The question before us was “Are we caring with compassion or control?” I was sitting in a session at a recent geriatric conference in the north east. The speaker threw out this question…and I must admit, in all my years of being involved with, concerned about and responsible for providing care to someone “chronologically superior” (Yep, another new term since “old, aging, senior, and elderly” are the latest terms to become politically incorrect.) I had never thought of it in quite that way.
At times, I have been involved in the process of establishing or changing state regulations concerning long term care, particularly those with a dementia. I have participated in, created, and presented training for both family caregivers and those who work in long term care. Always, I have espoused the “person centered philosophy”. I have advocated for seeing beyond the disease or the infirmity to see the true person before us, needing our care. But this is a new wrinkle – a slightly nuanced way of looking at how we provide care.
Imagine the gentleman who has eaten a “sunny side up” egg each morning of his 82 years. He now finds himself residing in a long term care facility. And suddenly he can no longer have his eggs prepared as he prefers. It has something to do with health regulations about contracting food borne illness, and I get that – but still – imagine his chagrin that first morning in his new “home”. Or the lady who has had a “toddy” each evening before dinner since she was old enough to imbibe. But in her new home, that is not allowed. She can have iced tea, coffee, fruit juice, but no “toddy”.
The speaker pointed out we usually lead with safety. But must we? Or more importantly, should we? And then what about autonomy? Can we have both? Now most seniors (forgive me, but it’s shorter than the phrase “chronologically superior” and I am a lazy writer so I will use “senior” from here on out, but with the utmost respect.) will tell you adamantly, they do NOT want to give up their independence. But is that really what they mean? You see none of us are truly independent. We don’t cut our own lumber and then nail our house together. We don’t build our own car, nor drill for the oil we have someone else put in it for us. We don’t grow all our own food, we don’t weave the cloth and make our own clothes. What we have and what seniors want is really autonomy.
Autonomy is defined as the quality of being self -governing or self-directing. And that inherently means we have the right to make some bad decisions – stupid decisions- decisions that result is some sort of harm to ourselves. If we decide to eat nothing but donuts and cookies, we will end up with some results that may not be “good” for us. When my college-aged daughter chose NOT to put oil in her car, she soon experienced the ramifications of that choice – a dead car! But most of the time, we do make fairly considered decisions as we “self-direct”. They have ramifications but not so serious or final. I prefer bright colors, not beige and earth tones. I love my bright wall paper and colorful décor. I did my research and chose my quartz kitchen counter tops, over the ever popular granite. But when I put my house up for sale, this could impact how soon it will sell or regrettably, the price I receive. But right now it makes me happy!
As we age, unfortunately, there are some things that may impact or threaten our autonomy. It takes us longer to recover from illness or injury. We may experience some slowing down of our physical abilities – we may lose a bit of balance, or our joints creak and take longer to loosen up in the morning. And yes, sometimes it takes our brain – our internal computer- longer to boot up! And depending on our general health and our genetics, some of us may experience more illness or physical challenges than others. Some find themselves facing serious acute or chronic illness or conditions – such as arthritis, Parkinson’s disease, cancer or Alzheimer’s or a related dementia.
So how do we find the balance as we provide care for those who are experiencing challenges that impact where and how they continue to live? And if we must err on the side of safety, shouldn’t it be equally important to show them respect and maintain their dignity?
One of the things I have observed over the years is that those aging individuals -no matter their physical or even cognitive challenges -who have a reason to be , who continue to have a purpose, seem to do better, live longer, manage the challenges facing them a bit better. Researchers in happiness have discovered this as well. In the book, “100 Secrets to Happy Life” by author David Niven, he states that numerous scientific surveys indicated the number one factor in determining happiness was that a person’s life had purpose and meaning.
Yet, what meaning can we help our “seniors” find – particularly those who reside in long term care, when they are often relegated to simply sitting in a wheelchair being treated like children? How do we provide autonomy, purpose, meaning and dignity to those who are losing ability?
I have announced to my children that when I can no longer “wipe myself” when I go to the bathroom, that is when I want to be “taken out.” I say it with a wry sense of humor – but frankly, I mean it. I have watched my mother endure strangers doing such intimate care for her, and I have had to become used to doing such care for her over the past few years. In the beginning, it was embarrassing for both of us. Once, I even had to give her an enema, as the assisted living staff “didn’t do that”. But her doctor said she needed it, (Just so you know, they don’t do that in the ER either. We went there when my mother complained of severe abdominal pain. The ER physician literally said “She’s full of poop and needs an enema. But we don’t do that in the ER.”) So, what choice did I have? So, I did it. I gagged, but I did it. And now, stuff like that is no big deal. But occasionally when I am providing intimate “bathroom care” for my mother, she will say with exasperation “For heaven’s sake, I can’t believe this.” And I know she is disturbed that it has come to this. So, I always tell her I am sorry if this care is embarrassing for her. But that it’s ok. I love her and she needs my help so not to worry. I figure, if nothing else, an apology might make her feel better.
A few weeks ago, there was a disagreement with one of the nurses at the nursing home where my mother resides and one of the Certified Nursing Assistants. The C.N.A. had actually read the note I had placed on my mother’s wall. My mom isn’t at her best early in the morning. Her meds usually don’t kick in for a couple of hours after that 6:30 a.m. dose. She is often stiff, confused and obstinate at that time. It seems that most often, she does much better at 8:30 when her meds have taken effect and her private caregivers, who she knows and trusts, come to get her day started. This is written on a note on her wall. I have several notes on her wall. I learned early on that no one reads “the chart” carefully and with many staff changes, this was a way to relay information about my mother’s care and preferences. This particular nurse, who clearly had not read the note on the wall, was upset that the C.N.A, based on Mother’s reaction and resistance that morning, decided to let her sleep a bit longer. When I arrived later in the morning the nurse told me of the incident and said “I told him that she has Altheimer’s and she can’t decide when she gets up”.
I was able, with great restraint to keep from saying all that I really wanted to say. But my blood pressure surely was off the charts after hearing that stupid statement. Yes, I said stupid. Because it was stupid, and disrespectful and not at ALL part of the person centered care philosophy that has been allegedly taught to long term care staff for years. I wanted to say, “First of all, you are a medical professional. You have presumably had considerable education and training, thus you should KNOW HOW TO PRONOUNCE THE WORD! THERE IS NO “T” in Alzheimer’s.” But no, I didn’t say that. I also did NOT point out that even a person with Alzheimer’s can and should be allowed to make some decisions about their life and care! But I did point out the note on the wall (that had been there a good six months. Obviously, she pays attention to detail) and I did explain that my mother’s cognitive condition was still fairly good, even with her diagnosis and that yes, she most certainly could wait until her private caregivers arrive to get up and dressed. But once again, that issue of autonomy, dignity and choice was before me.
I certainly don’t have all the answers. It is not a simple issue. How far do we take this? Do we allow the individual who falls frequently, to simply get up at will and risk the consequences of bumps, bruises and broken bones? Our family has struggled with this as Mother has terrible balance caused by her Parkinson’s and has had several falls and broken bones. I was chastised by someone who works in food service about the “sunny side up” egg controversy. She assured me I would NOT want food borne illness to run rampant through the long term care facility. I know a nursing home administrator who has arranged a “physician’s order” for a cocktail for some of his residents. Not all, but for those for whom it would do no harm. And, of course, we can’t let the individual who can no longer safely drive, continue to get behind the wheel. I have seen families wait way too long to deal with this challenge – sometimes with tragic consequences. But is there a way we can have the conversation sooner rather than later and offer some alternatives that still allow some autonomy?
It’s certainly a vast and complicated question. I do not claim to have all the answers. It does pose a dilemma. If nothing else, I suppose. just bringing it up, may stir some conversation that could make a difference. I realize that some decisions about care, safety and control are easier than others. One expert I listened to recently, suggested that we ALL make a “when I can no longer drive” plan, just like we make any other retirement plans. That way, we have a say in the matter. And it helps our children or loved ones with viable options when that time may come. I also know that dementia, the losing of cognitive ability, complicates the issue greatly. But does common sense have something to offer? Can we, if nothing else, NOT paint everyone and every situation with a wide swath of “disability and indignity”?
Yesterday, someone from the activities department at the nursing home brought my mother a baby doll. She had heard Mother had Alzheimer’s and that Mother loved looking at the numerous photos placed around her room of her every young great-grandchildren. I know there are many women with Alzheimer’s who are comforted by having a baby doll. They have moved back in time, in their minds, to when they had been mothers (Ah, there is that purpose and meaning thing again), so they do find comfort in holding or tending to a baby doll. I have seen it be quite effective. But shouldn’t one do a bit of research? Maybe have a conversation with the person or observe her behavior before making such a gesture? Common sense tells me yes. That would be the respectful thing to do.
Apparently even my mother thinks so. She loves seeing those photos of her babies. And she loves holding them and interacting with them when they visit her. When presented with the baby doll yesterday. however, she articulately said “Get that thing out of here.” So there.