The process of letting go of a loved one is excruciating and sad and impossible to estimate before you have done it. It’s also different every time. The level of care required for a dying person will differ based on each individuals needs. One thing is certain though – anyone in a caregiver role will need help. Lots of it. My personal experience was something of a rude awakening when it came to how hard it was to find people willing and able to help. The system of professionals I had mentally been counting on to offer relief required far more energy than I had anticipated at a time when I had little to spare.

I believe it would have been helpful to know more about each system, how it worked, and to have, perhaps, even made some plans before mom was sick to avoid all of the trial and error learning that took place at such an emotionally fraught time. When a person has only months to live, why waste that time with people who are uncaring, unskilled, or might, in some cases, make that person’s condition worse? The fact is that advocacy begins before paid caregivers ever enter your home … and someone needs to be prepared to do the research and follow up. This column is dedicated to some of the pitfalls of our current cultural expectations when it comes to hiring “experts” to care for the people we love in their final days. It will not deal with hospice, as that system demands its own column that will come at a later date.

One of the oddest interactions I remember having with a person while caring for my dying parents was with my mom’s mechanic. I had taken my car in to be serviced while a volunteer spent an hour reading to mom. I was blissed out to be in the sun with coffee like a regular person and was chatting up a storm when he looked deep into my face and said, “I take care of my aunt like you take care of your mom. I know how hard it is.” I was floored. No one knew how hard it was. No one we had met had ever done what we were doing.

“I visit her every week in the nursing home and, boy, I know it is rough,” he said. He meant well, but it was exasperating. Visiting a sick person is not the same as taking care of one. That said, the level of emotional turmoil experienced in simply visiting an ill relative can be so intense that the thought that it could possibly ever get any worse can be mind-boggling to some.

Images of patients at Last Station Nursing Home. Photo credit: Ulrich Joho. Used under Creative Commons license.

This is a major flaw in our overall system of end-of-life care. We do very little as a society to prepare people for the emotional aspects of loss and we do even less to prepare them for the practical aspects. Because of this, when the time comes the decisions they make are often uninformed ones, or are made in a moment of intense emotion. Either way, there is a reason lawyers tell you to be very specific in your written last wishes. They are counting on the fact that everyone you leave behind will be acting crazy. Nurses have told me, as well, that they expect family to be a little off-kilter. It’s one of the reasons it’s so hard to get a doctor or a nurse to listen when one is advocating for a patient. The professionals have already decided, before you even say a word, that in all likelihood you’re totally nuts.

Nursing homes are often the first point of interest for family with a dying loved one. Fear, sadness, insecurity, concern that they are not qualified to care for their loved one all play a part in the decision to place a person in a nursing home. Let me be clear …there are some great nursing homes and some people really do require round-the-clock care that can only be gotten in a medical facility. That said, those places cost huge money and are not what the average, middle-income or low-income patient will receive.

My grandmother lived her last days in a nursing home. She had a companion. People answered her calls immediately. She was able to leave the home twice a week with her daughter and participated in hundreds of available activities. She had friends there and liked her apartment well enough. She was happy by all accounts. My grandmother was blind and suffering from dementia. After grandpa died, there was no question that she couldn’t go home to live alone. After much struggle, she seemed to love her eventual home. That place – that beautiful place with art classes and dancing and comfortable chairs and nurses who came when called – cost the entire contents of her estate and then some.

My grandmother was well off and her final days in a care facility reflected that. When she got very sick, she was moved to a hospital, as the home was unable to care for her at that level. The hospital was like any hospital. Rough sheets, understaffed, busy nurses and a different doctor every day. For this level of nursing home care which eventually transitioned into standard hospital care anyway, my relatives spent $7,000 a month.

Most people do not have the kind of money set aside that my grandmother did. The level of care received in a nursing home does not, of course, correlate only with how expensive it is; but it is a fair measure of what the staff is likely to be paid, how attentive they are likely to be overall, what types of creature comforts will be available to your loved one, what sort of food they will eat, what activities will be available, what level of nursing care will be accessible, and generally what the overall experience may look like.

Recently, my grandfather on the other side of my family, which is predominantly working class and has no access to the type of care described above, was faced with the decision of putting my grandmother in a nursing facility when she broke her shoulder. He simply is not physically strong enough to care for her. He can’t get her out of bed to use the bathroom. At 86 years old, he is not equipped to be a caregiver. The hospital she was seen at assigned a physical therapy nurse to come twice a week. That was it. Whatever happens now is up to whatever amount of time and effort can be pieced together to help by their already overworked children and neighbors. This is a more common reality for average Americans when someone requires care.

The system in place is just not big enough, or wide-ranging enough, to truly provide the care people need. This leaves people with a couple of options. You can learn to do it yourself, as I did; you can hire in-home nursing support, if you can afford it; or you can put your loved one in any facility you can afford and hope that it’s good enough.

These choices will have a lot to do with where you live, how much money you have, how much time you are willing to commit to care giving, your physical ability to participate in care giving and a number of other factors, including how informed you are. This is where sharing can come in. Just the basic skill share, sharing of knowledge, reviewing of various options in a certain place can go a long way to improving a community’s access to good care.

It is vital to understand that all care quality is not the same. Just because your grandmother liked her nursing home or your aunt had a great home health aide does not mean that you will, too. Someone has to research and then someone else has to back it up. It takes a group of people sharing their efforts to bring up the quality of care available in any given place. Someone has to be the squeaky wheel when things go wrong. Most importantly, the time has come for some frank discussion about why we choose certain types of care for our loved ones, what was in which we are ignoring the truth of that experience and how, as a community, we can change that experience for everyone involved.

Images of patients at Last Station Nursing Home. Photo credit: Ulrich Joho. Used under Creative Commons license.

The big lie we all seem to be telling ourselves is that nursing homes are the only option. I propose that we need to look again at the first option. Learn to care for your loved one yourself. This is a sacrifice. It is hard and often unsupported. It often comes with a drop in income, less sleep, and emotional exhaustion. I will say, though, that there is something to be said for saying goodbye with the full knowledge that the person you loved and who loved you left this world in comfort, surrounded by the love and care they no doubt earned over a lifetime.

Recently, I attended my grandmother’s funeral at Arlington Cemetery in Virginia. The ceremony was full of ritual and closures. I had conversations with two family members who hadn’t spoken to me since my mother’s death. One aunt remains angry with me still. She and my mother were very close. She believes that I did a terrible thing when I brought my mother home to care for her, the way mom had cared for my dad. This aunt feels that a guarantee of good care – better than I could have given – was available to us in the form of a nursing home somewhere. She is entitled to her opinion.

Her opinion, however, left me with few options in terms of seeking help caring for my mom. When I asked her for help with mom's care, she said, “It was your choice to take care of her, now you have to live with it.” Then there was another aunt who told me, in no uncertain terms, that grief over illness and death were personal and I just couldn't expect people to get over their own feelings enough to come help. Nor was it acceptable for me to keep asking, despite the fact that the strain of caring for a heavy adult woman in various stages of paralysis and death was, frankly, too big a job for me all by myself. Even with my larger, stronger partner's help, we struggled to lift my mom, to bathe her, to sleep at night when she couldn't, and so many other things. We ended up hiring strangers, many of whom were under-qualified and expensive.

The decision to care for a loved one at home is a very personal one. I am not unbiased on this decision. I believe in it. The truth is, and any doctor will second this, people get better quality care from those who love them. No one will care for your loved one for $18 an hour on the night shift the way you will care for someone who raised you, cared about you, raised children with you … all out of love. That said, part of our cultural mishap in this arena is that we don’t really know what it takes to assist someone who's dying. We have to want to learn and then practically beg for the training. Because of this, our cultural discomfort with death as a whole often leads to people abandoning their loved ones to the care of “trained professionals” who are sometimes little more than under-paid adult babysitters with no particular training of their own.

While trying to hire additional in-home care giving help for my mother who was paralyzed and at what they call a level of Maximum Assist (she couldn’t bathe, feed, clothe herself, take medication, or use the bathroom without help) for nine months, I realized just how damaged our cultural system is. We went through 15 different caregivers before finally finding one who was competent. I don’t say that lightly, or to be rude. The simple fact is that many of the home caregivers we met with simply were not medically trained. They were used to turning on the television and sitting next to someone, occasionally getting them a glass of water or feeding them pills. Our circumstance was frightening and overwhelming to a number of people we interviewed. What frightened me was how many of them assured me that they did have the skills and training necessary to work with someone in my mother’s position.

First there was the one who couldn’t use a Hoyer lift and didn’t know what it was. A Hoyer lift is standard medical equipment for someone who can’t get in and out of bed on his or her own. So she was out. Then there was the one who didn’t understand how to change diapers. She couldn’t grasp the pull-tab concept. Then there was one who thought our trees were too scary at night (Seriously, I couldn’t make that up.) and the one who tipped mom out of her wheelchair. There was one who was too big herself to help move mom and, of course, there was the one who pushed her out of the Hoyer lift after claiming to know how to use it properly. The fall twisted mom’s leg, which developed a blood clot a week later, necessitating injections for the rest of her life. In addition to all this “help” we were receiving, my mother was seen by a variety of therapists who showed up, pronounced her hopeless, told me to do my best, and left. These were provided by the hospital.

Images of patients at Last Station Nursing Home. Photo credit: Ulrich Joho. Used under Creative Commons license.

Finally, several frustrating months in, we managed to find a very expensive massage therapist who came twice a week; hospice staff who could answer questions; a wonderful nurse who came by to check on mom even after she was declared too far gone to be his patient any more; Linda, a hospice bathing nurse who came twice a week to help; and an additional caregiver whose company charged us an arm and a leg plus mileage and paid her a measly $10 an hour. The one thing all of the people who finally worked out had in common was this: they cared. They saw that I cared. And, they were more helpful than they were required to be by their job because there was a struggling, caring family at home that they responded to. This is key.

The system is broken. You can not count on an under-paid staff member in a facility somewhere to care for anyone lovingly unless they see the same effort being put in by family and friends. We were lucky … my mother had money socked away for something like this. It’s gone. Every last penny. It takes an army to make someone comfortable in their last days. It takes coordination, care, cash, organization, and more than a little luck or divinity. My mother spent her last days eating lobster, watching movies she couldn’t understand, drinking champagne, and sleeping next to me. I don’t kid myself that she wasn’t miserable. She was. She couldn’t move. She couldn’t run her own house or sleep in her own bedroom upstairs or use the bathroom alone. She was stuck with needles and humiliated by hospital nurses who wouldn’t let us change her diapers during visits that lasted six hours or more. But, no matter what, she always had a clean house with her favorite smells, clean sheets, her favorite foods, someone to answer her calls within minutes not hours, massages, love, weekly manicures (which I am now an expert at), and someone by her side 24 hours a day. This is not the kind of care available in nursing homes.

That said, if your circumstances dictate that you must utilize a nursing home, it is very important to do your homework. First, ask around. Talk to the people who live in the facility. Talk to their families. Don’t rely on what people who work there will tell you … they have an interest in your decision that has nothing to do with your loved one. Make sure they are accredited and do a search to be sure that you know how many complaints have been filed against the facility. Check with the local medical board to make sure that everyone on staff is properly licensed. Visit your loved one daily, if possible, and keep a log of things that seem to be changing for the worse, then bring those items to the staff’s attention. Take note of how often a nurse stops by, of the bedside manner of the aides. Pay close attention to the night and weekend staff as there are usually fewer of them and they are often overworked. Take the time to make the staff aware of any special needs your loved one has and post them in a visible place. Most of all, make yourself known. Make it known that your person is loved and cared for. Those who witness your dedication will share that emotion.

The key to getting good care for your loved one from a stranger is giving it yourself first.

Darcy Totten


Darcy Totten