/08/20/dying-with-my-mom/

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