Grief is a sacred journey

I Will Help You: Palliative Care Support Before Hospice

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Tinker and Virginia on a hard day

I asked my mother-in-law’s doctor to order a palliative care consultation when we saw him a few weeks ago. Our local Hospicare has a program called PATH (Personal Attention to Health). I was desperate for help and advice. Her doctor said yes.

Virginia was drowsy and couldn’t stay awake on consultation morning. She’s spent more time like that the last month, but has a few perky afternoon hours most days. A third mode is wild anxiety which exhausts her and everyone.

There was a knock on the apartment door. A young woman swept in like a gust of cool wind in an overheated room, like a beam of light in a dark cave. She wore a flowing black and white top and a huge smile.

I moved toward the door to greet her as she entered. “Tinker?” she asked.

“No, I’m Elaine,” I said, “Virginia’s daughter-in-law and health proxy. I requested the consultation.” Tinker is Virginia’s primary health aide who oversees daily care and organizes a team of five aides.

“I’m here for our palliative care consultation. I’m so glad you called,” the nurse said, beaming as though I’d done something remarkable. In some ways, I had. We usually delay calling hospice until it’s too late to significantly improve a patient’s last months. Most people avoid considering death at all, but I’ve been caring for Virginia for ten years, so she has a Living Will, a DNR, and MOLST (Medical Orders for Life-Sustaining Treatments) form requesting no heroic treatment.

Virginia is, after all, 101.

Tinker, the nurse, and I talked while Virginia dozed. What about her symptoms? I answered, but collaborated with Tinker who is with Virginia five days a week and watches over her like a mom. What about medications? Tinker pulled the pills out of the drawer, showed the nurse her orderly system, and went through every medication—surprisingly few.

Virginia with her best buddy Willow in 2016

As she and Tinker discussed medication, I watched the nurse’s dark flashing eyes and “we-can-do-this” energy. Her body was supple and strong, someone to lean into. She spoke quietly to Virginia while giving a gentle physical exam for baseline blood pressure, pulse, and temperature. She already had a medical history from the doctor’s office.

As we stood at the kitchen counter to complete the paperwork, the nurse offered suggestions. “A transport chair would be easier to handle than the wheel chair since Virginia doesn’t propel herself.” By afternoon, Tinker had called the Finger Lakes Independence Center and arranged to exchange the wheelchair for a transport chair.

Virginia with her neighbor’s guinea pig, April 2017

“She might benefit from small changes in medication,” she said, “but I’ll call her doctor to ask. I can’t prescribe, but I can make suggestions. One other thing. I want you to know you’re doing a great job.”

“I couldn’t do it without Tinker and the other aides,” I said.

So many elderly live with loneliness and neglect. I understand why. It takes a team to keep Virginia in her apartment.

“You have a great set-up,” the nurse said looking around the apartment. “A hospital bed, a walker, a lift chair, a team of reliable aides, and resources to keep this going a while longer.”

“I know,” I said, “but we’re all exhausted and anxious.”

“I will help you,” the nurse said.

I will help you.

Willow who has known Virginia since she was a pup is worried about Grandma

I clutched those words and held on. Virginia doesn’t fight me every step of the way as she once did and she stopped blaming me for her son’s death, but I’m tired and in over my head making decisions I don’t know how to make. Tylenol or Advil for pain after a fall? Does she need a doctor or is she OK? How do we save her from the medical invasion so many endure? How do we make her as comfortable as possible?

In the Hospicare garden

“I’ll be her case manager for palliative care and later for hospice,” the nurse said. “I’ll check her for changes once a month until you need more, but I’m here to help you. Call me if you have questions. Call if you need me.”

“I will help you.” Words more precious than gold.

***

So now you know a little more about why I love Hospicare and have volunteered there since 2009. As Virginia declines, she’ll be eligible for more hospice support, including volunteers and the residence if we need it. Despite her age, Virginia doesn’t have the six-month life expectancy required to be a Hospice patient. She’s remarkably healthy in many ways, but there’s been a recent decline both mentally and physically. For other articles about my mother-in-law, see My Lover’s Mama and the Negative Mother Archetype or When Forgiveness Requires Patience.

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30 Comments
  1. Blessings to you, dear Elaine, and thank you for telling your personal story of caregiving. I am grateful that you’ve surrounded your mother-in-law with such exquisite care, and given yourself the support that palliative care provides. Yours is such an important message, and one I intend to share. ♥

    • Thank you, Marty. I write this because of past experience of not having palliative care support available for my husband and, more recently, not being able to persuade my brother’s family to call for help even though he was registered with palliative care. I’ve learned from hospice volunteering and sites such as your wonderful Grief Healing to find out what’s available. Each state is different. Each hospice is different. But if we ask, help may be available before a patient is on hospice care. My mother-in-law’s decline has been long, slow, and exhausting for all. I’m grateful for expert and compassionate support.

  2. Perfect, Elaine! You say this so well. Palliative care to keep someone as comfortable as possible before hospice time. We did that with my dad, too, and it made a big difference. And when he qualified for hospice, we set that up, with the agreement that if he was doing better later on, we could take him off of hospice.

    • I’m glad you did, Mark. Thanks for your kind words. It’s up to the family to call and ask, but sometimes people are afraid to make that call even though it’s obvious the person they love is declining. And our doctors don’t always help us make the decision early enough. Even though Virginia is 101, her doctor didn’t suggest palliative care. I had to suggest it. I hope this article will help more people make those calls. We’re also set up to slide over to more hospice support in the future–and now we have a nurse to help us decide the timing.

  3. Dear Elaine, This is a wonderful article, and a joy to read! You’re doing such an incredible job in helping to keep Virginia in her own apartment, where daily she continues to be surrounded by familiarity, comfort and love. I’m not surprised that it takes a whole team to keep this kind of care going. Hospicare sound great! Providing their patients with much needed physical, emotional and spiritual comfort. I enjoyed reading about their illuminated gardens with a lighted canoe gliding across the pond … while the trumpeters play! What an amazing evening that must be. I imagine it’s deeply rewarding to be a volunteer with them.

    What treasures Tinker and the nurse sound! How wonderful that they view our world with love, and are both here to create that space of love and trust for many. Hearts have more power than we can imagine! It’s always wonderful to see more photos and great that you’re bringing these hours to life with your pen. Recently I read, at the end of our lives when we look in the cosmic mirror two questions always surface … the first, “How much did we love? And then, “How strong was our love?” You write with an open heart my dear friend, you affect, and infect us all with your heartbeat and breath. Much love and light, Deborah.

    • Deborah, volunteering with hospice is one of the best things I do. Our hospice has wonderful community support and volunteers are welcomed as part of the team. I volunteer in the office as well as in bereavement right now. I’ll work with the dying later, but with Virginia, I have my long-term patient to support.

      Yes, hearts have more power than we can imagine. I love how you say these things. All the health aides are loving. Tinker keeps an orderly ship, but she also draws loving helpers which is more important to me. Virginia’s neighbors in her building also provide love and support. That little guinea pig is a wonderful therapy animal. And of course, Willow.

      At the end of Vic’s life, not much mattered except Love. The books and articles he wrote (with love), the students whose lives he touched, the kindness and affection he showed his sons and me, his kind actions at the hardest times–that was what mattered. Thank you for your loving support, Deborah, in so many ways.

  4. Very touching and helpful, Thanks!
    Michael

  5. I’m so glad you’re getting the support and help you need, Elaine. I love Hospicare too, having been through the deaths of two loved ones with differing amounts of support. Thanks for the video of Hospicare. I hadn’t see that one before and it’s lovely. And the photos of Virginia with the guinea pig, with Willow – for some reason, seeing her near the end of her life, hanging onto these creatures so warm and full of life – they are too precious. Too beautiful. And real.

    • Thank you, Robin. I’m glad, too. When Virginia is scared, her neighbor puts that little guinea pig on Virginia’s lap. The calming effect is immediate. I have a photo of the little guinea on Virginia’s lap with Willow lying at her feet. Willow gets along well with the guinea pig. The owner puts the little critter on Willow’s back for a ride. Yikes! Willow doesn’t seem to mind. Who can figure out these animal friendships? We only know these two are good therapy support when nothing else soothes.

  6. How special are those words – I will help you. In a way a reminder for each of us to help when we can. Thank you for sharing this Elaine, may Tinker and the new nurse be a great help to both you and Virginia.

    • Thank you, Susan. I already feel helped. I wrote this because I know so many who don’t get available help at end of life. It never hurts to call and ask. It never hurts to nudge a doctor to do what’s obvious. And it always helps to hear “I will help you,” and know the person means it and can help.

      • As always, it’s lovely to come back and see others’ comments and your responses to them Elaine. Thank you and them. Many years ago I was a hospice volunteer – in fact I remember the day getting ready to leave home for my evening at hospice a fair way away; it was at about 3.00 p.m. our side – and the news came on the radio – it was Sept 11, 2001. I saw the TV news and was horrified. I remember driving in the traffic, feeling numbed, glued to the radio as were all other drivers and getting to my destination and feeling a strangeness and a dislocation about violent deaths and peaceful deaths … many of the patients were HIV positive, yet they were surrounded by loving staff. My friend who died 2 months ago was a medical doctor offering palliative & pain management care at that particular hospice .. …

        • Thank you for writing about your experience, Susan, and that intense memory of 9/11 with your hospice initiation. Quite a synchronicity. Being involved with hospice is one of the most rewarding things I do. You provided that kind of witnessing and love for your friend. It’s a precious gift.

  7. Love, respect and admiration. My life is better because I know you sweet lady. Much love.

    Susanne

    • Thank you, Susanne. I’m usually too self-critical, but I’ve done a good job with my husband’s mother. My difficult relationship with her forced me to wrestle with my own Negative Mother complex. I had to forgive her for harsh treatment when I was young, forgive myself for resenting her, and make it work–or else carry my dark feelings to my own grave. I’m glad I stuck it out.

  8. Thank you for sharing this story. It is lovely to read a story of kindness and care.
    I would that all those going through this labour of birthing Self out of the body were coached and loved as gently as Virginia. I wonder, the people for whom you provide care at the hospice, do they typically have dreams or see visions of the loved ones who have gone before? I have heard it is normal to have those visions in the days leading up to departure.

    • Thanks for reading and commenting, Norma. Virginia is very fortunate and I’ve learned a lot from her in our long relationship. I don’t know if she dreams now. Much of what she says seems to come from a dream-like or dream state. A few years ago, she dreamed of her son Vic occasionally, but couldn’t remember details.

      Before his death last year, my brother had fascinating visionary dreams (a man who was a materialist and not much interested in the inner life) of huge celebrations in India (one of the few places he’d never been, but I remembered the joyous and emotional funeral ritual I’d been involved with in India). He also dreamed of me coming across a great body of water and passing through a border to get to him. My husband had a few short strong dreams right before his death–one spoke of his Tibetan connections and the other, his last dream, was that the Spanish king had died and he didn’t know about it yet. He was too sick to discuss the dream, but I had an interesting discussion with Jungian Robert Bosnak about it and this helped me feel Psyche or Self was guiding the whole process.

  9. My wife — roughly 45 days filled with pain between DX and death — and myself were tortured by invasive medical procedures and lack of care or caring. And, I do not use torture loosely. We were sent to palliative care from the emergency room. We both asked why as we did not understand, did not know what palliative care was. The doctor must have felt challenged and show back as he scurried of, white coat flapping, “you won’t be alive 10 days from now.” Death had never been mentioned before that moment. But, we were used to that sort of thing by then or as used to it as you get. When we got to the palliative care unit everything changed. It was still a difficult time but now we were surrounded by kindness and caring. Hospice came briefly later and was also wonderful. Had I known, had I known, had I known? Thank you for this post and others. The more who know and understand before it’s too late the better.

    • Oh, William, what a heart-breaking experience. I can’t imagine how traumatizing this was for you and your wife. I, too, saw things that can only be described as torture. I’m glad your wife had you at her side, but it sounds like there could have been another way if someone had stepped in to help and inform. You had no time to adjust to the devastating diagnosis and your wife’s suffering, and it sounds as though neither of you got loving care from medical people. It would take heart-training to change this callous behavior in doctors, but so many are trained as technicians. It sounds like you ran into a particularly heartless team.

      Most of us don’t know anything about palliative care. I didn’t know when my husband was dying, although I knew about hospice. Because he was still undergoing chemotherapy, palliative care wouldn’t have been an option–this is the law in the United States but not in many other countries. When the last chemo failed and his lungs failed, hospice came in for the last few days. They were wonderful, but too late to help as much as they might have. “Had I known, had I known, had I known?” The griever’s lament.

      I began volunteering at hospice 8 years ago and learned a lot about what they offer and how little I knew because we keep death hidden. I wrote this piece from a place of not knowing what to expect from a palliative care consultation and having a reassuring experience. I hope a few people will read it before they get to those last decisions so they can get help the dying ones earlier. I’m grateful you took time to comment and share your experience. You help others by discussing the truth rather than veiling it in secrecy. Thank you.

  10. Thank you for your kind reply. Yes, the more who know before the better. And “had I known” on so many levels.

    • I look at life as a series of lessons. I don’t know until I’m taught and there’s always more to learn. I wonder if anything can prepare us for the death of someone with whom we’re deeply connected.

  11. Elaine, this is beautifully written and inspiring. You are a strong, compassionate woman. *hug

  12. You are certainly one of earth’s angels Elaine. You are a wonderful example of humanity, compassion and care. Virginia has been blessed to have you all these years. <3

    • I don’t feel a bit angelic, Debby. I spent lots of years resenting Virginia. I agree she’s lucky I stuck around, but the other choice was to walk away with my resentment and top it off with guilt. Life is complicated, isn’t it? I wonder if she’ll outlast me.

      • We often don’t give ourselves enough credit. Your support and care for her are what count now. And heaven help her if she outlast you. Not going to happen. 🙂

  13. Once again you inspire me, Elaine. Thank you for sharing this article. We do need to spread the word about palliative care in our country. There are still so many who have not even heard of the term. Sending virtual hugs to you.

    • Thank you, Anne. We do need to spread the word and talk about palliative care. People don’t understand how wonderful it is to have someone arrive with the primary goal of relieving suffering. W’re afraid that asking for palliative care or hospice support means we’ve given up on the person we love when it actually means that we’re doing everything in our power to protect them.

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