If your parent has entered palliative or hospice care, your family will have to face the hard reality that end of life is only a few months or even a few weeks away. As difficult as this realization is, it’s important to give meaning to the end-of-life period with special conversations, shared experiences, and making the most of every remaining moment your loved one has.
I speak from experience on this topic. My 90-year-old mother had COPD, and on August 31, 2017, my siblings and I received the news from her pulmonary doctor that nothing more they could be done to treat her illness. The doctor recommended hospice care.
Many people are confused about when and if hospice is appropriate. The guideline for recommending hospice is the expectation that the patient has six months or less to live. But the uncertainty of just how much time remains is stressful on the family. Having gone through that experience, let me offer the following advice and encouragement for other families facing the same circumstances.
1. Make full use of hospice resources.
Hospice is available to enhance the quality of life for you loved one, whether at home or in a skilled nursing facility, so being receptive to hospice care can provide considerable comfort and ease your parent’s pain. In our mother’s case, hospice treated her infection and recurring bouts of pneumonia. Hospice also provided her with a quality hospital bed, daily medical care, and a personal care routine that included foot massages and whirlpool bath several times a week. All of that ensured that she had a better quality of life in her final weeks.
2. Be prepared to make difficult choices.
Though we had hoped to have our mother continue living with my sister, it soon became apparent that a move to a skilled nursing facility was the best option. Due to her worsening lung condition, our mother had been to the emergency three times in a two-month span. That was a stressful experience for everyone, and we realized that 24/7 professional care would be the best way to manage her medical condition. Even now, guilt creeps into our minds that perhaps we should have found a better solution, but at the time, it was a logical decision and we fight against letting hindsight cause us to second-guess ourselves.
3. Make your visits special.
Visit as often as possible, and be fully engaged during every single visit. Put away that cell phone. Hold your parent’s hand. Give a hug. Share a story. Share a meal. Ask your parent to share a story with you. Watch a movie or a TV program together. Go through old photo albums together. Bring your children and grandchildren to visit as well. Do whatever you can to make your interactions with your parent meaningful. And every time you say good-bye, make sure you say “I love you.” You may never know if you’ll get a chance to say it again.
4. Let your parent set the tone of conversations.
It’s often difficult to know what to talk about in an individual’s final weeks. You don’t have to talk about end-of-life unless your mom or dad wants to. However, always make sure they know you care by asking how they are feeling and inquiring if there is anything you can do to make them more comfortable. Let them know how much you appreciate them. It’s okay to cry together, but it’s also okay to laugh.
5. Focus on living until the end.
During the last few weeks of my mom’s life, we never treated the time as if we were expecting her to die. Every day, we focused on helping her get the most of her remaining time—making sure she was pain-free, that she was eating well, and doing something enjoyable with her day. She was wheelchair-bound, but never bedridden. She was able to get around, and on her pain-free days, she was able to play bingo or poker with the other residents, eat meals with friends she had made in the dining hall, and she even was well enough to go to a casino on a couple occasions with my sister and her husband.
She also had a major event to look forward to—her grandson’s wedding. That turned out to be a wonderful day. She was wearing a brand-new dress, and she looked beautiful. She posed for pictures with her children, grandchildren, and great-grandchildren. She was having such a fabulous time that she didn’t want to leave. Having that wedding to look forward to was extremely important to her. As the wedding reception was coming to a close, we already started talking about our get-together for the holidays, even though Christmas was still two-and-a-half months away. We wanted her to know that we hadn’t given up on her.
6. Death may not come when or how you expect.
Even when you are prepared for a parent’s death, you can never be sure exactly when or how it will occur. For four days, my mother was living in the after-glow of the wedding—telling everyone who visited or called how wonderful it was. On the fifth day after the wedding, we received the call we had been dreading. We were told she was unresponsive, and by the time my sister reached her, she had died of a heart attack. Though we knew her time was coming, the way it came was a shock. It was October 13, 2017, six weeks to the day after her doctor recommended she go on hospice care.
7. Don’t second-guess yourself.
We weren’t there when our mother died, and it’s hard to know how to feel about that. My brother-in-law said that she had told him in a private moment that she wasn’t afraid of dying but she was worried about how it would affect her children. That was our mother, thinking of others more than herself even at the end. I’d like to think she died the way she preferred, without lying in bed as part of a slow, agonizing decline and having to see us at her bedside with sorrow in our eyes. My mother didn’t get to choose how she died, but being surrounded by loved ones at a joyous family occasion during the last week of her life was probably the best way she could have imagined.
8. Take care of yourself.
As you face the end of your parent’s life, don’t neglect taking care of yourself. Lean on siblings, your significant other, your children, and friends for support. If hospice or other care providers lend emotional comfort, before or after your parent’s death, take advantage of those resources as you need them. As much as you love your parent, your parent loves you that much and more. Your mom or dad will want to know that you’ll be okay, and offering that assurance will be so meaningful to them in their final days.
CHIME IN: What are your thoughts, concerns, and/or recommendations regarding hospice and end-of-life care?