How Do We Love Well At The End?

(Joe Musso is the Chair of Ashcraft & Gerel’s Nursing Home Abuse and Neglect Litigation Department. He has devoted his entire career to holding nursing homes and assisted living facilities responsible for the abuse and neglect of the elderly.  He is the Chair of the Virginia Trial Lawyers Long Term Care Section and member of the Maryland Association of Justice Nursing Home Litigation Group, the American Association Of Justice Nursing Home Litigation Group and is a member of the National Consumer Voice, the leading advocacy organization for the protection of the institutionalized elderly.)

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“The day the roles reverse is foreign. It’s a clumsy dance of love and responsibility, not wanting to cross any lines of respect. It’s honoring this person who gave their life to you – not to mention literally gave you life – and taking their fragile body in your hands like a newborn, tending to their every need.” – Lisa Goich-Andreadis

I have been a nursing home abuse and neglect attorney for a quarter of a century. That is difficult to believe even as I type it. Every week for 25 years I have sat across from families who have lost loved ones in nursing homes. By far the most common scenario in my world are the adult children who have lost an elderly parent in the nursing home. In almost every case their loved one died at a “ripe old age”. Certainly, they all lost their parent well after I lost my father (age 59). Yet they are still devastated. There seems to be little solace to my clients that their parents long outlived their actuarial life expectancy. I’ve come to conclude that losing a parent at any age is like losing a part of oneself. There is a tearing at the fabric of our reality when the people who once cared for us, at our most vulnerable stage of life, leave us in this world with only their memory. For many of us we more sharply come to realize that we, as the surviving parents to our children, are moving into the spot left vacant by our deceased parent. We reluctantly, almost always feeling ill-equipped to do so, take the position of matriarch or patriarch of our family. Of course, this is all very emotional. It should be. But what always surprises me is how heartbroken these families are, with what they perceive to be their own failures to love well, at the end of their parent’s life.

In my experience, nothing seems to aggravate and exacerbate grief more than guilt and regret. In my world that often comes in the form of a family anguished by the reality that they chose and trusted the nursing home that abused or neglected their loved one. However, over the years, I have seen many other regrets of the living. I have seen regrets that are not exclusive to the abused or neglected. I have seen guilt and regret that we can all be on the lookout for as we care for and love our own parents in a nursing home. Here are the 5 regrets that my clients have expressed the most over the 25 years of representing them:

#1: They were so focused on advocating for care and preventing harm that they neglected connection, comfort, and expressing love during their visits.

I teach advocacy. I have written, taught, and coached about advocating for your loved ones in a nursing home for decades. I teach that “the squeaky wheel gets the oil” and in a world of limited resources, it is the resident whose family is paying attention that will get those resources. I tell my students to create a journal, ask questions, get names, document everything, rotate visitations, attend care plan conferences, and join family councils in the nursing home. I believe we should be incredibly active at the nursing home if we want our loved one to be cared for in an optimal way. Like the parent who is always at the school, involved in the PTA and never misses a parent teacher conference – advocacy is both effective and time consuming when done correctly. However, visitation must be more than trying to catch the nursing home staff screwing up. Visitation cannot be about the facility alone. In fact, visitation should not be primarily about the nursing home care being provided! Visitation at a nursing home should be first and foremost about love, connection, and comfort for your parent.

How to best visit a loved one in a nursing home is largely dependent on the condition of the resident. Nonetheless, there are some common strategies that can be tailored to just about any situation.

• Share – We can and should share our stories with our loved ones despite any cognitive issues that may be present. Stories about the past. Stories about the kids. Stories about great memories. Stories about what happened today. Stories about what is on the horizon. Sharing stories and discussing events is often craved by the elderly in nursing homes. Share, share share!!
• Touch – I am amazed at how people who desperately crave touch themselves assume that their elderly parent in a nursing home don’t. Touch your loved one. A gentle caress or kiss on the forehead when you enter the room. Holding a hand as you discuss the day. A hand on the shoulder as you push the wheelchair. A hug. These gentle gestures of affection are invaluable to a nursing home resident. They are touched often by staff members. They are turned over. Their legs are lifted so they can have their diaper changed. They are lifted under the armpits and placed into wheelchairs. They are pushed into position in bed. They are rolled over. Your touch is so different and so much better than what they are typically experiencing. Nothing can compare to a loving touch.
• Music – Its incredible how the aging mind stores its emotional responses to music. Play your mom’s favorite genre of music in the background as you visit. Observe how her demeanor changes.
• Food – Obviously, this one is dependent on whether your loved one has special dietary restrictions or considerations, but to the extent possible, bring in some great food for your loved one. The smells and tastes of old familiar favorites can rescue your loved one from the often bland and unappealing food of the nursing home. There’s a reason its called “comfort food” after all.
• Go Outside – If your resident can go outside safely and the weather is appropriate, take your loved one outside. Clean air and sunshine are always welcomed by nursing home residents.

#2: They stopped visiting or interacting with their loved one because their dementia made them feel like they weren’t really “them” anymore.

This is an often-heartbreaking reality of dementia. I see so many family members who stopped visiting months or even years before their parent’s death because their dementia has robbed them of their personality. The child understandably believes that the person they once loved is no longer “there” as evidenced by the fact that they don’t remember them or their former life together. It can be emotionally devastating. Nonetheless, we must remember that visitation in a nursing home isn’t about you! We get so tripped up on our own feelings that we often forget that loving an elderly parent in a nursing home is about providing the same love, security, peace, and comfort that they once provided for you when you couldn’t take care of yourself. Your parent did not leave you alone until you could talk. Your parent did not refuse to see you while you were in diapers. Your parent did not isolate you until you demonstrated that you knew who they were. Likewise, when you go to the nursing home to visit your mom or dad with significant dementia, be the thermostat instead of the thermometer. You don’t have to go into the nursing home hoping for certain conditions that will make it a “good visit” or a “bad visit”. It’s not about how Mom is “doing today”. If she remembers you, great. If she doesn’t, that makes no difference. You are there to be the thermostat. You are there to set the emotional temperature of that room. You are giving. You are putting your love and warmth and peace and compassion into your parent’s life without expecting anything in return.

#3: They limited their visitations because it was too “heartbreaking” for them when they should have been focused on providing love and comfort to their parent.

Like in the previous point, you are not doing these visitations for yourself. You are giving yourself and your love to your parent. Even if you are nothing more than a friendly familiar face to your mom or dad – that is more than they would have otherwise. I have never met a family that regretted visiting too much. Not one. I have met hundreds of clients over the years who wished they had visited more. If the room or situation is depressing – be the thermostat not the thermometer – bring joy and laughter to the room. Decorate the room with great photos of happy memories. Add some color. Add some music. Bring a dog by for the resident to play with. Lift up the resident!  That is your job!

#4: Feeling that their children would be too harmed by the sadness of the nursing home and the situation, they didn’t bring grandchildren to visit.

The most precious jewels you will ever have around your neck are the arms of your grandchildren. Our kids are busy. They have school and extracurricular activities. They have friends and social media. I get it. Let’s face it – they may not want to go to visit grandpa in the nursing home. I get that too. But I have seen many family members lament that they never brought their kids to see their parent in the nursing home. Again, I have no memory of a client regretting bringing their kids to see their grandparent in a nursing home. I am sure I sound like a broken record at this point but these visits are not for you (or your kids – although I guarantee they will benefit). Teaching your children to sacrifice a Saturday afternoon to go have lunch with a grandparent in a nursing home is a lesson that won’t be wasted. Few things light up a nursing home resident’s life like a grandchild coming to visit. The energy and vibrance of a young person in a nursing home seems to elevate the mood of more than just your parent, by the way. I have heard repeatedly from my clients that a grandchild visit lifts the spirits of several residents in the facility.

#5: They never said “I love you” before their loved one died.

This is simple and obvious, but for some reason even when visiting and advocating for an elderly resident in a nursing home, far too many people forget the “brevity of life” and believe there will always be another visit. The truth is, you should be telling everyone you love that you love them all the time, because regardless of age or health, tomorrow is not guaranteed. In the nursing home context, you should be on a heightened alert that time is precious. Never leave a visitation without saying you love them. Don’t worry if you think they didn’t understand it. It doesn’t matter if you think they don’t recognize you. It doesn’t matter if they don’t say it back. Just say it. Say it with your whole heart. Say it with your eyes. Say it with your touch. Say it with your words. Be love at every visit.

We all have our own imagination of what it’s like to lose a parent. What anyone who has actually lost a parent will tell you is that your imagination is wrong. The emotions and thoughts you have after losing a parent are almost never what you imagined them to be. Of all those clients who regretted not visiting or regretted what was left unsaid – they all found themselves surprised at how bothered they were by their regret. They were haunted by their missed opportunities. In my experience of interviewing hundreds of families from all different cultural backgrounds for over a quarter of a century, I can tell you this – those who loved well at the end never, ever regret it.

“Caregiving often calls us to lean into love we didn’t know possible.” – Tia Walker

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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.

Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.