By Tricia Matthews
“When I get sick, I want you to bring me here.” My mom told me this when we were driving home, after a long, full day at the Small Animal Veterinarian Hospital in Gainesville, Florida. We had travelled there for a consult for my rescue dog, who was experiencing some chronic diarrhea. Our local veterinarian had done everything he could do to address it, but the condition continued, unabated. My mother accompanied me on the drive there, as well as the five-hour appointment. During our time there, we saw a veterinarian, a veterinarian specialist, and a veterinarian student. Multiple tests were done. We received many of those results that same day and were therefore able to agree upon a tentative treatment plan. Although my mom and I were tired, we both found the travel and consult was extremely worthwhile. Although my mom might have said it partially in jest, I understood what she meant.
A team of healthcare providers worked holistically to troubleshoot the problem. In short, our dog got individualized care. They did not brush off our concerns as simply “par for the course in a rescue dog” but worked to identify the cause of our dog’s chronic problem. They took some time to gather basic objective details: from us, as the caregivers; from diagnostic tests; and from a clinical examination/observation of our dog. Even with all that going on, they still took time to make our dog less anxious and more comfortable in this alien environment.
I wish I could have actually brought my mom to some place that would have given her all that when she later got sick, but it currently does not exist. In this short article, I want to share some of the things we learned the hard way as we navigated how best to take care of our mom as she suffered from dementia. Along the way, we met some incredibly caring and competent health care providers, but we also encountered many problems. In the end, this field of health care could really take a fresh look at the way we treat dementia patients – from treatment in the home, to memory care centers, to doctor’s appointments, to ER visits, and hospital stays.
What We Bring to the Table.
Before my mom got dementia, I did not critically analyze some of my beliefs about dementia. For instance, I had somehow come to mistakenly believe that symptoms of dementia, or Alzheimer’s Disease in particular, are fairly uniform among those suffering from it. In fact, one size does not fit all. While there are some commonalities from one patient to the next, there are marked differences between them as well. Some patients, even in advanced stages of the disease, still recognize their loved ones as loved ones. They might not remember their names or the exact role they have (e.g., daughter, sister, cousin, etc.), but they still recognize the person as someone who loves them. Meanwhile, other patients do not recognize any loved ones. Some patients retain their same temperament throughout while others undergo radical changes in their temperament. Some patients develop a fear or aversion to water in the shower, while others have no problem with this. These are just a few examples of significant differences.
Despite these differences, the health care system treats all patients struggling with dementia in exactly the same way. This is true even of health aides and nurses who work exclusively in the area of memory care. In short, we do not treat people suffering from dementia as individual beings, who are each on their own individual journey struggling with the disease. Instead, we treat each one as if they had the same face of the illness, as if all the facets of their identity had been reduced to just one thing, dementia. Accordingly, not only does this disease gradually work to erase their individual identities, our own healthcare system unwittingly facilitates that process.
Each one of us likely brings one or more unconscious beliefs or biases to the table when interacting with someone who has dementia. Taking a moment to examine what those might be could radically improve our interactions with those struggling with the disease – whether those interactions are with loved ones or whether those interactions are with patients needing medical assistance or assistance with daily life skills.
Are We Treating the Patient or Managing the Symptom?
If your father, who could not speak clearly since having had a heart attack six months earlier, suddenly experienced a drastic change in behavior, most doctors would not just think: “Well, that’s probably his heart acting up. Let’s just give him some medicine to quiet him down.” However, that protocol happens repeatedly to patients with dementia. Once a patient has the label of “Alzheimer’s” or “dementia,” it is as though the health care system thinks that patient cannot experience any other illnesses, infections, or conditions. Unfortunately, that is not the case.
All too often, a dementia patient can be suffering from a painful urinary tract infection, but she never says she is in pain, she does not cry out or grimace when she urinates, and she does not nod her head in acknowledgement when asked about it. What she does do is behave differently than normal. Perhaps she suddenly starts falling. She might start screaming in the middle of the hallway when she has never done that before. She might be extremely agitated or stay up all night. She might simply seem even more confused than typical for her. But because she does not present with the precise symptoms typically associated with a urinary tract infection, she may never get a urine test. She may never get diagnosed with it and then treated.
It could just as easily be a raging toothache, an ear infection, a painful bout of constipation, or pain from a fall. Doctors, nurses, health aides, spouses, daughters, and sons all miss it because we are looking for what we are used to seeing in the regular population. Instead, we automatically assume the dementia has gotten worse and reach for medication to make them stop whatever new and unusual behavior has emerged.
Why do we expect a person suffering from dementia to be able to communicate with us, as if they had no dementia? What if we took some inspiration from pediatricians, treating very young patients? Thinking back to what my mom said, what if we took some inspiration from veterinarians, whose patients cannot say what ails them and whose patients cannot answer questions about their symptoms? Instead, veterinarians rely on the companion animal owner or caregiver telling them about changes in the animal’s behavior (e.g., eating, drinking, sleeping, elimination, energy, affect, etc.). They also use some basic, diagnostic tests to try to determine the cause of the abnormal change in behavior.
Critics would point out the enormous cost of ordering a bevy of tests when there are no objective symptoms to justify the necessity of such tests. I would argue that the objective symptoms are there (e.g., an unusual change in behavior); it is just a different set of objective symptoms than we use for the population at large. And, yes, it would require more urine tests and more blood tests but the medications used to control behavior or sedate patients are not without their own costs.
If, after the tests are done, no other possible cause could be at issue, then at least, we will be treating the person for what most likely ails her, instead of just assuming that the only thing that ails her is dementia.
We Need to be Present. We Need to be Present.
I wrote it twice for a reason.
To make the most out of the time with our mom, who was suffering from dementia, I had to force myself to stay in the present when I was with her.
And, here is where the mindfulness movement saucily shook its tail feathers in my face. I found it exceedingly difficult. I was often not successful. But when I was, I shared some beautiful moments with her – gems of moments, in fact. Here is the thing: When I was mired in the past, I was filled with sorrow because I was constantly comparing how my mom used to be to how she was today. When I was focused on the future, I was filled with anxiety and grief, thinking of how her health would gradually worsen and what lay ahead. Similarly, when I focused on my work responsibilities and looming deadlines, I became anxious. But when I was in the present, I could enjoy spending time with my mom right then, right there. I was more light-hearted. She felt that. Consequently, she felt more light-hearted. We often danced and laughed. It felt good. No, it felt great.
When it came time to make the difficult decision to move our mom to a memory care center, “being present” took on an additional meaning. I learned you have to be present and involved with whoever is helping take care of your loved one with dementia. Memory care centers and assisted living facilities promise much, but in the end, they are businesses. To ensure they deliver on those promises, you need to visit often, ask questions, and be observant. The better public elementary schools are often those where many parents volunteer and invest time and money to make the school a better place. Likewise, the better assisted living facilities are those where family members and others visit and invest time and resources. There are many incredibly gifted and caring health aides, but those aides often work long hours and do not get great pay for the important work they do. In visiting, we could get water for my mom, grab her a blanket, change her blouse, or just be there with her. I got to know some of the aides. They might ask me a question about my mom simply because I was there. Your frequent and observant presence will enrich the life of your loved one as they acclimate to their new home, help those overworked health aides, and help keep everyone accountable.
What You Do Matters.
Even though you cannot cure them of their illness, what you do matters. What you give them to eat and drink matters. I saw our mom’s cognition improve, even if only temporarily, when she ate a nutritious stew as opposed to a hamburger and fries. It matters.
How you address them matters. As our mom started getting sicker, some people acted like she was not even there. They would say things in front of her, as if she were not even conscious or aware of what they were saying or doing. At times, my mom may not have understood the language they were using, but she ALWAYS understood the emotion. Let me give just one small example.
At the hospital or the ER, some of the doctors and nurses would not even address my mom or look directly at her eyes. Maybe they were uncomfortable, not sure what she would say or do. Maybe they were at a loss as to how to verbally communicate with her. Maybe they simply thought that investing time and resources to treat someone with dementia was not a good use of their time. I do not know. All I know is that they acted like no one was there, that her body was simply a shell. In contrast, other doctors and nurses would look directly at my mom, greet her, and smile. My mom would often light up, like a flower directing itself towards the sun. Perhaps she did not know what they were saying or why she was there, but she still felt warmth when it was directed toward her. She recognized a smile directed at her. She responded warmly to that with a smile of her own. Even if she had not smiled back, what would it hurt to do that simple acknowledgement, that simple human gesture. It required no expensive equipment and took only seconds, but it mattered.
Regrettably, we currently have no cure for dementia or Alzheimer’s Disease. However, that fact should not stop us from taking steps to improve the way our health care system treats those struggling from this devastating illness. While we await for those much-hoped-for scientific advancements, perhaps the single biggest way to improve health care would be to invest in some training specific to this area for our health care workers (e.g., physicians, nurses, health care aides, etc.).
If you or someone you know is experiencing signs of dementia, call our office or access our Resource Manual for guidance along the way. You can also read our latest blog post Reasons for and Risks of Dementia Diagnosis Delay to know what obstacles may arise when seeking a diagnosis. You are never alone!