Years ago, on my first day on the ward of a hospice facility, an elderly woman named Cecilia arrived. The nurses told me she had dementia, was incapable of speaking, and because she couldn’t understand anything people around her were saying, there was no reason to talk to her.
I entered her room and sat down next to her. Because I’d seen a film called “Peege,” when I was an undergraduate student, I knew that people with dementia might respond well when they are spoken to directly. I wanted to treat her with respect so I introduced myself. “Hi, I’m Ginni,” I said, and asked if I could hold her hand and sit with her for a while.
“Yes, Ginni. I’d like that,” she replied.
Not only was I delighted to hear her voice, I was surprised that she’d heard my name and pronounced it correctly since most people think I’ve said Jenny or Jeanie when I first introduce myself. This moment went against everything the nurses had assumed would happen. It’s likely that they’d told other people coming into contact with Cecilia the same thing they’d told me thus setting her up for encounters filled with silence.
Hearing her speak informed my understanding of what she was actually experiencing. Clearly, she could hear and process information in some way. And her smile made me think she was happy — perhaps even deeply moved — to be making both a verbal and a physical connection.
And so I sat with her, held her hand, and had the honor of being the last face she saw before the light went out in her eyes and she was gone.
In facing the last hours or moments with a loved one, we can never be fully prepared for what will happen. And sometimes practical concerns — how to manage our loved one’s pain, whether she’s a in a comfortable position, and even dealing with paperwork — may distract us from what’s actually occurring. In today’s hospital environment, we may also be so preoccupied with measures intended to prolong life for as long or as short a time as possible, that we miss cues about what our loved one truly wishes. All the while, we’re struggling with our own feelings about the reality of death and asking ourselves a thousand questions about how best to comfort and care for our loved one in his final hours.
How, then, can we give the right emotional care at such an overwhelming time — especially to somebody who, like Cecilia, can’t communicate well, if at all, or has been labeled in a way that shapes how others interact with her?
From my own experience aiding families during this complex time and accompanying my own mother on her end-of-life journey, I’ve identified 4 important steps that will take some of the guesswork out of those final moments so we can help our loved one in a way that truly is comforting.
1. Ask the tough questions ahead of time
Our own assumptions regarding the people we care about and our fears around an impending loss may cloud our judgment as to what a loved one wants in his last days. It’s even possible that he or she doesn’t know what he/she wants, having never considered this before.
Nobody likes to talk about death and dying. There’s a prevailing tendency in our otherwise expressive culture to avoid the topic altogether. Some people feel it is insensitive, inappropriate and downright terrifying. But how will we know what a person really wants unless we ask in advance? Assuming you’ve already discussed end-of-life medical care and your loved one has an Advanced Care Directive, some of the tough questions I advise raising before they become relevant are:
- Where do you want to die?
- Who do you want present when the time comes?
- Who do you NOT want present?
- Ideally, what would you like those around you to do during your final moments?
Does this mean you can make their wishes the reality of the situation? Not necessarily because medical interventions may move things in an unanticipated direction. It does mean that you will have an idea of what your loved one prefers so you can do your best to incorporate that vision into their final moments.
2. Create a pleasant, soothing atmosphere
Amid the emotional upheaval of life’s last moments, it can be easy to forget the simple pleasures that will make those moments peaceful. But these will make an immense difference for everyone involved. They include:
Hearing is the last sense to go at the very end of our lives. Even the hearing-impaired can feel the vibrations of music and detect its rhythm.
If possible, well in advance of any medical emergency, ask your loved one about her favorite music and create a playlist. When the time comes, you can fill the room with the songs she loves, some of which might be nostalgic, uplifting, or reaffirming of faith. Music can also help if your own words are scarce or difficult to find. I sang John Denver’s “Perhaps Love” to my mother because those profound words of love expressed the depth and ongoing love I would have for her the rest of my life.
Like sound, scent can elicit memories, good or bad. Though it may seem trivial in the scope of things, aromas can transform an experience for the better or for the worse. Some people are highly sensitive to certain scents, which can also trigger emotionally charged memories.
If possible, ask your loved one in advance if there are scents she loves — or hates. If time doesn’t allow for that level of preparation, simply avoid wearing any perfumes, lotions or other fragranced products because he or she may find them irritating.
If possible, ask, too, whether your loved one will feel most comfortable in bright light, dim light or very little light at all. When in doubt, opt for soothing, dim lighting.
3. Reassure your loved one that you’ll be okay
No matter how you’re actually feeling it’s important to reassure your loved one that you will be okay. Ultimately, you will be. The dying can be very sensitive to and protective of their loved ones needs. If loved ones refuse to accept the reality of the situation and won’t let go, the dying person may hold onto life despite being in excruciating pain or being ready to die.
But if you tell them, once, “You can go,” it’ll be easier for them to do so. No need to repeat it: this phrase is very powerful. Once you’ve said it, you can add, “I’ll miss you,” “I’ll always love you,” and, “I’ll be okay.”
This is what I said to my own mother when she was dying, even though inside I felt as though I would never be okay again. Eventually, I was okay because I knew I had honored her wishes and she died peacefully.
3. Let go of preconceived notions
Once you have outlined what you can do to help your loved one, remember to be flexible and open to whatever unfolds before you. Like in Cecilia’s story, it’s crucial to release assumptions that might be shaping the way we think about our loved one or her death when the moment is upon us. Even if she has been diagnosed with Alzheimer’s or dementia or seems generally unresponsive, unless she’s deaf, she still hears you and might be able to respond to what you say. Refrain from making comments that you wouldn’t want her to hear no matter how certain you feel that she’s not taking anything in. She just might surprise you.
The last moments of life are precious. We can’t predict when death happens nor can we control fate. But we have the power and the responsibility to consider the courses of action we can take to add quality in those final moments.
Virginia A. Simpson, Ph.D., FT, is a bereavement care specialist and Executive Counseling Director for hundreds of funeral homes throughout the United States and Canada. She is also founder of The Mourning Star Center for grieving children and their families and author of the memoir The Space Between: A Memoir of Mother-Daughter Love At The End of Life. (She Writes Press, April 2016)