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As I write this, a dear elderly friend may be taking her last breaths in the bed of a nursing home 30 miles from here. Bernice and I bonded like super-glue nine years ago when her son, who is now my favorite ex-husband, brought me home to meet his mother. You know how sometimes you meet someone and you just KNOW them ... how they think, how they react, how they feel ... with no need for words? That was me and Bernice.
When her son and I divorced, it was friendly, and had no impact whatsoever on our relationship. She and I shared an understanding - friends for life, no matter what.
For years I would drive out to her country home to visit her every other week. We'd laugh and pay bills and take care of business and eat lunch together. Early one morning a few months ago, her legs just collapsed right out from under her and she fell, hitting her head. When her home health aid found her, she had been lying there for at least 2 hours, blood seeping slowly from the cut on her scalp, body too weak to make itself get up.
After the hospital stitched her up, it was clear that she could not go home again. So when she set up a new headquarters at the nursing home, I started visiting her almost every day.
We would still laugh and take care of business together - but business became what was for lunch today, and what would she wear tomorrow, and scheduling her appointment at the in-house beauty salon because she did not have the energy to keep doing her own hair so she wanted a perm.
I watched as the weeks passed and she gradually declined. I'll spare you the details. I have learned a few things from this experience that I think might be important to share, so here they are in no particular order.
1.) Little things matter. Smooth the sheets, fluff the pillow, fold the blankets. Bring a small treat or a flower from your garden or a sample-size hand lotion. Share pictures or a funny story. Bernice loved to hear about life outside in the world, no matter how trivial.
2.) Ask what they need. The remote or phone might need to be relocated within easy reach. The clip on the call button was too hard for her to squeeze, so she would hold it in her tense hand like a vice-grip until someone clipped it to her pillow. Sometimes she wanted me to comb her hair or trim her nails or take her out on the deck for some sunshine and fresh air. I'm not sure she would have felt comfortable outright requesting those things if I had not asked what I could do for her.
3.) The TV is often their only link to anything in the real world. That dang television remote would give her fits all the time - so many small buttons, and her arthritic fingers would hit too many at once. (note to some inventor out there - can you whip up a remote that only has power, channel, and volume, with BIG colorcoded buttons that elderly folks can easily see and push?)
4.) Help does not always come when you push the little button at the bed. So many patients, so little staff. Push the one in the bathroom if possible for a quicker response.
5.) Pain medication works best when it is maintaining relief, rather than starting from scratch. Ask for pain meds BEFORE the pain gets bad. Make sure they take the regular dose at the regular time whether they think they need it or not. It's easier to keep up with the momentum of relief than trying to get pain back under control after the meds have worn off.
6.) Stay with them for meals sometimes. Get to know the other residents, grease the wheels of conversation, look for common ground, and help to plant the seeds of friendships. It's easier for them if you are the one to break the ice.
7.) Get to know the family members of the other residents. My first dinner there I met the daughter of another resident, and we agreed to keep tabs on each other's moms.
8.) And of course, get to know the staff! Learn their names, ask about their weekend and their family. Nursing home staff members are so overworked and underpaid it is almost obscene. They deserve nothing but our gratitude and empathy. They have hearts of gold and an undeniable calling to serve, or they would be working somewhere, anywhere, else. A smile or touch of thanks counts for so much. Be as kind and gracious as you can to them. They hold your loved one in their hands in so many ways.
9.) Please do not ever tell a loved one that their decision to enter hospice or stop interventions is a sin or a mistake! Their life is their domain. Your life is yours. The last thing a terminal patient needs is to be judged or criticized for reaching their personal limit. Please do whatever it takes to reach a place where you can honestly tell them that you love and support them in making whatever decision they think is best for them.
10.) If your loved one has six months or less to live, I have three words for you. Hospice, hospice, hospice. I cannot say it enough. They know pain control and comfort measures like no one else. They can move mountains on behalf of their clients, and they assist the regular caregivers. Everyone benefits. Please.
11.) Life is not as fragile as we sometimes think. It can take a while for the body to get the memo that the heart and soul are ready to let go. Cultivate patience.
12.) Make plans now, before anything happens to you. Take care of your family by having a will, designating a person to make medical decisions for you with durable power of attorney for health care, setting up a trust, etc. Grief alone is enough to deal with. Spare your family from also having to make a bunch of decisions that you could have taken care of ahead of time. Bernice and her husband Walter planned every detail of their memorial services ahead of time, right down to the hymns and the flowers. We can simply honor their wishes. What a gift.
13.) Let them go in peace. Don't cling to them in fear or insecurity. Release them, and let them know they have earned a deep rest, and that you will be okay.
14.) At the end of your life, it comes down to only you. As much her family and I love her, we simply cannot be there all the time to keep her company. I think it's a worthwhile investment of time and energy when you are young and healthy to make peace with solitude, and cultivate some kind of relationship with your concept of a higher or deeper power. We come in alone, and go out alone. It is helpful if alone feels good.
15.) You can't take any of it with you. It all goes. At this point, a tiny morsel of her personality glimmers in her eyes when they flutter open ever-so-briefly , but she is hardly recognizable. Her body has melted away, leaving just a wrinkled bag of skin and bones. Death is the great leveler, and being in such close daily proximity with it reminds me that this is all temporary anyway, and that it is a waste of time and energy to get too worked up over anything.
16.) Touch matters. It reminds us that we are still have a body, and that we can make contact with other bodies. Bernice calms right down when someone holds her hand.
17.) Sound matters. It is often the last sense to retreat, so they know you are there by your voice long after they can acknowledge you. Keep talking to them. Don't say anything in front of them that you don't want them to hear. When you run out of words, sing. You know what will comfort them ... hymns, chants, even pop songs. It is the tenderness in your voice that they will hear and understand.
18.) Love matters. In the end, it's the only thing that remains. When I showed up a couple days ago Bernice grabbed for my hand in great distress, telling me that someone needed to show her the way home. I told her to look for Jesus and her husband Walter. She protested that she HAD been looking, and she could not see them anywhere. I suggested she look with her heart, not her eyes. She found them that way, and relaxed into sleep once more.
19.) You matter. Your presence matters. To them, and to you. Spend time at their bedside, even if it seems they do not know you are there. They do. And you will face no regrets later.
20.) And even if you cannot be there, your thoughts and prayers matter. Scientists are becoming aware of what mystics have known for ages ... at the core, we are all one. Physical presence is not a prerequisite for connection. Tender thoughts and heartfelt prayers are never in vain. In fact, I suspect that being at the bedside feels so satisfying in part because it eliminates distractions and allows us to devote our full attention to our loved one. But we can choose consciously to focus our attention on them anytime, anywhere. Attention and intention are extremely powerful.
Life and death are mysteries. I don't know that any of us will ever fully understand them, nor am I sure that we are meant to. But what I do know is that something goes on after the body is put to rest. Today Bernice could no longer speak coherently to me. The last clear communication we had was when I leaned over to kiss her goodbye on Saturday night, and I told her I would see her the day after tomorrow. She smiled and squeezed my hand and said, "Well, if I'm not here, don't worry. I'll find you."
And I have no doubt whatsoever that she will.
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