On Finishing My Tenure With Hospice, After Almost 4 Years

The biggest difference between my parent's deaths was the circumstances surrounding them.

My mother died in a hospital in D.C. at 3 in the morning. Her sister was with her, but my father and I were not. She had been in that hospital for 6 weeks, undergoing experimental surgeries for "last hope" patients. Two months before that her regular oncologists in Atlanta told her that there was nothing more they could do for her. They suggested that she go home, that we, as a family, employ hospice. Instead of listening to them, my mother urged my father to find something more, anything more.

We all said that she was fighting, but when I look back it seems more like she was evading. When I think about the last two months of her life, I'm always saddened by how peaceful she wasn't. None of us were. The surgeries she endured, the treatments she tried, they simply destroyed her body further, they broke us all down really. Even if she had lived, it wouldn't have been the kind of life that anyone would want.

And because she kept pushing, because we all kept pushing, none of us ever fully accepted that she was dying. We never really said goodbye.

I was in New Jersey, on my way to her, when she died.

Seven years later when my father was dying, he wanted to do it a different way. I did too. Much like my mother, he reached the end of his medical rope after months of radiation and lengthy hospital stays. At the final meeting with his doctors, when the topic of hospice was broached, they tried to hard to convince us that my father would be best served in a nursing home during his remaining time. My father said nothing; he knew it was ultimately up to me, his 25-year old daughter, to make that decision. I would be the one caring for him.

I'm taking him home, I told the doctors, and I watched tears of relief run down my father's cheeks. I also saw the social worker shake her head with doubt. I knew that whatever misgivings she had about me taking care of my dying father were likely right, but I was determined to give him the death he wanted.

A few days after we got home, a hospice nurse came to the house to do a presentation. She explained the philosophy behind hospice — one that works to ensure that a patient's remaining days are as comfortable and pain-free as possible, and one that works hard to ensure that the whole family is cared for through the process — and my father and I quietly listened to her talk. After she was gone I cried into a pillow in my room so my dad wouldn't hear me. He'd signed all the paperwork she brought and I knew that there was no going back.

In the coming days though, my tears about hospice became ones of gratitude, instead of fear or sadness. That social worker with her disapproving head shake had been right. Caring for my dying father by myself was one of the hardest things I'd ever done. There were dentures to brush, diapers to change, meals to make, 3AM wake-ups to deal with, and medication schedules to adhere to. It was nearly impossible for me to take care of it all.

There is absolutely no way that I could have done it without the hospice team. Nurses came on a regular basis and helped me to make sure that my father was pain-free. CNAs came to bathe my dad and change his catheter and his bedsheets. A social worker came, this one not so scornful, and helped make funeral arrangements. Volunteers came so that I could leave the house for an hour or two at a time, and throughout the entire experience, my father and I both felt cared for and watched over.

He died in his bedroom at 7 in the evening on a Tuesday. I was holding his hand.

All this to say that three days ago I concluded my job as bereavement counselor and volunteer coordinator for Advocate Hospice North in Park Ridge. When I moved to Chicago four years ago, I was fresh out of grad school and could have taken a thousand different routes with my degree. I still remember the night, up late in my first Chicago apartment, when I thought about the hospice team that had cared for my father. I thought, I could do that. 

A simple google search and suddenly I was filling out an application. A week later I had an interview, and by December I had a job. I went on to work for Advocate for three and half years. I had two roles — as the bereavement counselor who followed up with families after the death of the patient, and also as the volunteer coordinator who recruited and trained volunteers and then matched them with families in need.

I met dozens of people who were trying to make the same difficult decisions for their loved ones that my father and I made for each other. I held the hand of patient after patient, counseled countless family members and worked with a team of doctors, nurses and social workers every week to ensure that each family experienced the most peaceful death possible.

I think I'll be processing the experience of this job for a long, long time. It absolutely changed my life, in the most meaningful way possible. I'm so incredibly grateful for everything that hospice gave me, and for everything I gave to it.

12 comments

12 Comments

  • Posted May 16, 2011 at 8:11 am | Permalink

    It always amazes me how the choices we make one day end up having powerful influences on the rest of our lives. Not only has your job affected you, Claire, but you have done the same for the people you have served.

  • Posted May 16, 2011 at 11:51 am | Permalink

    You have touched many lives through your work and your words. You can be proud of your contribution to the world already at such a young age. Many people wish at making a difference in the world and you have actually done it.

  • Posted May 16, 2011 at 12:20 pm | Permalink

    My daughter was in her early 20’s and kept her dad at home who was dying of lung cancer. Everything you described is so familiar. She was upstairs folding laundry when he passed and later waiting for the funeral home to come, she was holding his hand. When I asked why, she said, I don’t want him to be alone.
    The volunteers from hospice brought chocolate chip cookies and my son who was exhausted days before dad passed, said “mom, these are the best cookies I ever had.”
    Thanks for what you did during your time here, Claire, even though I have never met you. Good luck in LA.

  • Posted May 16, 2011 at 4:47 pm | Permalink

    Aw, what a nice sharing of your daughters experience. Sounds like it was a good one. Thank you for your kind words.

  • Posted May 16, 2011 at 4:47 pm | Permalink

    Wow, thank you so much!

  • Posted May 16, 2011 at 4:48 pm | Permalink

    Thank you, Tony! I know youve done the same!

  • Posted May 18, 2011 at 12:49 am | Permalink

    I watched and helped my mother take care of my grandparents in home, and then eventually in a nursing home. I think you are amazing.

  • Posted May 18, 2011 at 11:51 am | Permalink

    Oh, thank you.

  • Amanda
    Posted May 20, 2011 at 12:23 pm | Permalink

    I came across your blog today somehow through the page of a page… you know.
    Anyway, my parents both passed away this year, my dad in December and my mom on April 18th and today I very lost but knowing that there is someone else out there who has lost their parents helps.
    I’m a little older than you at 43 but no less sad. And it’s so hard to think that the last time I saw both my parents was just that, the last time.

  • Posted May 22, 2011 at 11:49 am | Permalink

    Oh, Im so sorry to hear about your parents. Its so hard. If youre interested, theres a great book that came out this year called Parentless Parents by Alison Gilbert. You should check it out.

  • antonia
    Posted June 26, 2011 at 6:41 am | Permalink

    Claire – I’ve always read your entries with knowledge that I may be in this space space one day – this entry was both moving and confirming that my mothers death was on her own terms and hospice made it possible. Thank you for what you do, and for describing it here

  • Posted June 28, 2011 at 12:37 pm | Permalink

    You’re welcome, Antonia! I’m just so sorry that you found yourself in this experience as well. I’d love to talk so you soon. Thinking of you lots.

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