The Divine Spark In a Caregiver's Heart

 This is a blog post that I wrote some years ago but I think it still holds true. I thought of it because the birds are nesting outside my window. 

For the past couple of weeks, we haven't used our front door.  We enter and exit through the garage so we don't disturb the temporary home of a young family of purple finches nesting in our porch light. We don't turn on the light on either, because there's a Mama sitting on her eggs directly under the bulb.  As Jim jokes, we don't want boiled eggs or fried chicken!

These birds hold a powerful memory for me. They've nested before and I remember watching them intently in the days when Nicholas was struggling hard with illness and pain. At that time, they were my companions and my reminder that life pushes forward outside of my own four walls.  Here is what I wrote about my my solitude and my front door visitors in my book, The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving:

I remember reading a film review in the newspaper. I never actually saw the film and I cannot even recall its name. But the reviewer’s words are still with me today. The film was about a convent somewhere in Europe. A young nun complained about having to wash dishes and scrub pots. The Mother Superior chastised her, saying, “There is meaning in those dishes, in the act of scrubbing.” As the reviewer said, the film was a testament to the idea that the extraordinary exists within the ordinary; that the entire moral universe can be found in the mundane tasks of everyday life. This sense of wholeness and connectedness is what I found in my garden.

 Outside our front door in Ottawa, we had a black wrought-iron openwork light fixture. Each spring, a pair of tiny sparrow-like birds called purple finches came to nest in our lamp. The first year they came, all their bits of straw and string simply fell through the mesh onto the ground. Annoyed by the mess, we swept up and thought nothing more of it until one day, there on the ground lay two tiny, broken bright blue eggs. I wept a little, berating myself for not understanding their simple need to have a safe nest for their offspring.

The next year when we heard their distinctive chirps at the door, Jim cut some bits of cedar and created a floor on the base of the lamp. Nest building began in earnest, and soon there were four tiny eggs tucked up amongst downy roan feathers. That year, I watched as the mum kept her eggs warm and the father worried nearby. The eggs eventually hatched into a noisy quartet of open beaks and soon enough they were ready to fly. I sat an entire day, watching in suspenseful anticipation as every finch in the area arrived on our pine tree to begin “training” with the youngsters. By turns, each bird would fly to the top of the lamp, perch there for a second and fly off to the nearby branch. The young birds had a tricky rite of passage: they had to fly inside the lamp and exit through a narrow passage at the top of the ironwork. By dusk, all the birds had left the nest and we could finally turn on the light and resume our life without our temporary tenants.

These birds living in my midst, nurtured by us and by the rest of the flock, gave me a certain antidote against loneliness. I had genuine curiosity about the life in my garden and most certainly, felt “some minute, divine spark inside me.” By this time I had given up on any idea of justice or natural order in the world. Contained in my garden, I thought, there is transcendence; there is grace. I began to think that peeling potatoes, raking leaves and mixing cakes were all a sort of prayer. I began to understand that to be free, I had to have an antidote to despair.

          Theodore Zeldin writes about how some people have acquired immunity to loneliness in his book An Intimate History of Humanity.[i] In fact, one of his themes is actually called “Loneliness as an Obstacle to Freedom,” which of course speaks directly to me, given that I am discussing my family’s “Freedom to Be.” Being the mother of a child with multiple disabilities is, by definition, a very lonely life. Nicholas’ illness, mobility challenges and communication difficulties never made us top of the guest list at friends’ and neighbours’ homes. When his health deteriorated and pain became our constant enemy, we hardly ever spoke to anyone save health professionals. I had wonderful friends and an extraordinarily supportive family, but I found it impossible to share the gut-wrenching worry that seemed so exclusive to our little family. Zeldin talks about the fear of loneliness as being a great barrier to personal freedom. He observes that those who have overcome a fear of loneliness have done so through experiencing a solitary lifestyle, whether by choice or even by incarceration. But he also says, “The final form of immunisation has been achieved by thinking that the world is not just a vast, frightening wilderness, that some kind of order is discernible in it, and that the individual, however insignificant, contains echoes of that coherence. People who believe in some supernatural power have their loneliness mitigated by the sense that, despite all the misfortunes that overwhelm them, there is some minute divine spark inside them.”

---

[i] Theodore Zeldin, An Intimate History of Humanity (London: Vintage, 1998), p. 68.

When Mothers and Fathers No Longer Know Best - Guest Post

 It is always my pleasure to host Ottawa-based caregiver and writer Lise Cloutier-Steele here at the Caregivers' Living Room. Lise's voice is full of truth and compassion. Read on! 

Photo by Hoi An and Da Nang Photographer on Unsplash

The day my late father ended up in a hospital’s emergency department, never to return home again, we became a family in crisis. Both my parents could not get a grip on what was happening, nor did they understand the explanations provided by doctors about his condition. What became abundantly clear to me, however, was that I would have to take on the responsibility of managing whatever would come next.

Up until that fateful day in August 2006, my father had enjoyed relatively good health and an active lifestyle. He had gone to the hospital on his own, to report his dizzy spells, loss of balance, headaches and the infection in his right eye. My mother was so used to hearing him complain about these issues that she wasn’t overly concerned, and she even asked me if the doctors involved in his care were inventing problems where none existed!

Nine months later, my father was transferred from the hospital to a long-term care facility with the following confirmed diagnoses: orthostatic hypotension (a condition described as a sudden drop in blood pressure caused by dehydration, medication, or a nervous system dysfunction, and quite possibly the reason why he would sometimes drop to the floor when he got up from a sitting or lying position); dementia, loss of short-term memory, critical diabetic condition, depression, debilitating headaches and a damaged cornea. He was also fitted with a vascular catheter he would have to contend with until the end of his days, more than three years later.

The headaches and the damaged cornea were diagnosed as aftereffects of the herpes zoster virus, also known as shingles, from which he suffered greatly during the first few weeks of his admission to the hospital. Ask anyone who has ever experienced shingles, and they will describe how painful the symptoms can be. But facial shingles are the absolute worst, according to the specialists I consulted, and I found it so sad to watch my father suffer as greatly as he did from that condition.

Once admitted to a long-term care facility, it took months for my father to adjust to the realities of institutionalized care, and who could blame him? He was having crying fits during my daily visits with him, making it harder for me to leave without feeling guilty. Had there been another option for our family, he would not have ended up in care, but my mother had been diagnosed with Stage 4 cancer at the time, and I had my hands full sorting things out for her while overseeing my father’s care at his facility, and managing my own home and work life.

The origin of her cancer proved difficult to pinpoint, and following a couple of biopsy procedures, the interventional radiologist told me that he thought it might have been either the oesophagus or the stomach. Whatever the origin of her cancer, or its cause, there was little hope for recovery.

The signs were there

Perhaps I should have paid closer attention to what my aging parents were doing to manage their health. On the other hand, they were usually not particularly receptive to any suggestions I made that involved the slightest disruption to their daily routine.

The decline of my father’s cognitive abilities was obvious, and my mother became an expert at covering up for the strange behaviours I observed. He would be out for hours on his walks because he couldn’t find his way back home, leaving him feeling distressed after his outings. Use of the television remote became such an issue that my parents bought a new television thinking theirs was faulty. When finding a channel on the new television proved to be as difficult, they blamed the salesperson from the furniture store for selling them a defective unit.

Even my mother’s battle with cancer might have been easier to bear had she reported her back pain when it started. For years, she sat against a heating pad for pain relief, and she never reported the problem at her annual appointments with her family physician. Why she didn’t, remains a mystery.

My mother started taking Lipitor when she reached her mid-70s. It was prescribed after blood work revealed that her cholesterol level was slightly elevated. She claimed that her doctor had not explained how she could manage her condition by changing some of her eating habits. I found that hard to believe. It’s more likely that she didn’t understand enough about healthy nutrition to consider any of the doctor’s advice. As an example, when I suggested removing the skin off chicken before cooking it, my mom said she couldn’t throw away the best part! I think Lipitor gave her a false sense of security. The drug was taking care of her condition, therefore, no need to make any changes to her food prep and diet.

My father was diabetic. Yet, he continued to eat cream-filled and sugar cookies every day for his afternoon and evening snacks. It’s not like he didn’t have other options because I baked an ample supply of heart-smart treats for him every week. My mother never liked desserts or cookies, so the healthier alternatives were for his enjoyment alone.

I’d also purchased several cookbooks of quick and easy recipes for people living with diabetes and conditions of elevated cholesterol. When I asked my mom if she had tried any new recipes, she would say that she couldn’t with my father around. She claimed that if he talked to her while she was cooking, she’d forget an ingredient, and the result would be disastrous. To further support her reasoning for not trying anything new, she’d tell me that when I got to her age, I would see how easy it is to forget things.

How I hated it when my mother said things like that to me. I never had a good comeback, and it also made me wonder if I would become as reluctant to change my ways as I got older. Of course, I took a completely different approach to healthy nutrition decades ago, and luckily for my husband and me, the benefits have been numerous. Given this, I suppose I’m just like my mother, because now that I’m set in my ways about eating healthily, I know I might be as reluctant as she was to make changes.

Outsmarting my parents

It was a real challenge trying to get my parents to change their habits before they both became seriously ill. I couldn’t understand why they wouldn’t consider alternatives to help them live longer, but there was one time when I managed the impossible.

One day, when I asked my father about a new drug he was taking, he explained that Atacand had been prescribed to help him stay calm, and relieve him from stress affecting his blood pressure. My mom volunteered that she didn’t know why he was given that drug since she was the one with all the stress! She added that because my father was on this drug, their medical insurance cost them a lot more to visit with my brother in Florida.

That set off an alarm bell for me, and later that day, I did a bit of research on the adverse effects of Atacand. Some studies showed that it could lead to heart rate and rhythm disorders, respiratory complications, vertigo, gastrointestinal disorders as well as clotting and other problems.

I explained this to my parents, and the cheaper travel insurance rate was reinstated once my father stopped taking the drug, and a less risky alternative was prescribed. My mother actually came up with a few good suggestions to help him remain calm, and eventually his blood pressure regulated itself.

There are many serious health conditions for which prescribed drugs can be helpful, and in some cases, life-saving. Nevertheless, when seniors are prescribed medications with serious side effects and risks, tests should be administered to justify the need, and patients should be monitored closely for any potential reactions. And, if tests show that a condition is no longer of concern, shouldn’t they be weaned off the drug instead of being left on it indefinitely?

Getting involved

Years ago, I talked to Lisa Van Bussel, a geriatric psychiatrist based in London, Ontario, to ask if she had any advice on how baby boomers could help their aging parents make better decisions about their drugs.

Dr. Van Bussel said that ‘when children of older adults have questions and concerns about their parents’ prescriptions, over-the-counter and herbal drug use, they should consider going with them to their next doctor’s appointment, or consult a pharmacist where their drugs are dispensed. Your parents may not feel comfortable asking why medications are stopped, started or used. These health care professionals can answer questions about common side effects, drug interactions, and how medications are metabolized.’ Dr. Van Bussel also stressed that senior patients should not stop or switch prescribed medications without consulting their doctor.

That sounded like a great plan to me. I doubted that my parents would be willing to have me accompany them to their medical appointments, but much to my surprise, they were grateful for my involvement. That responsibility soon became another regular task for me, one that I regretted not having undertaken sooner.

Planning ahead

If there is one important thing I learned from caregiving for my late parents, it was the need to plan ahead for the future. We all need a plan, supplementary health insurance, as well as savings to make sure that we get the best possible care in our old age.

Elders facing a health crisis generally don’t want to become a burden to anyone in their family. Most want to live independently for as long as they can. But, in order for that to happen, provisions have to be made.

Wills and Power of Attorney documents for personal health and financial care plans don’t have to be complicated; you just need to have such documents in order before something happens.

Cherishing the memories

Role reversal between children and their older parents has its challenges, but it can also lead to good times and fond memories. I enjoyed outings with my mother when she was able throughout the year before her passing. I also enjoyed painting landscapes with my father at his care facility, bringing in hot meals for him and his best friend, and going out for coffee and shopping every Saturday morning.

Every time I helped him get in the passenger seat of my five-year-old car, he would tell me how he liked my ‘new’ car, and once we got going, he would tell me how well it handled the road. At one point, I stopped correcting him about my used car, the same one he had been driven in the week before, and agreed with him about how new it was and how smooth the drive.

When it became clear that my father needed better care than his long-term care facility could provide, I made inquiries about a move to another home, and a social worker became involved as part of the process.

I was not allowed to be present for her interview with him, and of course, I was anxious to hear from her afterwards. My father had never been the type of parent who would openly praise his children, and because he suffered from dementia, who knew what he might say during an important interview?

The social worker called me shortly after her meeting with him to say they had enjoyed a wonderful chat. She told me that when she asked him which facility he would like to move to, he told her he would go wherever his daughter decided he needed to go. Then she said that his comment was very complimentary to me as it showed how completely safe he felt regarding any decision I made on his behalf.

The social worker’s call on that day made me feel especially proud. It also confirmed, at least in my mind, that I had done the best job I could by my parents, and these days, I have the good memories to prove it.

Both my mother and father passed away in a palliative care centre where their end-of-life needs were met with the utmost of compassion and professionalism. Their memory continues to be a blessing.

Lise Cloutier-Steele is an Ottawa writer and the author of the 2025 Edition of There’s No Place Like Home: A guide to help caregivers manage the long-term care experience, available from www.ottawacaregiver.com.

This article appeared originally HERE. 

Webinar: Join Us to Learn a Life-Changing Approach to Wellbeing

 

There is so much talk about self-care in the online caregiving discourse that it's just plain exhausting. What we need is a simple and realistic way to think about how to meet our own physical and emotional needs while we give care to another. I found a great one and it's called The F-Words in Childhood Disability (but it's not just for children with disabilities, I've used it for myself and it truly changed my life). 

I'm excited to tell you about an upcoming F-Words webinar! Dr. Peter Rosenbaum will join me in conversation about how this approach came to be and how it has helped tens of thousands of families around the world. The webinar is on January 15 at noon EST and you can register for the link HERE. 

I first learned about the F-Words when I heard about this article that my friends Dr. Peter Rosenbaum and Dr. Jan Willem Gorter wrote for a medical journal. The F-Words are: FUNCTION, FAMILY, FITNESS, FUN, FRIENDS AND FUTURE. The F-words build upon the World Health Organization's (WHO's) International Classification of Functioning, Disability and Health (ICF) framework. The ICF framework shows how body structure and function, activity, participation and environmental factors and personal factors are interrelated and equally influence our health and functioning. 

These domains are key ingredients for the health of any child growing up with a disability but I began to think about how we could use this framework for everyone in the family, especially the caregiver! 

Here is the simple F-Words template. You can download and fill it in using images or words (images are helpful is the person you care for has cognitive or visual challenges). Everyone in the family can fill in a personal template and then share the results to see who can help whom reach their goals: 

Think about your own personal goals in each of the F-Word domains. Given the givens, what can you realistically hope for in your own Function, Family, Fitness, Fun, Friends and Future? What are activities or goals that you could add into these domains? Use this template to think about balance in your caregiving life and share it with your loved one, your extended family, friends and even the medical professionals who support you. 

Ask yourself how your family members' F-Word goals mesh with your own. Can you negotiate or use these goals to help create a schedule of activities that reflect your best effort at balance? 

For more information on the F-Words, check out the range of free tools and resources on the CanChild website HERE. And join us for the webinar if you can to learn more about how the F-Words changes caregivers' lives (including my own) for the better! 

A Caregiver's Twelve Days of Christmas

 My words to the carol "The Twelve Days of Christmas" are fun, but they reveal a truth about caregiving, too. We all begin with a task or two. "Oh, it's not much", we think. "That's no trouble at all." And it isn't. But then two tasks becomes four and four becomes eight, and so on. Soon, we discover that we are very, very tired. But nevertheless, we persevere. So here's to all of you in celebration of the loving care you provide every day of the year.

On the First Day of Christmas on my list of things to do: I cooked dinner for my fa-mi-ly.

On the Second Day of Christmas on my list of things to do: I shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Third Day of Christmas on my list of things to do: I called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Fourth Day of Christmas on my list of things to do, I picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Fifth Day of Christmas on my list of things to do, we went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Sixth Day of Christmas on my list of things to do, I did six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Seventh Day of Christmas on my list of things to do, I bought seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Eighth Day of Christmas on my list of things to do, I disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Ninth Day of Christmas on my list of things to do, I ordered the meds, disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Tenth Day of Christmas on my list of things to do, I calmed jangled nerves, ordered the meds, disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Eleventh Day of Christmas on my list of things to do, I wrapped all the presents, calmed jangled nerves, ordered the meds, disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Twelfth Day of Christmas, I poured myself a drink, calmed jangled nerves, ordered the meds, disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

HAPPY HOLIDAYS, EVERYONE!

From me and my family to you and all of your loved ones, I wish you a very Merry Christmas and Happy Hanukkah this holiday season. May 2026 be a good year for all of us! xox

Happy Birthday to my Mum in heaven (December 24) and Merry Christmas too! 

A Concept for Giving Back to Caregivers

 

A Concept for Giving Back to Caregivers

There have been times around the holiday season of giving when I have thought, “I give to others every day.  Will anyone give to me?  If they do, what do I need or want?”  I wasn’t thinking of a sweater or a new pair or socks – I was thinking of care.  I was daydreaming about someone caring for me, the caregiver. 

Eva Feder Kittay is a philosopher and mother of an adult daughter, Sesha, who has severe cognitive disabilities.  Eva also cared for her ailing and elderly mother until last year. 

Eva coined the word doulia to describe a new paradigm for reciprocity for caregivers in the community. She describes doulia as an ethical principle that recognizes giving care as an important contribution to the overall good of society. “We can ask whether parents or kin who assume the role of caregiver should have claims on the larger society to support them in their efforts to provide care. If, for all the effort and care in raising a child with disabilities into adulthood, there is no payback (conventionally understood) to the society at large, can we still insist that there be a state interest in helping families with the additional burdens of caring for a developmentally disabled child? Is there a state interest in assuring families that their vulnerable child will be well cared for when the family is no longer able or willing to do so?”[i] Kittay answers her own question with a resounding yes and that response is rooted firmly in her own mothering experience. She describes a concept of interdependency or “nested dependencies” that recognizes the inevitability of dependency as a fact of being human. It is via the idea of doulia that reciprocity can be realized through policy because the driving force is an equality that “our full functioning presumes our need for and ability to participate in relationships of dependency without sacrificing the needs of dependents or dependency workers.”[ii]

Here Kittay is advocating an ethical framework and moral obligation for society to look after caregivers so that caregivers can carry out that care without sacrificing their own wellbeing. She is talking about ‘payback’ for the caregiver. 

We know doulia as friends and family members who help a new mother by watching the older children and performing household chores so that the mother can give total care to her newborn. Implicit in this natural family tradition is the understanding that the mother is “owed” care because she is giving care to a much loved, highly vulnerable newborn. Her first priority is to give the best care possible to her beloved charge.

Over the past few years, I have been thinking about how to ignite a wholesale shift in thinking about care across society.  Kittay’s ideas about doulia and inevitable, nested dependencies provide a great jumping off point for a new conception of care for the caregiver. 

But where do these ideas lead, practically speaking?  Well, I believe that employers should have a two-pronged corporate social responsibility program – family care and community care.  Assuming that some employees have caregiving responsibilities that are sometimes onerous, causing them to claim sick days or leave to look after a critically ill spouse, elderly parent or child with a disability, the company could and should support its own.  The second prong of the corporate social responsibility strategy would be a focus on the needs of the greater community.  Another idea would be to have local volunteer bureaus match families with volunteers.  My local volunteer bureau matches only willing helpers with agencies, never with needy private citizens. 

Kittay is right.  We don’t blink an eye when people rush to help with household chores of the new mother.  We instinctively know that she needs to have her full attention on caregiving and the duty of others is support that role.  So why are older caregivers any different?  They aren’t.  And if long-term caregivers don’t receive long-term support, they and their charges will suffer.  Doulia is a concept worth thinking about and acting upon this giving season and all year round.

---

[i] Eva Feder Kittay, “When Caring Is Just and Justice Is Caring: Justice and Mental Retardation,” Public Culture, 13.3 (2001): 565.

[ii] Kittay, Love’s Labor, p. 132.

What Every Caregiver Should Know About Clinical Trials for Alzheimer's and Parkinson's

What Every Caregiver Should Know About Clinical Trials for Alzheimer’s and Parkinson’s 

Many regular visitors here in the Caregivers' Living Room will know that I am a passionate supporter of health research, both as a participant and as an engaged caregiver on research teams. I am delighted to host this guest post by Anthony Ciabarra, MD, PhD, a distinguished neurologist and researcher (see his bio below). Here Dr. Ciabarra unpacks all the benefits of participating in Alzheimer's or Parkinson's clinical trials (but the benefits are the same no matter your diagnosis or disease group). - Donna

                                              Photo by CDC on Unsplash

When it comes to Alzheimer's clinical trials, many caregivers feel overwhelmed, unsure, or simply unaware of what’s involved. But for families navigating the realities of Alzheimer’s or Parkinson’s, understanding these trials can be life-changing. They represent more than just research—they offer hope, access to cutting-edge treatments, and a chance to make a difference. 

Let’s break it all down. 

Understanding What Clinical Trials Mean 

Clinical trials are research studies involving people. They’re how new drugs and therapies are tested for safety and effectiveness before becoming public. For neurological diseases like Alzheimer’s and Parkinson’s, this is a critical step in advancing treatment. 

There are four phases in clinical trials. Each phase digs deeper, starting with small groups of participants and scaling up only if the treatment shows promise. By the time a drug reaches the final phase, it’s undergone years of testing. 

Many trials focus on slowing cognitive decline or reducing symptoms like memory loss, confusion, or tremors. Others test preventive strategies for those at high risk. 

Alzheimer's clinical trials are reviewed carefully by independent committees and regulatory bodies. This ensures both patient safety and scientific integrity. 

Why Caregivers Should Pay Attention 

My aunt Carla was diagnosed with early-onset Alzheimer’s at 58. She was sharp, witty, and the kind of person who’d solve a crossword in pen. Watching her slip into forgetfulness was gut-wrenching. We tried medications, therapy, even diet changes—but nothing halted the decline. Then we heard about a local trial testing a new protein-blocking drug. It wasn’t a cure, but it slowed her progression just enough to give us more time. She even remembered my daughter’s birthday that year. 

As a caregiver, participating in a study gave us purpose and support. It introduced us to doctors who listened, and fellow families facing the same rollercoaster. More than anything, it made Carla feel like she was contributing—like she mattered. 

Who Qualifies for These Trials? 

Not everyone can sign up. Each study has inclusion and exclusion criteria. This could be based on age, disease stage, genetics, or past medical history. For example, some trials accept patients only with mild cognitive impairment, while others seek those with moderate symptoms. Others look for people carrying specific biomarkers or genetic traits. 

A medical screening is always part of the process. It ensures that participants won’t be harmed and that the data collected is scientifically valid. 

The Hidden Benefits of Participating 

One major advantage of joining a trial is early access to treatments not yet on the market. Some participants get therapies that won’t be publicly available for years. 

Even in placebo-controlled studies, all patients receive excellent care and close monitoring. Regular check-ins, lab work, and cognitive testing become part of the routine. This level of attention can help catch other health issues early. It also gives families a clear picture of disease progression and response to treatment. 

Addressing the Fear Factor 

Many caregivers worry about risks. What if the treatment makes things worse? What if it doesn’t work at all? 

These concerns are valid. But every clinical trial is designed with safety as a top priority. Before any patient joins, researchers explain potential side effects, risks, and expectations. 

Participation is always voluntary, and patients can withdraw at any time—no questions asked. 

In Carla’s case, the trial nurse sat with us for two hours, going over everything. We didn’t feel pressured. We felt informed. That made all the difference. 

Alzheimer’s vs. Parkinson’s: Trial Differences 

While Alzheimer’s trials often focus on memory, thinking, and beta-amyloid buildup, Parkinson’s trials may zero in on motor function, tremors, or dopamine levels. Both diseases involve neurodegeneration but affect different systems and symptoms. Some research overlaps, especially in cases of mixed dementia or late-stage progression. 

There are also trials exploring how inflammation, sleep, or gut health impact both conditions. Being aware of these nuances helps caregivers advocate better and ask smarter questions when researching options. 

How to Find the Right Trial 

Start by asking your neurologist or primary care physician. They often know about local or national studies and can provide referrals. You can also search online databases like ClinicalTrials.gov (USA only). Filter by location, disease stage, or treatment type. 

Another great resource is local hospitals affiliated with research universities. They typically have dedicated departments for neurodegenerative diseases. 

Before enrolling, make sure to ask: 

● Is travel required? 

● Will there be out-of-pocket costs? 

● What happens after the study ends? 

Stories That Inspire 

Maya, a 62-year-old retired teacher from Houston, joined a Parkinson’s trial involving deep brain stimulation. She was skeptical at first, but three months in, she was writing on a chalkboard again. 

James, a caregiver in Chicago, enrolled his father in a nutritional therapy trial for Alzheimer’s. Though results were modest, the structured routine gave his dad stability and peace. 

These aren’t miracle cures. But they are reminders that progress is possible—and often, participation itself becomes empowering. 

Key Takeaways for Caregivers 

If your loved one has Alzheimer’s or Parkinson’s, clinical trials can be a real opportunity. They offer access to new science, expert care, and a sense of purpose. 

While there are risks, they’re well-managed and clearly communicated. Do your homework. Talk with doctors. Read the fine print. And most importantly—trust your gut. 

For some families, these trials become a turning point. Not because they reverse time, but because they give it more meaning.

 

Anthony Ciabarra, M.D., Ph.D. has been practicing neurology and supervising neurology clinical trails in Fullerton for over 20 years. As a graduate of Yale University School of Medicine, he participated in the Medical Scientist Training Program receiving an M.D. degree and a Ph.D. degree in the Department of Pharmacology. Dr. Ciabarra has participated in the development of a number of breakthrough treatments including new treatments for Alzheimer's disease, Parkinson's disease, migraine headache, and other neurological conditions.

The AARP Caregiver Answer Book: My New BFF

 There are few books on the market as practical and helpful as The AARP Caregiver Answer Book by Drs. Barry Jacobs and Julie Mayer. Barry and Julia are husband and wife and they are psychologists who have their own deep personal history of family caregiving. 

Look Inside:

The book is structured using questions that caregivers typically ask, together with answers in the form of narrative experiences that resonated strongly with me. Questions are organised into chapter themes such as Caring for a Parent, Caring for a Spouse, Communicating with Dignity, Day-to-Day Caregiving at Home and Caregiving in a Facility or From a Distance, just to name a few. The authors never skirt around the real suffering that many caregivers endure. But they are realistic about the rewards, too. And they generously share their own hard-earned wisdom: 
"We reflected on the multitude of experiences we'd had and how they had changed us. And they had changed us in ways that weren't all obvious initially. We also felt exhausted. And we felt confident in ways that we hadn't before." 

The authentic compassion of the authors shines through  in deeply comforting phrases such as, "We are all human, and we've done our best given our circumstances." I found the hundreds of caregiving situations that are introduced in the form of questions to be realistic and often very painful. But Drs. Jacobs and Mayer answer with a deep understanding of the complex drama that plays out in caregiving families, often when the very life of a loved one is hanging in the balance. 

"Most caregivers say they think they will look back on it as difficult but worthwhile. Ultimately that does tend to be true. You don't come away from caregiving unscathed, but you almost always come away with more meaning in your life and a sense that you did a good thing or at least the right thing."

This is a wonderful book that I highly recommend to anyone in a caring role. 

To hear more from Dr. Barry Jacobs, listen to my Caregiving Essentials conversation with him about sibling conflict here. Or, listen to Stephanie Muskat's Caregiver's Compass conversation with Barry and Julia here.

And finally, I'm grateful to Feedspot for highlighting The Caregivers' Living Room in their Top 60 Canadian Home Care Blogs!