The first session at the Aging in America conference that I attended last week was titled, “Is family caregiving the next public health crisis?”
I’m sure all of you can guess what the answer was: a resounding yes.
After attending this year’s conference in Chicago, I came away with two major impressions: there are many aging and caregiving battles ahead of us, but we also have an army of smart, determined, and compassionate advocates who are dedicating their lives to the cause.
It was empowering to witness family caregivers being recognized, supported, and championed, instead of being marginalized, trivialized, and ignored. It was inspiring to meet so many professionals who are working tirelessly to address the concerns of caregivers. I presented my Respite Care Share concept as part of the poster sessions.
Progress is being made, but there are still many issues left to address. The recurring topics I heard addressed throughout the conference:
- Managing the financial toll of caregiving
- Ensuring family caregivers are recognized by the medical community as essential members of their loved one’s care plan
- Making sure family has adequate support system
There are no easy answers on the financial front, with America’s health care legislation a political football that has been punted for the time being. There are various bills tackling the cost of caregiving that have been introduced in Congress, but it’s at the state and county levels where the most innovative programs are being launched. Family caregivers should contact their local aging agencies to see what aid and other resources are available. I talked to several people who work for community health agencies that stressed how in some cases, aid is available, but people are unaware that such programs exist.
The CARE Act, which has been passed in dozens of states, requires hospitals to record the name of the designated family caregiver on medical records, inform that person when a patient is discharged, and provide training to the family caregiver for medical tasks that will need to be performed at home upon patient discharge.
Support for caregivers in all forms was discussed extensively at the conference. Expanding respite care opportunities and making sure that caregivers have the supplies, training and access to health care for themselves were all topics of discussion. A focus on diversity was also a major theme of the conference. The needs of an African-American middle-aged caregiver may be different than a millennial caregiver from the LGBT community, and programs should be flexible in addressing a diverse population.
More effective communication was a recurring theme in all of the sessions I attended. Caregiving professionals expressed the need to reach family caregivers before they burn out. Establishing that communication early on, starting in the doctor’s office, is key. Many medical professionals said that they don’t have the resource information they need to distribute to the family caregivers who walk through their doors.
Family caregivers will need to continue to speak up and speak out while advocates continue to champion our cause. If you are a designated caregiver, insist that medical professionals keep you involved in your loved one’s care plan. Don’t be afraid to ask for training or assistance when it comes to performing medical tasks at home. And though it may sound downright impossible, don’t ignore your own health and well-being. Even an hour away at the coffee shop enjoying a good book while a neighbor or friend watches your loved one can make a difference. Join a support group or caregiving coalition. There are online outlets as well as in-person groups.
I can’t think of a stronger group of people to deal with a crisis than current and former caregivers and their advocates. Let’s keep fighting.
When a loved one dies, we often go into cleaning mode. There is an urge to bring order to a world that has been turned upside down. I began cleaning out my mother’s condo the same day that she died. I was desperate to stay busy, to wear my body out with exhaustion as my mind reeled from the profound moment I had just experienced. After a cleaning frenzy, I certainly was exhausted, but dismayed at how much remained.
My parents weren’t hoarders, but they came from a generation that was reluctant to discard of household goods. I was fortunate in some respects that my parents had always lived in small quarters, whether it was an apartment or the retirement condo, but a lifetime’s worth of stuff was still formidable to assess. Over time, I have made significant progress. The local Humane Society took my parents’ sofa and recliner, and I found a lovely woman via Care.com who picked up several boxes of donations to take to a church thrift shop where she volunteers. My mom would be pleased that everything from Avon dish collections (which she received from her brother and never used) to my childhood toys will have new homes.
Almost two years after her death, my mother’s clothes still hang in the close, as do my dad’s clothes, and he died five years ago. Furniture and books also remain. What happened?
It’s not sentimentality, as I long ago selected keepsakes from each of my parents that hold special meaning. It’s been difficult to find the rest of the items a home. Other families are running into the same issue.
As a Next Avenue article bluntly put it, “Sorry, nobody wants your parents’ stuff.”
I don’t have children, but even those who are parents will find that younger generations are not interested in acquiring “stuff,” especially when that stuff includes heavy furniture and book collections that will hinder their much-beloved mobility. While furniture, artwork, and books used to be family heirlooms, handed down from generation-to-generation, for younger people, these items are seen less as treasures and more as burdens.
As a Generation X member, I’m somewhere in-between in my love of old family items. I have a few such pieces in my home, but I’m not a collector. Even if I wanted all of my parents’ stuff, with their condo in New Mexico and my home in Georgia, the logistics and cost wouldn’t be worth it.
Family caregivers may end up babysitting their loved one’s stuff long after their family members are gone. For those who can afford it and need to move items quickly, there are estate liquidation companies and senior move managers who can offer tips on downsizing while your loved ones age in place. For others, especially those in rural communities, unloading household items can be more of a chore.
Charities that accept donations such as clothes and furniture often have a higher standard for quality than one might expect. They are not meant to be dumping grounds for junk, and they have every right to refuse items. My parents’ wardrobe, heavily worn and hopelessly out-of-fashion, would not make the cut at many charity-operated thrift shops.
Items like my parents’ bed are beyond well-used and simply need to be disposed of, but that is easier said than done in a small town. In Atlanta, when I want to get rid of junk, I simply used one of the many junk removal services. Some even provide same-day service. But no such service exists in my parents’ small town, and classifieds, online and in the local newspaper, have not been helpful. Unlike Atlanta, the town’s sanitation service does not offer a bulk rubbish day where heavy items can be left by one’s household trash for pickup. Everything would have to be trucked to a landfill. I asked a local home renovation company who was giving me quotes on repair projects for suggestions, and even they didn’t know of a local resource.
There are options which I’m going to explore. One option is donating clothing to nursing homes. My father wore mainly donated clothes during his time in a memory care center, because the distance was too far for my mother to bring laundry back and forth, as some family members did. Of course, there are no nursing home near where my parents live, so that would mean transporting the clothing.
Another option is to use a service like Goodwill’s Give Back Box which accepts most items (refer to website for restrictions) and provides a free shipping label. In my case, because USPS did not provide mail delivery to my parents’ condo, I would have to bring such boxes to a post office or shipping center.
My father loved the local library so I may be able to find a home for his books there.
Unlike some families who are selling their parents’ home and are forced to clean out quickly, I have the luxury of time as I maintain ownership of the home. The old mattresses and box frames are stacked in a bedroom, collecting dust but out of the way. The books are boxed up. The clothes are doing no harm hanging in the closet. While I’m still eager to finish the job, once everything is gone, I wonder if I will have a pang of longing for what is no longer there.
Maybe the younger generations have it right. Hang on to the important things, the memories of time spent together with loved ones, captured in a neat and tidy digital form. Let go of materialistic goods that do not bring joy or have special meaning. It will certainly make the purging process less painful.
A new year means a new emphasis on resolutions, life goals, and marking things off that bucket list. As caregivers, we may find ourselves abandoning our own dreams to help an ill relative tackle their own bucket list. Is there a better way to achieve fulfillment? One doctor believes so, and I tend to agree.
My father always wanted to visit his homeland of Belfast, Northern Ireland one more time before he died, but he never made it. A fear of flying, and the expense, kept him from going before Alzheimer’s wormed its way into his mind. My mother loved The Bucket List movie starring Jack Nicholson and Morgan Freeman, but never professed having her own list. There was a year-and-a-half of decent health before her cancer returned, and I wish we could have spent that time traveling and engaging in activities that would have brought her joy. After quitting my job to take care of my mother, I found myself mired in what seemed to be a fruitless, never-ending job search, and with family finances quickly dwindling, traveling was out of the question.
Caregiving is disruptive by nature, forcing many of us to quit a job, move, or shake up our household to accommodate a loved one needing assistance. Life goals, resolutions, and bucket list items often get kicked to the curb. As a caregiver, I often felt like I was lucky to just be surviving; thriving was out of the question.
I recently read an article titled, “Kicking the bucket list mentality,” in Aging Today by Marc E. Agronin, M.D., a geriatric psychiatrist. Agronin suggests a retooling of the bucket list concept that focuses more on aging with a purpose. Instead of focusing on what we can do as we age, we may be better off focusing on what we can be. A tropical cruise or trip to Europe offers instant gratification, but taking up a hobby like painting or performing volunteer work may offer deeper engagement and more sustained satisfaction. Agronin uses a real-life example involving patients to illustrate that waiting to do a grand item on a bucket list can have consequences. An older couple who had planned for years to ride motorcycles together across Florida encountered terrible weather and a rough ride, resulting in the need for medical attention. It’s not that people should stop taking dream vacations; just be aware that the caregiving life may take them down a different path.
It can be difficult to maintain some semblance of a life while managing the overwhelming duties of being a family caregiver. You may have to put that dream of a Paris trip on hold, but you may find time to take a virtual tour of the Louvre or learn some French with the help of an app. I’m working on my dad’s family history so that when I’m able make that trip to my father’s homeland, it will have a greater purpose than just sightseeing.
When I was caring for my mother during the last month of her life, sometimes the only beauty I saw was a ray of sun hitting the sun catcher in the kitchen window just the right way, the massive wingspan of a crow flying overhead or a family of deer tiptoeing through the brush. Though I could have easily overlooked these humble moments of beauty, I found myself aching for them. To kick the bucket list mentality, we need to take advantage of moments of splendor in the here and now, the only moments we are guaranteed to have.
Photo credit: MMAARRSS/Morguefile
A visit to the dentist is sometimes met with dread, but our mouths tell us more about our health than we may realize. I gained insight into the importance of oral health in my years as a caregiver for my parents.
Our family always had lousy teeth; some of my earliest memories are of going to the dentist. My dad avoided the dentist like the plague, but my mother dutifully spent many hours in the dentist’s chair. As a kid, I didn’t mind going to the dentist, because there was a huge chest of toys to choose from once the visit was over. At my mother’s dentist, there were homemade cookies! Through most of my adult years, my visits to the dentist were few and far between, but now I begrudgingly maintain regular visits, after suffering a chronic oral health issue and witnessing the complications oral health problems had on my parents.
A study published in the September 2016 edition of the Journal of the American Geriatrics Society found that periodontitis is associated with a greater risk of dementia. The study was of interest to me because I have periodontal disease and my father had Alzheimer’s. Because of Dad’s aversion to dentists, there is no way to know if he suffered from periodontitis, but he preferred to eat soft foods and seemed to have tooth and gum sensitivity. In the last months of his life, when dementia caused him to forget how to swallow, it made me realize just how much we take our mouths, and its many functions, for granted.
Oral health can be tricky to manage in dementia patients. Visits to the dentist, which already stoke fear in some people without dementia, can be disorienting and frightening to those with dementia. It can be difficult for those with dementia to follow orders, like keeping their mouths open or staying still for X-rays. But those with dementia need regular dental visits because they often cannot communicate when there is a problem. I know a woman who was shocked to learn that her father, who had dementia, had squamous cell carcinoma on the tongue. It went undetected at the assisted living facility, and took several months and multiple doctors to even reach a diagnosis. The issue went undetected even during an annual physical. Her father’s outward symptoms were weight loss, drooling and garbled speech. Her father was able to tell her that he was having trouble swallowing, but by then, the tumor had grown too big for treatment. He died just a month after diagnosis.
In the last years of her life, my mother had difficulty in getting her dental partial remade to conform to her shrinking gums and bone. While she was a trooper about it, she gave up healthy items she enjoyed eating, like raw carrot sticks, because of the ill-fitting dental device and her lack of remaining teeth. During my mother’s recovery from a colostomy, she developed serious blood clots that required her to be on blood thinners for several months. This can complicate some dental procedures that may cause bleeding. I was used to bringing a list of Mom’s medications to medical doctors, but I quickly learned that her medical history was equally important at the dentist.
When I was actively caregiving, I ignored my own health. I had to quit my job, and purchased a catastrophic-only health insurance policy, which was all I could afford at the time. I was grateful to have maintained decent health during my caregiving time, but knew there could be a price to pay afterwards.
I never experienced the common symptoms associated with periodontal disease, like gum bleeding and sensitivity. I had no symptoms whatsoever. The year before, I had undergone a root canal for a tooth problem that also caused no symptoms. After skipping the dentist for so many years, I was suddenly seeing a dentist, an endodontist, and a periodontist. I started out with some pockets of 7 millimeters in depth, so my periodontist took an aggressive approach to get it under control. I went through a scaling and root planing procedure, and now I get my teeth professionally cleaned a few times a year. I floss daily. The periodontitis is now under control, but I know it is a chronic condition that will require vigilance.
Every time I think about skipping a cleaning appointment, I think about how my parents suffered with their oral health. Most of these problems can be remedied with regular treatment. I have a job with good dental health benefits now. I have no excuses. We sometimes take our oral health for granted, but it is important for us to mind our mouths, and those of our loved ones who may not be able to actively participate in maintaining their own health due to conditions like dementia.
Photo by Marcelo Terraza/Freeimages
Making modifications to the home can help your loved ones age in place, a goal of an increasing amount of families. There are plenty of resources online that offer checklists and other pieces of advice that cover the most common modifications. With hindsight being 20/20, here are the aging in place challenges I encountered when caring for my parents.
Don’t wait until there’s a family health crisis
I waited until my parents had major health issues before seriously considering their home situation, and how it complicated aging in place possibilities. If I could do it over, I would try to gently steer my parents into a more suitable retirement location. I think my parents could have thrived in a continuing care retirement community, or something similar. My parents maintained their independence well into their 70s, but then the health issues came in a fell swoop.
Aging in place is not just about home, but about community
Ruidoso, New Mexico is a lovely mountain town with genuinely nice, helpful people. My parents enjoyed their retirement there, until they became ill. Here are some things to keep in mind when your parents or other aging loved ones announce a retirement move:
- Local transportation options: Ruidoso gets snow, and some of the winding roads can be tricky to navigate. My parents’ condo was also atop a moderate hill. My dad was not a confident driver and had never driven on snow before. This meant my parents were stranded for days sometimes if a big snow fell. On the other hand, the town offered a reasonable door-to-door shuttle service for seniors. This helped my parents maintain their independence. Keep in mind that your loved one will likely not be able to drive forever and getting rides from friends and family is not always convenient.
- Is there access to quality medical services? This is so important, and had a tremendous impact on my parents’ final years. Smaller, rural towns may struggle to attract enough quality healthcare providers. This can lead to long waits for appointments, overworked doctors and delayed or incorrect diagnoses. More advanced diagnostic tools like PET scans may not be available locally and will require lengthy travel to have performed. Home care can be woefully overstrained, and access to nursing homes and memory care centers may be extremely limited or non-existent.
- Social engagement benefits: My parents were friendly, but kept to themselves, so they didn’t have a social network to fall back on when needed. Gauge your loved one’s community engagement in things like church, volunteer groups, and neighborhood associations, as it can facilitate help with rides to doctor’s appointments, shopping, etc. Friendly neighbors can watch out for each other and create a safety net for someone in declining health. Don’t overlook these valuable resources, and make sure that if you take advantage of them, to give something in return.
- Convenient for family members to visit? Encourage retirement options that offer reasonable access to an airport. To get to Ruidoso from Atlanta, I had to take two planes and an hour-and-a-half car ride, or one long plane trip and a 3-hour car ride. Neither of those options are convenient or cheap, and with the time changes, just traveling to and from my parents’ condo is an all-day affair. As a long-distance caregiver, you’ll find the need to make more frequent check-up visits and you don’t want to be wiped out before you even arrive.
About those home modifications
- Falls are a big deal: If you feel overwhelmed in making aging in place modifications, start with reducing fall risk. These modifications can be as simple as adding sturdy grab bars in bathrooms and removing throw rugs and other common trip sources from the home. Proper lighting is also important, as is making sure commonly-used items are easily accessible without getting on a step stool. In Mom’s condo, I installed grab bars and a shower bench in the bathroom. Consider getting a fall alert system. There are different companies that offer monitoring services, so research to see which ones are available in your area. I found the service was reliable and effective, and worth the monthly fee. If you are a long-distance caregiver, getting a system like this can give you a bit of peace of mind.
- Reverse kid-proofing: Think safety above all else, whether it comes to labeling things in clear, large print or securing items that could prove dangerous, like medications and stove burners. This is especially true when modifying the home for someone with dementia. My dad “ran away” multiple times from the condo, and that could have been prevented if we’d installed special locks and other deterrents. GPS-based locator tools can track a loved one with dementia who goes missing.
- Don’t forget maintenance tasks: I had an embarrassing realization recently. While taking care of my mother, I never changed the furnace filter. Likely years went by without it being changed. Yet in all that time, I never forgot to change the filter in my own home. Caregiving can give you tunnel vision; set up reminders or hire a local company to handle such tasks. The water heater at my parents’ condo is in an unbelievably tricky location under the house that requires one to crawl through a space several feet off the ground. The circuit breaker is located in the back of a storage room outside the condo, which has proven difficult to open. Ideally, these things would be easy to access for maintenance and in case of emergency.
- The home’s exterior matters: My father was not allowed to return home from the skilled nursing facility after major surgery because of the stairs. He never saw home again, as he was placed in a memory care center. Dad lost the ability to walk and the condo had a dozen steps to the front door and wooded, uneven ground that led to the back door, with three steps. A paved path around back may have been possible, but it would’ve had to go through the home owners’ association and Dad was rapidly declining. My mother also was wheelchair-bound after a surgery with lengthy complications. With two months of rehab, she could walk on her own again, and this made a huge difference in her being able to return home. Her condo was small and a walker would have been difficult to navigate the narrow hallways and bathroom. Make sure the paths to the mailbox, garden and any other often-used outdoor areas are safe to access. Aging in place modifications should make the home safe, comfortable and enjoyable for many years to come.
What are your tips on making the home safer as we age? Share your ideas below.
No matter what the outcome of the 2016 presidential election is, caregiver advocates will continue to push for greater support and recognition. A recent report called family caregiving a “critical issue of public policy.” This is an exciting and frustrating time for me.
That’s because there are so many issues to address when it comes to improving the lives of caregivers and those who they care for. Caregivers, both professional and family, are starting to make their voices heard. Tired of being taken for granted by family and under appreciated by society, caregivers are seeking recognition through legislation.
In the past, family leave has been mainly focuses on new mothers, but thanks to the work of caregiver advocacy organizations, politicians and corporate leaders are starting to realize that it’s just as difficult to take care of your elderly mother with dementia as it is a newborn daughter while working a full-time job.
Some forward-thinking private companies are offering solutions. Deloitte made headlines in September after they unveiled a revamped family leave policy, which includes eldercare. Employees will be eligible for up to 16 weeks of fully paid leave. According to a survey Deloitte conducted, 88 percent would value their companies expanding family leave policies. Deloitte is not the first company to take eldercare seriously; Fannie Mae is considered a pioneer in the field, offering a robust eldercare benefits program that it began in 1999.
To me, expanding paid leave for those caring for aging relatives is a no-brainer. The current federal program just doesn’t cut it in my personal experience. Some states offer their own programs with varying restrictions, but a consistent federal guideline would help ensure everyone is covered.
The Family Medical Leave Act (FMLA) was a decent step forward in legislation, but the law comes with many caveats that can make it difficult to access. Among the rules: you have to be employed with the same company for at least a year and that company has to have 50-plus employees. It offers a maximum of 12 weeks of unpaid leave annually. The law fails to cover roughly 40 percent of the workforce and while it offers job protection and health insurance coverage, how many people can afford to lose 12 weeks of pay?
I tried using FMLA while my father was hospitalized near the end of his life and found the paperwork to be excessive, at a moment where I had little time to deal with red tape. I was rejected the first time because the government wanted more proof from the ICU doctor that my dad was really in intensive care. My father had already been moved to a different city and hospital by that point and after multiple calls back to the old hospital to try and get the proper form signed and faxed with no success, I gave up the fight. I used up vacation days and took unpaid leave for the rest of the time I missed from work. I also made the decision to return to work sooner than I would have if FMLA had been approved. My father died while I was at work.
In my mother’s case, FMLA was not available to me because I had just started a new job. My mother’s illness came out of the blue, unlike my father’s dementia. After being unwilling to seek new jobs while my father was alive because of his precarious health, I thought I had the green light to move my career forward after his death. That all came to a crashing halt when my mother was diagnosed with stage III colon cancer and required emergency surgery and months of rehab. As an only child with limited family resources, I had to quit my new job to take care of my mother. Even after she recovered, I remained severely “underemployed” for a year before finally securing a full-time job. In spite of rosy jobs statistics, the job market can still be tough, with many jobs being part-time with no benefits.
One thing is for certain: we as caregivers should not feel guilty about asking for support. According to a 2015 AARP study, family caregivers provided $470 billion of unpaid care in a single year. Those 37 billion hours of care didn’t come without a cost to family caregivers. In 2014, over half of family caregivers surveyed said they spent over $5,000 annually, and many of us spent much more than that, especially those caring for those with dementia. Of course, there’s not just a financial cost; caregivers are also at increased risk for stress-related illnesses and depression. Increased caregiver health issues put more strain on the country’s already thinly-stretched health care resources. Supporting caregivers is not a handout, it’s smart public policy that will have a ripple effect across multiple sectors.
Family caregivers should not have to choose between a job and caring for a loved one, or a steady income and saying goodbye to a dying relative. If anyone deserves peace of mind during a difficult time, it’s family caregivers. Knowing that you won’t lose your job, or go bankrupt while tending to a family health crisis should not be reserved for a “fortunate” few, but a standard we strive to deliver to everyone.
If you are a current caregiver who is worried about your financial future and taking good care of your aging parents, don’t despair, as there are many people advocating on your behalf. Now that both of my parents are gone, I have made helping other caregivers a top priority. Changes won’t come overnight, but by staying involved in communities like The Caregiver Space, Caregiver Action Network and the Family Caregiver Alliance, and sharing your story with others, we can help move the conversation forward.
The last thing you may feel like doing when you are actively caregiving is engaging that creative spark. Heck, if you were creative before caregiving, you may believe that your creative fire has been extinguished forever. Be open to opportunities for expression during and after your caregiving journey, as the creative act can be healing.
I had big plans to document my caregiving experience with my mother on social media. I had quit my job to take care of her, so I thought I would have time to launch a campaign. A few colostomy bag changes in, along with managing medications and doctor’s appointments, I realized caregiving itself is a full-time job. With the physical and emotional demands, I was lucky to scribble down quirky things my mother said or particularly good or bad situations for later examination.
When your caregiving episode comes to an end, there may be a lot that you want to express. Many would settle for a sense of normalcy, a return to their pre-caregiving life, however, some people may find something off-kilter in the new normal of a post-caregiving world. There is grief, of course, but there also may be an identity crisis.
No matter our age, becoming parentless is still painful. Those who lose spouses find themselves navigating the world without their better half. On top of that, some of us may feel a loss when surrendering the caregiving role. While often challenging, caregiving can make us feel needed and a crucial part in someone’s life. When that person no longer needs our services, whether because they return to good health or they depart this world, what becomes of us?
Talk therapy or support groups can be beneficial and so can seeking a creative outlet. For me, that is writing. I know a former family caregiver who is an artist and is capturing her father’s dementia battle with an illustrated memoir, featuring her own illustrations. One blogger I know creates memory bears for other families who have lost loved ones. Another blogger I follow writes poetry, while others have turned to collecting their family’s history for future generations.
Don’t think you are creative? Think again. Photography, scrapbooking, music, gardening, dancing: there are so many ways to express yourself creatively. Afraid you are not good? There is value in anything we create from the heart. Your creative output can stay behind closed doors, but if you do decide to share with others, it can be a rewarding experience.
I recently attended a week-long writer’s retreat in New Hampshire, a trip that never would have been possible while my mother was alive. Now I can travel without having to worry if I have a cell signal to check in with Mom daily. I can leave my phone behind to go for a leisurely walk, without worrying that I might miss a phone call from my mother or a doctor. Of course there are times when I wish I could just have one more phone call with Mom, but trips like this make me appreciate the value of truly being able to unplug and recharge.
Because there are over 40 million unpaid caregivers according to the 2015 Caregiving in the U.S. Report, it’s no surprise that other people in my writing workshop had caregiving stories of their own, even if they weren’t there to write about them like I was. From caring for spouses, to children and parents, my writing group members and myself shared aspects of the caregiving experience with one another. Our teacher said on the last day of class that caregiving is something that most everyone will have to deal with eventually, and that’s very true.
You may surprise yourself, in that you may be more open to exploring repressed feelings and experiences with a group of supportive strangers than your own family. Sometimes other family members may be too close to the situation, and there may be other resentments or grudges burdening the relationship. While writing workshop teachers often encourage students to dig deep, because the truths often are buried well beneath the surface, you are always in control of how much you want to share with the group. Creating from a source of deep emotional pain can be overwhelming; it is not unusual for a writing group member to have to abandon writing about a difficult issue for a period of time. Be prepared to challenge yourself but also set personal boundaries so you don’t relive traumatic experiences.
There were more than a few tears shed in our writing workshop, but it was a powerful and uplifting experience overall. When I stood in front of the group on open reading night and orally documented the last month of my mother’s life in devastating detail, it was an emotional but cleansing act.
As caregivers, we gain so much insight into human nature at its rawest core, as we watch our loved ones exhibit tremendous resolve in battling diseases, and even greater courage in facing death. It’s no wonder we may have a few words of wisdom to pass along.
Photo: Rhiannon Danae/Morguefile
As I share my experiences of being a caregiver for my parents, I find myself constantly questioning how many personal details I should be revealing about my parents’ medical conditions. While common decency frowns upon TMI (Too Much Information), in the caregiving world, is there really ever such a thing?
For caregivers just starting out on a journey that may seem confusing and frightening, knowledge is power. As those who have been through it know, caregiving is messy by nature, and I’m not just referring to bodily fluids. It’s emotionally messy as well, and it is easy to become a bit numb to details of a disease that would shock a newcomer.
But the more I write and the more I read other caregivers’ stories, I realize shock and awe isn’t necessarily a bad thing. Americans need a wake-up call when it comes to the needs of a rapidly aging population. I read a very honest, poignant essay about a son taking care of his mother with Alzheimer’s, and how isolated and unsupported he felt, along with healthy skepticism of federal and state programs designed to help caregivers. He admitted that he was not one of those people who viewed caregiving as a privilege, but more as a necessity. Not everyone who feels this way would have the guts to admit this, but I can relate. This does not make him a bad person or a bad caregiver. It makes him human.
When I share the good, the bad and the downright ugly of my caregiving journey, it’s not intended to demean or denigrate my parents, who are no longer here to defend themselves or offer their side of the story. I’m opening up a window on my little family so that other caregivers can hopefully gain insight and perspective. Without reading about the experiences of other caregivers, I would have felt hopelessly lost.
How you share your caregiving experience with others is completely a personal decision between you and your family, and you should not feel pressured to divulge anything you are not comfortable in sharing. For some, sharing details about the caregiving experience is cathartic and valuable to others. You don’t need to reveal every grim detail with the world; sharing a rough day with a friend over coffee can also be healing.
Our connected world allows us to learn about a diverse array of caregiving experiences from people we will never meet in person. I’ve watched documentaries and read memoirs on everything from soldiers with PTSD (Of Men and War), to a young doctor dying from lung cancer (When Breath Becomes Air) to a young man with ALS (Hope for Steve.). While often emotionally difficult to experience, I always gain some insight into their daily lives, and how much effort it takes to strive for some sense of normalcy, both for the person with the medical condition and their caregivers. Normal becomes a fluid state of being, sometimes by the moment. I’m also moved by the resilience of humans, the love that we can express for one another even in our darkest moments, and the painful wounds, physical, emotional, and psychic, that so many people are silently enduring.
For me, sharing stories about my father standing naked in the shower, with a soapy head that looked like a foam turban, asking my mother, “What’s next?” is a meaningful share. Alzheimer’s moves at a different pace for every individual, but a breakdown in being able to complete simple tasks is a hallmark. While in the early stages, Dad could take a shower with just a reminder, by the middle stages, Dad needed help with each step of the process. By the time he was placed in a care center, he required help with all activities of daily living (ADLs) which proved too much for my mother to be able to handle by herself.
While I feel a pang of protectiveness at revealing such intimate details, I think it is important that people understand just how involved Alzheimer’s caregiving is for family members. While my dad was a private, modest person, in no way am I trying to mock him by sharing such stories.
The same goes for when he got into a physical altercation at the memory center when he wandered into another resident’s room and had a bowel movement on the floor. Certainly this is a humiliating episode, but not that uncommon for those with Alzheimer’s. My point in sharing such a story is to let people know that memory care center staff members cannot watch each resident 24/7, so family members need to be prepared for calls such as a resident has fallen, gotten into an altercation, or was caught in bed with another resident. These kinds of unfortunate events may make us cringe for our loved ones, but it is something that we need to be prepared to handle.
My mom’s illness, colon cancer, was physical in nature, and as anyone who has dealt with a colostomy bag can vouch for, things can get messy. One of my mom’s most memorable lines when she was recovering from colostomy surgery at the skilled nursing facility was when I asked her how she was doing and she said, “Well, I spent the night picking vegetable broth out of my crotch.”
Go ahead and laugh, I did.
Again, some might cringe at revealing such an intimate detail, but I think it’s important for people to understand that many skilled nursing facilities are understaffed and many are not trained on how to manage colostomy bags. My mother’s bag leaked after it was put on incorrectly, causing the spilled broth episode. Sadly, worse things happen in care centers, and the fact that my mother was with it mentally and in good enough spirits to crack a joke was reassuring.
So I will continue to share my “dirty little secrets” as a caregiver, in hopes of connecting with others going through similar circumstances. Sometimes, just learning that others are out there fighting the good fight can make a caregiver feel less isolated.
Photo credit: Stuart Whitmore/Morguefile
Finally, I can see the light.
I’m slowly but steadily climbing my way out of a mountain of debt that I accrued as a caregiver.
The financial burden of being a caregiver can be devastating, but it is often overlooked. We don’t like to talk about caregiving in dollars and cents, because acts of compassion are priceless, right?
Well, not quite. Doing the right thing morally can destroy you financially.
Caregivers shouldn’t be forced to choose between family duty and financial stability. A new University of Pittsburgh study, “Addressing the Needs of Caregivers at Risk: A New Policy Strategy,” outlines the grim realities caregivers currently face, while offering suggestions for policy improvements. According to the study, family caregivers provide over 90 percent of the long-term care for 12 million Americans, yet lack access to meaningful financial resources and helpful programs like flexible working schedules.
In five years as my parents’ caregiver, I racked up over $20,000 in credit card debt. I burned through my modest savings and drained a Roth IRA before tapping into my parents’ savings. I was a few months away from tapping into my 401K before my financial situation began to improve.
In many respects, I was fortunate.
Initially, the additional expenses I incurred as a long-distance caregiver were manageable. My parents retired to New Mexico and I live in Georgia. After my father was placed in a memory care facility, I paid for what the monthly fee didn’t include, such as adult diapers and nutritional drinks. Even with my father’s Teamsters pension and Social Security, there was not enough to cover the over $4,000 monthly facility payment, so after exhausting dad’s limited savings, my mother was forced to dip into money she had won from a lottery jackpot. After taxes, the amount totaled about $60,000, and over half was spent on my father’s medical care.
Without that windfall, I have no idea how we would have paid for dad’s care. My dad was too much too manage at home, and the condo, which my parents were still paying for, was not suitable for a person with dementia. Like many seniors, my parents’ savings were meager and they lived modestly on their retirement benefits. I could have shouldered some of the financial burden, but it would have stretched my budget thin.
My father died five days before Christmas in 2011. While of course there was mourning, there was also a sense of relief. My father was finally free of Alzheimer’s grip, my mother still had enough money to live on, and I would be able to pay off my modest debt quickly.
Six months after my father died, my mother became ill.
In a stroke of terrible luck, I had just started a new job, which wiped out any opportunity for Family and Medical Leave Act benefits. Even with FMLA, my mother’s slow and bumpy recovery would not have covered the time that I would have required to be away from the job. Don’t assume FMLA is a given; the law comes with many rules and restrictions.
My mother was diagnosed with stage III colon cancer and required emergency surgery. Her recovery was going to require me to be present as her full-time caregiver, so I quit my new job. The job was not structured in a way that would have allowed me to work remotely on my own schedule, so I felt I had no choice but to resign. I had no idea how I was going to take care of her and pay my own bills, but there was little time to dwell on my financial future; I was in pure, raw survival mode.
Like many Americans, I had nowhere near the six months to year of living expenses in savings; I had a few months at best. I take responsibility for that, though I was using any extra money I had to pay off debt accrued over my father’s final year of life.
That summer, I essentially lived on credit cards. My mother was hospitalized an hour and a half away from her home and remained there for two months during her recovery. As my mother’s designated health care agent, I spent many nights in nearby hotel rooms in order to be readily available as medical issues would arise without warning. I also paid for my mother’s medical expenses that Medicare didn’t cover, such as the daily coinsurance for the skilled nursing facility that kicked in after day 20.
My mother returned to her condo in the fall of 2012 and I stayed with her for a few months to help her get situated, scraping together spending money by writing articles. I am fortunate that I have a skill that allows me to work remotely and earn a bit of income and strongly suggest that other caregivers tap into their own skill sets. How much could you earn if you had to move at a moment’s notice and couldn’t maintain a traditional job?
At the beginning of 2013, I was cautiously optimistic. My mother was doing great and I was back home in Atlanta. Surely I would find full-time employment soon, I have always been an excellent employee.
Boy was I wrong.
The brutal job market was for real and there were plenty of talented journalists seeking employment. As the months wore on, my despair grew. I felt guilty using my parents’ savings, and I didn’t want to leave my mother without a nest egg, but I had a mortgage and bills to pay as well. I used as little savings as possible and wrote as many articles as I could to stretch my income. Finally, at the beginning of 2014, I found steady part-time work which a few months later, turned into a full-time gig with benefits.
I began to pay down the debt once again. My mother started to experience abdominal pain in the summer of 2014 which became debilitating over the next several months. Doctors were never able to determine with certainty, but it was assumed that the cancer had returned. I visited more often and made sure my mother had needed supplies shipped directly to her home. I paid for private caregivers to assist my mother with daily tasks as she teetered on the edge of independent living, fearing a nursing home was in her near future.
While emotionally devastating, there was little financial impact this time because my current job allows me to work remotely. That flexibility is huge for a caregiver. I spent the last month of my mother’s life in New Mexico serving as her primary caregiver until she died in May 2015.
I know I was lucky. I was never late on a mortgage payment, though my attempts to refinance due to hardship were rejected. My home didn’t go into foreclosure and I didn’t have to declare bankruptcy. The lights never got turned off and I never went hungry. My 401K, while underfunded, remains untouched. But debt, like grief, lurks like a dark cloud over my life.
The University of Pittsburgh study concluded that the current climate that family caregivers in America face is unsustainable. Family caregivers provide a tremendous resource to this country, providing an estimated value of approximately $500 billion, so caregivers should not feel guilty when accepting government aid. The study suggests options such as tax breaks, grants, insurance benefits and greater access to respite care and flexible work schedules.
The more we share our stories, that caregiving isn’t just some selfless act carried out by angels on earth, but a physically and emotionally draining job with potentially devastating financial consequences, the more awareness will be raised. Legislators need to recognize that aging and caregiving are urgent issues that America must address.
I never expected that my sweet elderly mother would be caught in the crosshairs of the latest war on drugs.
From the White House to the CDC, pain relief in the form of prescription opioids is suddenly Public Enemy No. 1.
The Obama administration has unveiled the Comprehensive Addiction and Recovery Act and the CDC released 12 guidelines it is encouraging doctors to follow when prescribing opioids.
The new guidelines, designed to reduce the rate of prescription opioid abuse, were supposed to exempt those undergoing cancer treatment and for those in hospice.
Those guidelines failed my mother.
For the record, my mother was not a wimp, a hypochondriac, or a drug abuser.
This was the woman who, night after night for three years, mothered the unruly child that my father with dementia had become. She bathed him, dressed him, and kept track of him all while trying to avoid his swinging fist. After he was placed in a memory care center, my mother rode a Greyhound bus an hour-and-a-half each way to visit my father weekly. After one such grueling journey, she fell off the toilet in the middle of the night and broke her shoulder. My mother crawled on her good arm to the bedroom to retrieve her cellphone to call 911. With her injured arm in a sling, she got right back on that bus as soon as the doctor cleared her to travel.
Photo credit: foxumon/Freeimages
My mother was diagnosed with stage III colon cancer and survived an emergency colostomy, but took months in rehab to deal with blood clots and other issues. Her prescription for low-dose hydrocodone was part of her post-discharge medication plan. My mother only took it as needed, and used over-the-counter pain relief medication in lieu of it when possible. The only side effect my mother experienced with her long-term use of opioids was constipation, which is a common complaint and can be managed.
When my mother began to experience abdominal issues two years later as the cancer had likely returned, it was accompanied by pain that at first was nagging but quickly escalated to excruciating. OTC medication was clearly not going to relieve this kind of pain.
My mother was warned by her doctor’s office about the new Medicare rules for opioid prescriptions. She would need to make a doctor’s appointment each time she needed to refill her hydrocodone prescription and she would be required to pick up the prescription in person at the pharmacy, instead of home delivery. These may seem like reasonable restrictions, but for my mother, it was a burden. While she was able to live independently and was mentally alert, she had no car and relied on the limited public transportation in her small town. The town has very few doctors, meaning it could take weeks to schedule an appointment with her primary care physician. In the winter, bad weather shut down transportation options.
My mother did not abuse her hydrocodone prescription, but took the recommended amount, which still did not effectively manage her pain. I talked to my mother daily on the phone and she was not impaired. With the new rules in place, my mother would ration her medication until she was able to see the doctor. This can be dangerous, leading to breakthrough pain or, on the flip side, increasing the risk of overdosing, if one forgets how much they’ve taken.
Over the next few months, my mother’s pain grew considerably, but her prescription was kept the same and the limits on refills remained. Her appetite decreased, she had trouble sleeping, and completing simple tasks around the house became physically exhausting.
I signed Mom up for home health care as her quality of life was quickly fading. Since my mother was now too weak to consider any cancer treatment options, the main priority for the home health care team was to get my mother’s pain managed. But they faced the same new regulations and found the busy doctor just as hard to get a hold of as my mother did. Even with a registered nurse making home visits, my mother was still required to travel to the doctor’s office and the pharmacy in order to obtain her pain medication.
Just a few months before her death, my mother’s doctor went on vacation for a week, and my mother ran out of hydrocodone. My mother’s cries of pain filled my ears daily. Home health said there was nothing they could do, and I called the doctor’s office, asking if another physician could see my mother, but no one else was available. My mother was told to take Aleve.
For intractable cancer pain? Are you kidding me?
It was a further battle to get my mother enrolled in hospice, where she only lasted a few weeks. For the last two weeks of her life, she was finally granted the morphine that helped control her pain and allowed her to rest. The irony? We ended up with three unopened bottles of morphine after my mother died, and those had to be disposed of due to government regulations. The nurse said that it was a shame, because morphine can be difficult to acquire in rural areas.
I hope all of this government fanfare around prescription opioids pays off, because my mother suffered dearly for it. I fear that other innocent people are suffering silently while smug government officials pat themselves on the back.
My mother came from a generation that did not question the authority of doctors. She would rather suffer than be seen as a nuisance. As a long-distance caregiver, I hounded the doctor and home health agency by phone but felt like I was constantly running into a wall of bureaucratic indifference. I feel that I failed my mother in this last act of compassion that I could have provided her as her caregiver. I live with that feeling of failure each and every day.
While I fully support the creation of a non-addictive pain medication and alternative pain treatments, people are suffering right now, and managing their pain should not be ignored while the government searches for the miracle painkiller. Of course people should be made fully aware of the serious side effects and addiction risk associated with opioids, but ultimately, individuals should be allowed to make an informed choice with their doctor about what’s best for them.
The only parent-child conversation more excruciating than the birds and the bees is the death talk.
In a fantasy world, our parents would record their end-of-life wishes in a legal document and set aside a good chunk of change for funding. They would include a list of pre-approved retirement communities, or they’d retrofit their home to age in place and set aside money for caregivers if necessary. If Mom wants her casket lined in hot pink velvet with sequins, so be it, as long as it’s on her dime.
But aging is a messy and convoluted affair that people don’t like to plan for or discuss. Most Americans prefer to keep their heads in the sand about the matter and then fall apart when the inevitable happens. End-of-life experts estimate that just 20 to 30 percent of Americans have advance directives.
What I’ve come to learn after the death of my parents is that preparing for a loved one’s departure from this world is the final, great act of love you can show that person.
Death isn’t just for old people. Accidents and unexpected illness can strike at any age, triggering a series of important medical decisions. That’s why I suggest discussing such matters as early as possible.
As a lifelong worrywart, imagining worst-case scenarios came natural to me, yet I took few concrete actions ahead of time to ease the stress of a family health care crisis. I regret that now, as the lack of planning caused my mother and my father to suffer needlessly at the end of their lives.
My parents demonstrated remarkable steadfastness in their denial of death. Dad would not discuss the subject at all. Mom’s reaction to my feeble attempt to have the end-of-life talk was a common one: “We’re not dead yet!”
My father’s Alzheimer’s made me realize how important timing is for end-of-life discussions. Alzheimer’s chips away at the mind, so by the time the family realizes there’s a problem, the person may not be of sound mind to make health or financial decisions. My father never got around to completing his advance directives or a will, and that meant my overly optimistic mother was in charge of his medical care and I had to spend the year after my father’s death in paperwork purgatory, in order to gain access to Dad’s assets that my mom rightfully deserved.
There’s much discussion nowadays about having a “good death,” which for many people means dying at home in as little pain as possible. These goals sound reasonable but can be difficult to achieve. My mother died at home, but over the last several months of her life, her pain was poorly managed by her doctor and home health services until she was finally admitted to home hospice care. In retrospect, I would have pushed for home hospice sooner. Be prepared to be a patient advocate for someone who chooses to die at home just like you would do for someone in a medical facility.
Death is scary because it is the greatest of the unknowns, and planning helps us feel a bit more in control of the situation. Don’t bombard your parents at the next family dinner with 20 questions, but do initiate a discussion. Let them know that if they are unwilling or hesitant to discuss such matters you and/or your siblings will be required to make decisions for them, and it may end up not being what they want.
In addition to all of the basic questions about medical care, housing, finances, and funeral arrangements, make sure to document online logins, passwords, PINs and other data required to access important accounts. These are some additional questions that came up while caring for my parents.
- Are you willing to move to a nursing home if caring for you becomes difficult at home?
- Do you want a ventilator to keep you alive if there’s little chance for recovery from a catastrophic medical event?
- Do you understand what “do not resuscitate” orders mean?
- If you have dementia and forget how to swallow, do you want a feeding tube?
- Will you accept palliative care if treatments fail?
- Do you want supplemental oxygen while in hospice care?
- What financial resources are available to pay for end-of-life care?
- Who will have financial and medical power of attorney?
End-of-life planning is as much for the family’s peace of mind as for the dying person. To be able to refer to a document of your loved one’s wishes will make your life so much easier as a caregiver. You won’t have to make life-or-death medical decisions at the spur of the moment and while in great emotional distress.
There may come a time when you have to divert from your loved one’s wishes. I don’t believe my father wanted to spend his last year in the dementia wing of an assisted living center. But he was becoming increasingly more difficult for my mother to manage at home. He hit her in the jaw while she was getting him ready for bed. He wandered away and the police had to search for him. After he required surgery for a kidney stone, he could no longer walk and was sent to a rehab facility. Alzheimer’s patients make lousy rehab candidates, and so the facility could not release him back home, as my parents lived in an upstairs condo unit. Do your best to honor your loved one’s wishes, but always with the safety and well-being of all parties involved in mind.
Even if your loved ones take proper legal steps to document their end-of-life wishes, you will have to stay on top of medical staff to make sure those wishes are recorded and followed. A 2007 Critical Care study found that only 25 percent of physicians knew that their patients had advance directives on file.
After my mother finally agreed to my dad’s DNR order, the directive failed to transfer from the hospital to the skilled nursing facility. My father collapsed in the shower and an EMT cracked my father’s ribs while performing CPR on his frail body until the doctor got a hold of my mom and she authorized the insanity to stop. Even though I was not present to witness the final chaotic moments of my father’s life, they haunt me.
Make this year the year to have that dreaded talk. When the time comes to put those wishes into action, you will be glad you did.
Image courtesy of shho/Freeimages
You owe yourself something.
We are always so quick to thank others for their kind actions that sometimes we lose sight of ourselves.
Of course we should thank those special people in our lives who have made the caregiving journey a bit easier. Take time to reach out to family members, friends, coworkers, professional caregivers, hospice workers and thank them for their acts of kindness.
I know I always tried to express my gratitude in the moment, but when you are in the midst of a family health crisis, the small gestures of kindness sometimes get overlooked. Take time this Thanksgiving to reflect on those who offered a kind word or a helping hand. Even if you cannot reach out in person, send kind thoughts their way.
But don’t forget about yourself.
Thanking yourself for being a caregiver is not selfish; it’s being kind. It’s acknowledging your accomplishments, your sacrifices, your humanity.
Thank yourself for finding the strength and the compassion to be a caregiver. Thank yourself for not giving up, even when the going got tough. Give thanks for the lessons learned, the failures endured, the triumphs reached.
It is often said that caregiving is a thankless job. Sadly, this is often true. It can be especially difficult for caregivers of those with dementia, who may not be able to express their gratitude anymore. Instead of words, search for a smile, a squeeze of the hand, their eyes lighting up brightly for a moment when seeing you. Take these small acts of gratitude and treasure them.
While taking inventory of your triumphs and struggles as a caregiver, take an honest look at your situation and ask yourself if you need help. There is absolutely no shame in asking for help. You don’t want to burn out. By not attempting to do everything yourself, you’ll actually find that you become a better caregiver.
But don’t wait around for others to recognize your hard work. This Thanksgiving, look at yourself in the mirror and say those two empowering words.
Caregiving is an emotional endeavor by its very nature. When people discuss their own caregiving experiences, or write about them, raw emotions are often shared.
We want someone else to understand what we are going through, as caregiving can be such a lonely and isolating experience.
And while the experience on caregiving support forums is overwhelmingly positive, I occasionally witness caregivers treating each other in not such a caring way.
We cannot continue to do this.
There is so little public support for caregivers that we must rely on each other for emotional support and advice. Personal attacks serve no purpose. We must not become each other’s enemy.
This is not say that in certain situations, especially if someone’s health or life is at stake, that someone shouldn’t intervene. If someone is providing medical care that is potentially putting their loved one at risk, or if a caregiver seems suicidal, steps should be taken to offer immediate assistance. Offering constructive ways to improve a caregiving situation is exactly what online caregiving communities are all about.
Just as in any other walk of life, there are those caregivers who bully and thrive on insulting others. There are caregivers who are know-it-alls, or who had an amazing caregiving experience and think that others who have experienced less ideal situations are solely to blame.
Even doctors and nurses make mistakes. For those of us who are thrown into an instant caregiving situation, there is often a steep learning curve. While for some, caregiving duties come naturally, for others, it is a struggle. The strength of your love doesn’t necessarily mean you will be a fabulous caregiver.
Caregiving is one of the most personal acts two people can share, and each scenario is unique, depending upon the two people’s relationship with one another, the disease they are dealing with, their financial status, and a whole host of other factors.
It is a human instinct to try to relate ourselves to another person’s situation; when we read someone’s caregiving journey, we try to jump in their shoes. We need to remember that even if we think the shoes are of the same or similar size, they won’t fit quite right. That’s because each of our narratives are unique to our own experiences.
Caregiving isn’t a contest, but some people treat it as such, boasting about how well they handled caregiving duties, or about how they gladly quit their jobs to take care of a loved one, or how they would never put their loved one in a nursing home.
Is there really any need to weigh down caregivers with more guilt than they are likely already feeling?
Perhaps by cutting down others, by being so adamant about “their way” being the only right way, these critical caregivers are trying to work through their own demons. Perhaps there is resentment for those who don’t sacrifice their family, work, and life to be a caregiver. Perhaps these caregivers are simply burnt out after giving so much of themselves, and have little patience for other caregiver’s seemingly petty issues.
But the last thing a caregiver needs is more conflict!
Caregivers of elderly family members are not alone when it comes to personal attacks; I’ve seen it happen in a variety of health-related forums, especially hot-button topics like autism, vaccines and food allergies. (“My kid’s food allergy is worse than yours!”)
By all means, we should give our honest opinion when commenting on something that is important to us. I offer a raw, candid take on my experiences as a caregiver even though I know some will find it controversial or disagree. A lively debate can be truly educational, and the freedom to express opinions is a cornerstone of democracy. But take a moment before hitting submit on a comment, and think about the person that wrote it. Consider how that person will feel if he or she reads that comment.
Maybe this person is facing a barrage of criticism from family members and is seeking a sympathetic ear. Maybe they just wanted to vent their frustrations, and thought they were in a safe space to do so. Maybe their issue is petty and they have some growing up to do when it comes to being a caregiver.
Let’s not be nagging parents. Try to encourage, instead of lecture. Say the words you’ve written down in your comment aloud. Would you say them to the person’s face?
On the flipside, anyone who engages in online communities of any sort needs to develop a thick skin. Having a thick skin can also be useful when it comes to caregiving, and some may say even a necessary trait. Don’t let a negative comment drag you down. Maybe that person is having a bad day and is emotionally lashing out, but don’t feel obligated to take on their negativity.
Be kind, and try to surround yourself with kind people.
Photo credit: Roy Mattappallil/Freeimages
When I asked the funeral home director about obtaining an autopsy for my mother, I was met with a long, uncomfortable silence, as if I had asked about arranging a cannibal feast with my mom’s corpse as the main course.
“Do you really want to do that,” he asked, incredulity creeping into the placid tone required of funeral home directors.
Yes, I did want a satisfying ending to the final chapter of my mother’s life. Yes, it was likely that the colon cancer had returned. But how come the litany of tests she had performed over the last several months had shown no signs of cancer?
The hospice nurse was a bit more understanding about my need to know what killed my mom. She then asked me an intriguing question. “What would you do differently if you had a formal diagnosis?”
After watching Alzheimer’s slowly rob my father of his brain, I had genetic testing performed and found that I do carry one copy of the APOE e4 gene, which is believed to increase the risk of developing Alzheimer’s, according to the Alzheimer’s Association.
My mother’s oncologist assured me that because of Mom’s age when diagnosed with colon cancer (75 years old), and no previous family history, the colon cancer was likely just a random misfortune, and not due to a genetic predisposition.
Even if I’m to assume that I’m facing either Alzheimer’s or colon cancer in my future (in worst-case scenario I could end up with both), as the nurse asked, what would I do differently?
I am already pretty darn healthy. I walk every single day, usually at least 2 miles per day. Because I have celiac disease, I already have to watch my diet. I strictly adhere to a gluten-free diet, and have done so for over a decade. I mainly consume a Mediterranean diet, eating a lot of salads, fruit and seafood. I don’t drink sodas or eat fast food, but I eat bacon and steak a few times per year. I don’t smoke, but I do enjoy alcohol and have a bit of a sweet tooth. Am I willing to adhere to a vegan, raw food, alcohol- and sugar-free diet for the rest of my life?
So if an autopsy wasn’t going to directly change my future, why was I so intent for my mother to be sliced open and the mystery of her death to be officially solved?
An autopsy could have determined if the cancer had returned, or if had spread beyond the colon. It also could have put to rest a lingering suspicion that my mom’s sudden, acute symptoms were not cancer-related at all, but some other ailment that was treatable, if she could only have been diagnosed in time.
But, as the funeral home director clearly outlined, an autopsy would be very expensive, and would only offer a very basic overview to determine a cause of death. There would be no deep dive into underlying conditions. The examiner would simply cut into my mother enough to determine a cause of death, and stop there.
So the autopsy would have mainly been to assuage my lingering guilt that I didn’t do enough to help my mother over the last year of her life.
You can’t really put a Band-Aid on pain, as it is both invisible and omnipresent. It is felt with every movement and breath, yet cannot be observed like a bruise or wound.
Yet we had no choice but to continue trying to slap bandages on the pain, because we kept being passed off from doctor to doctor like a hot potato. Mom’s surgeon suddenly moved out of town. It took a month or two to find a replacement, and then Dr. Newbie’s calendar was overfilled with patients. On the day of my mom’s first scheduled appointment with Dr. Newbie, his wife had a baby and he abruptly canceled all appointments. So that appointment was rescheduled, but there was a mix-up, and either my mom got the date wrong or the doctor’s office did. So the appointment had to be rescheduled again, and this time, a big snowstorm moved through the area, and the office was closed the day of my mom’s appointment, while she was stranded in her condo, the steep road impassable.
This runaround went on for months, literally. Mom was becoming weaker, the pain more persistent. She was eating less. She was tired, and getting past the point of hope. She was tempted to just skip seeing the surgeon altogether. Finally, on one of my visits to see her, we finally saw Dr. Newbie.
It was a total disappointment. The unbelievably young-looking surgeon never looked at or touched my mother’s distended abdomen. He instead stared at his computer screen, seemingly surprised, like myself, that all of my mother’s tests had came back negative, showing no signs of cancer.
Dr. Newbie of course ordered a colonoscopy, but also admitted that my mother was in no condition to have one at the moment. So instead, he ordered juicing and herbal supplements to build up her strength and immunity.
While I am supportive of alternative medicine, suggesting that a frail, sick, elderly woman who lives alone should go out and buy a juicer, and then go track down a bunch of organic fruits and vegetables, wash them, and juice them, is pretty out-of-touch with reality.
I bought her a few varieties of organic fruit smoothies, but they gave her diarrhea.
Ditto the spirulina.
I ordered her a liquid calorie booster to put in her food. It ruined the last can of soup she ever ate.
Following the doctor’s orders was short-lived and ultimately pointless. Mom could only handle drinking Ensure and Boost drinks. Those bottles would be her breakfast, lunch, and dinner for the last month or so of her life.
With no hope of Mom being strong enough to endure a colonoscopy, I knew we would never have a definitive diagnosis.
Colon carcinoma is the diagnosis that ended up on my mother’s death certificate. Still, I feel it should have an asterisk next to it. There’s a 95 percent chance it’s right, but I can’t help wondering if there was something else going on, something that could have been fixed.
It’s the $5,000 question that I will never have an answer to in this life.
Though I had been keeping track of my mother’s weight and vital signs like some people analyze the statistics of their fantasy football players, I was still unprepared when I saw my mother’s emaciated body in person. How much weight could one lose in a month?
A lot, when one is in so much pain they can only tolerate liquid nutrition.
And the weight kept dropping off of her, at a rate of about a pound a day. She capped out at 90 pounds before she was bedridden and the home hospice nurses switched to measuring her upper arm circumference.
Still, those scrawny arms would quickly wrap around the hospice nurse for as long as she had the strength.
My mom also suffered from osteoporosis and was deemed a fall risk because of the strong pain medications she was taking. She would cry out when I or the hospice nurses would try to move her in bed.
I proceeded to treat my mother as a Ming vase or some other precious work of art.
What I learned was that my mother, though weakened and actively dying, needed the physical expression of love more than ever.
I remember cringing when one of my mother’s caregivers came by to visit and gave Mom a big bear hug. I imagined shattered bones but instead, Mom’s spirits were lifted, and her body wasn’t any more damaged than it already was by disease.
Some people would prefer to die quietly, without a parade of family and friends paying last respects. Others, like my mother, want to soak up affection and enjoy the company of people for as long as possible.
Instead of tiptoeing around and whispering, people like my mother want to remain a part of life as long as they are living. They don’t want people to be afraid to touch them or be in the same room as them, even if they cannot interact.
My mother accepted help from me when she knew she needed it, and was grateful for it, but there was no need for me to build a protective bubble around her. Death was coming, that was certain; instead of sheltering, I should have been augmenting her last days with as much love as I could muster.
Mom believed that “hugs were healing” and would eagerly accept an embrace from anyone who she was fond of, from the grocery store clerk to her only child. Whenever I would visit, the first and last thing I received from my mom was a big hug.
As an introvert, the idea of hugging virtual strangers is a bit off-putting, but watching my mother interact so affectionately within her community proved to me that there are many people out there who welcome a warm and loving exchange. In times that seem to be filled with such hatred towards one another, my mother’s dedication to hugging was almost a novelty. Such a natural act for her made the world a better place.
How silly of me to think that something as innocuous as a hug could ever hurt her.
The science community agrees in part with the feel-good benefits of hugging. According to the National Institutes of Health, preliminary studies showed that hugging and other forms of human affection, such as holding hands, can increase the levels of oxytocin, which can improve mood and reduce anxiety. Subsequent studies have suggested that increased oxytocin levels may also be connected to undesirable traits like envy and deception. Don’t go hugging strangers on the street without their permission for an oxytocin boost; instead, concentrate on the special people in your life. Do you tell them and show them how much you love and appreciate them as often as they deserve?
As your loved ones near the end of their journey in this world, this exchange of love becomes even more important.
Hugs and their healing power are limited of course; all of the hugs in the world couldn’t stop Mom’s cancer from returning. But the dying are not museum pieces. They are flesh and blood with hearts that still feel love, up until their very last beat.
It may sound crazy, but if there was ever a time to employ the cliché, “Stop and smell the roses,” it is when taking care of a loved one who is dying.
Family caregivers can become so preoccupied with monitoring, managing, and documenting their loved one’s declining health that indulging in the simple pleasures of life seems like a luxury that they cannot afford.
But the simplest of actions can have a profound effect on the terminally ill person and the caregiver.
While I know that I provided the best medical care I knew how to my dying mother, and the home hospice staff kindly reminded me of that on each visit, there is one area of care that I neglected.
My mother appreciated the simple joys of life more so than most people, yet I was so caught up in nursing care tasks that I missed multiple opportunities to help my mother transition from this life with a smile on her face.
Safety first, but don’t stifle
My mom remained inside her tiny condo over the course of her last month. One of the last times she left the house was when her personal care attendant drove her to get an ice cream cone. Mom raved about how good it was. I am forever grateful for the kind caregiver who knew how to make Mom happy.
My mom was a fall risk but I treated her like the boy in the bubble during her final weeks. It wasn’t until the last week of her life that she was totally bedridden, but I kept her on a short leash even while she was still mobile. (The hospice-provided walker didn’t arrive until the day before she became bedridden.)
One time, we were in the bathroom and Mom leaned over to smell the body wash that I had just bought. She loved fragrances of all kinds. She swayed a bit on her feet and I swooped in, chastising her for leaning over the bathtub for something so frivolous. I was just being protective, but I should have set her down somewhere safe and brought the bottle to her so she could have a sniff without putting herself in danger. Instead, I just navigated her back to bed.
A room with a view, a breath of fresh air
My mother spent the last week of her life in a darkened, stuffy bedroom. She said that she wanted the blinds left closed, as she was always concerned about privacy. But when my mother was well, she loved watching the birds and feeling the warm rays of sun stream into the house. If I had coaxed her a bit, and opened the blinds just a little, it may have lifted her spirits (and mine as well.)
The last time my mother stepped outside the front door was to check on a bird that had struck the window during the hospice intake interview. I feel bad that I quickly shooed her back inside, instead of offering her a chair and letting her enjoy the beautiful day for a few minutes. (Thankfully, the bird was nowhere to be found.)
There was also a back porch with a table and chairs that I could have helped my mother access with assistance. From there, Mom loved to watch the deer meander through the woods. I was so drained from caregiving duties that going outside seemed like another monumental chore. Now I know the extra bit of effort would have been worth it.
What I did get right: I bought her a bouquet of flowers for Mother’s Day. She loved the flowers so much and touched them each time she passed them. The flowers became the bright spot in her bedroom, a symbol of beauty in the midst of so much ugliness.
Find humor anywhere you can
Here’s another cliché: Laughter is the best medicine.
My mother often remarked that she was born with a chip programmed to make others laugh. She loved to tell corny jokes and funny stories.
I skew towards the more serious side, much to Mom’s dismay. I had heard Mom’s corny jokes a hundred times, but the joy it brought her to see others smile and hear them laugh was priceless. I wish I had laughed more often. It probably would have done me a world of good too!
One of the last times my mother made me laugh was the day she started morphine. In preparation for any vomiting, a common side effect, I had a plastic bucket at her bedside. When I helped her get up to go to the bathroom and asked her how she felt, she placed the empty bucket on her head and did a little dance. Her smile lit up the room.
I had bought my mother a silly talking bird toy that she loved when she was feeling better. I wish I had taken the time to set it up in her bedroom so it could have offered her a fun distraction during those long days spent in bed.
Music to soothe the soul
If you enroll a loved one in home hospice, you will likely hear from staff members the positive influence music can have on those who are actively dying. One’s sense of hearing often remains intact, even when other senses begin to fail.
My mother loved her collection of recordings from music legends like Johnny Cash, Elvis Presley, and John Denver. The hospice nurses encouraged me to play music, but when I asked Mom, she didn’t seem very interested. To be fair, my mother loved to listen to music when she busy doing household chores. She was not the type to just sit around and listen to music.
I was afraid that if the music was playing, I might miss my mom calling to me for help. I could have remedied this by spending more time in her room.
I was playing music for her the morning she died, and true to Mom’s eternally positive spirit, she took her last breath to an upbeat Trini Lopez tune!
Dying is often an unpredictable process, with bursts of energy along with long stretches of sleep. Take advantage of these bursts of life and try to create moments of joy whenever possible.
Joy Johnston is an Atlanta-based digital journalist who began The Memories Project blog in 2012 after her father died of Alzheimer’s. Her essays have appeared in best-selling anthologies, including Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias.
At one point during my mother’s last month on this planet, she was offered an extra pillow to make her more comfortable. She half-joked that the pillow belonged over her face.
If I had known what her final days would be like, I may have obliged.
Dying at home is all the rage. Letting Granny wither away in a hospital or nursing home is so passé.
The die-at-home argument is persuasive. Proponents trot out surveys that show most people would prefer to die at home. Pass away in a familiar environment, surrounded by loving family members, instead of an impersonal, antiseptic and/or urine-reeking institution. Plus, it’s a heck of a lot cheaper.
Sign up with a home hospice agency, and compassionate nurses and staff members will provide your loved one with palliative medical care, medications, and equipment, completely covered by Medicaid and Medicare!
Dying at home may be awesome for the dying. It’s hard to say, since none have bothered to fill out a customer satisfaction survey from the other side. For family caregivers, the home hospice experience is not always as rosy as it is portrayed. It can be a gut-wrenching, soul-draining nightmare that no amount of therapy will ever be able to rectify.
A family’s home hospice experience will vary greatly depending upon two factors: how involved your family is and where the dying person lives. Ideally, multiple family members will help. I’m an only child, and with no relatives nearby, I was designated primary family caregiver. I got to call all the shots but I also had to execute all of them. In a big city, a well-staffed home hospice company may be able to provide more comprehensive, around-the-clock care than in a small town like where my mother lived.
I fully supported home hospice, after what happened to my dad.
In 2011, my father died in a skilled nursing facility almost 200 miles from home. He collapsed in the shower, in the arms of strangers, his emaciated frame and his Alzheimer’s-decimated brain finally releasing him from the zombie state he had lingered in for a year. Because the staff couldn’t locate the DNR order, 911 was called and an EMT performed CPR until my father’s ribs broke.
That was a horrific way to die. Dad had always feared death, and we certainly didn’t do him any favors with that chaotic ending. I’ve carried the guilt that my dad died alone with strangers in a city far from home, right up until this moment.
I just watched my mother die at home.
And I doubt that it made any difference that she struggled through an agonizing death in her own lumpy bed on her faded, 25-year-old bedsheets versus a sterile hospital bed.
Over her last few days, her head was thrown back, and her glassy eyes stared at the stucco ceiling the entire time. Would it have mattered if the stucco had been replaced with institutional ceiling tiles? Probably not.
Did it matter that I changed her diapers versus a woefully-underpaid stranger?
Mom said she never thought I would be wiping her private parts or giving her sponge baths or inserting suppositories or any of the intimate tasks that family caregivers may find themselves providing, even with home hospice care.
As Mom further deteriorated, becoming totally bedridden, she asked me an unanswerable question: “What has happened to me?”
The last week of my mother’s life was a mixture of pain and confusion amid a morphine-induced stupor. I began to view her less as my mother and more as a patient.
There was not much the home hospice nurses could do, other than make sure I was giving her enough pain medication and help me move her to keep her comfortable.
The daily nurse visits were comprised of checking vital signs and completing a Medicare-required survey. The social worker arranged volunteers to provide me brief respite breaks. The chaplain was away when Mom died, so we never met her.
I was alone with my mother when she drew her final ragged breath in this world.
Would my mother have been better off in an inpatient hospice or nursing home? (There are no inpatient hospice facilities nearby; the closest care facility is a half-hour away.) She surprisingly thrived in the skilled nursing facility she was placed in after cancer surgery three years ago. She loved the social interaction and learned how to walk again, thanks to a stellar rehabilitation program.
Of course, there was no hope of recovery this time. My mother simply needed a waiting room until her failing body allowed her spirit to depart.
I don’t regret that my mother died at home with hospice care. I don’t regret being her faithful, albeit fumbling caregiver.
I regret that I was so preoccupied with caregiver duties, like administering medications, changing diapers, and treating bedsores that I lost sight of the simple joys that my mom could have experienced over the waning days of her life. One more time outside, to feel the sun on her face and watch the big, black crows soar through the air. A spoon of butter pecan ice cream, her favorite treat. A sip of black coffee, her favorite beverage. An extra hug, another kiss on the cheek, holding her hand a little longer.
It may take a village to raise a child, but you may discover a ghost town when it comes to the dying.
Joy’s essays have appeared in best-selling anthologies, including Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias.