When I became a caregiver for my father in 2003, I was only 33 years old.
I was the only caregiver I knew. My father had been diagnosed with Alzheimer’s, so I looked up my local chapter of the Alzheimer’s Association to see if they had a support group I could attend. I think I went one time but didn’t find much benefit in it, largely everyone was older than I was and couldn’t share quite the same experience that I was having.
A few years ago, my father was diagnosed more accurately with Lewy Body Dementia, which made more sense considering his symptoms and disease progression. While doing research on the disease, I found the Lewy Body Dementia Association, which is currently the largest organization focusing on LBD. It is devoted to providing information and support to the sufferers of LBD and their caregivers.
Inspired by the idea of helping other caregivers, I became one of the LBDA’s call counselors, speaking to caregivers across the country who had questions or concerns or who just needed a shoulder to cry on.
I also decided to start a support group for LBD caregivers in Seattle, and another in Everett, about forty minutes north of the city. I wanted to share my experiences, the tools and tricks I had learned during ten years of caregiving, and I wanted to foster fellowship among the people who need it the most – who are often isolated, stressed, and experiencing tough struggles.
It has been an amazing experience and I’ve learned a lot about what other caregivers deal with and about the strength and compassion that exists within most caregivers. My groups are mostly made up of wives of husbands with dementia, but there are a few adult children, as well.
With honesty and grace, my members share their stories and experiences, laying their struggles out in front of others.
I have been amazed at the similarities in people’s stories and needs. One thing that I have seen with my members is how important it is for them to be with other LBD caregivers. LBD is a unique form of dementia that can cause more behavioral issues than Alzheimer’s, as well as hallucinations, delusions, and aggression. I have watched how hearing similar stories from other LBD caregivers has helped my members release some of their grief, fear, stress, and confusion.
We also have some members whose loved ones have passed on, and I think it helps members to see that there is a light at the end of the tunnel – that there is an end to this long journey. Hearing their experiences as people who have already gone through the whole process is so helpful as well as aids current caregivers in avoiding the pitfalls and poor decisions that former caregivers made.
I am still the youngest caregiver I know but it comforts me to hear the stories of other caregivers who share my experiences, even though they are older. I think being in a support group is essential for caregivers and have witnessed the relief and ease of new group members at being around people who understand. I encourage all caregivers to find a group near them, or if there isn’t one, start one! You will be amazed at the friendship, fellowship, and comfort to be found.
As someone suffering with chronic pain for nearly 8 years, I can tell you it’s never an easy day. Every day and sometimes every hour can be different, I have no control over my body and how it feels from one moment to the next. Most of the time my mind wants to do things, but my body doesn’t allow it. I know that many caregivers and loved ones have asked or thought how can I push/encourage my loved one with chronic pain in a “good” way? I don’t want to push too hard, but I also don’t want my loved one to miss out.
Let me be the first to say we really do not like the fact we can not make plans anymore. We really do want to be an active participant in our friends and families lives. We do have the best intentions when we say we will be there and when we can not it really does bother us.
I decided to ask the chronic pain community how a caregiver or loved one can encourage someone with chronic pain. Here are our top answers:
“Help out around the house or with dinner so the person isn’t too exhausted to do other things. If it’s an event type thing the person wants to go to, make the person feel like they can be honest about how they are feeling. Let them know they will not let you down if they have to leave early.”
“I’ve been blessed with some amazing people in my life that help. Support is the key. I always think of the spoon theory. I only have a certain amount of spoons, and if I want to get out to do something fun, I need the energy, which is very sparse during a high pain day. I get the most help with people offering to take my kids for the night, bringing meals over, helping with housework. I have a hard time asking for help, but this is what I’d ask for. “
“My husband and young adult kids would buy me little things to encourage me. For example, Superwoman PJ’s, because I was doing therapy at home as well as at a place, and they saw how difficult the smallest task was. They didn’t treat me as disabled, but they were always there to make my life easier in trying to regain movement.”
“Pay attention first. Be a steady shoulder second. Understand that everyone is different and it’s about the individual’s ability to push past the pain. If you can do that then you will know how to push/encourage them in a positive way. After all, it may appear we need a push or encouragement, but really what we need is support. Be supportive and that will eventually give us the encouragement you are looking to give.”
“Read as much as you can about what they are coping with. Knowledge is the answer.”
“Communication is very important. A phone call or simple text asking how you are doing is everything. Keep communicating and supporting even if the person in pain keeps declining your offers to get out of the house to do something. Support is key.”
“For an event: Listen to why they are hesitant about attending, is it an issue that could be problem solved or is it an emotional issue/fear of showing their pain to judgmental eyes? Do they know they can count on you if they become overwhelmed/exhausted or if they are faced by a person offering up free advice without understanding what it took for them to even leave the house? Are you willing to be their companion and their guard dog? Do they know this, deep in their heart do they trust this about you? This is how you push/encourage them in a good way. You let them know that you’ve got their back.”
In closing, the best way to encourage us and push us in a good way is to be supportive and keep communication open. Come up with a plan, but keep things flexible. Please remember we are already hard on ourselves and we truly do not like missing out, making us feel guilty about it is never the answer.
About the Elizabeth pain
Elizabeth Pain has suffered with Complex Regional Pain Syndrome for nearly 8 years along with other pain conditions. She has been married to her best friend for 14 years and a mother of 3 amazing children. She became active within the chronic pain community nearly 7 years ago when she started an online support group for those suffering with CRPS and their family members. She finds comfort in helping others and has found writing helps distract her from her pain. Nearly 2 years ago she branched out and started a website for all chronic pain conditions calledThe Unbroken Smile.
The long arm of the pharmaceutical industry continues to pervade practically every area of medicine, reaching those who write guidelines that shape doctors’ practices, patient advocacy organizations, letter writers to the Centers for Disease Control and Prevention, and even oncologists on Twitter, according to a series of papers on money and influence published today in JAMA Internal Medicine.
The findings of the papers provide further evidence showing how conflicts of interest help shape health care, a subject ProPublica has explored through its Dollars for Docs series since 2010. (Check whether your physician receives money from drug or device companies through our news tool.)
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“The very way we all think about disease — and the best ways to research, define, prevent, and treat it — is being subtly distorted because so many of the ostensibly independent players, including patient advocacy groups, are largely singing tunes acceptable to companies seeking to maximize markets for drugs and devices,” researchers Ray Moynihan and Lisa Bero wrote in an accompanying commentary.
The papers published in the journal cover a variety of issues:
More than two-thirds of patient advocacy organizations that responded to a survey indicated that they had received industry funding in their last fiscal year. For most, the money represented a small share of their budget. But 12 percent said they received more than half of their money from industry.
Most organizations reported having a conflict-of-interest policy, but a much smaller percent said that their groups had policies for public disclosure of those relationships. Fewer than 8 percent of respondents said their group “perceived pressure to conform its positions to the interests of corporate donors or partners” and nearly 14 percent said their group had declined a contribution because of concerns about conflicts of interest.
“Although the amounts and proportions of financial support from industry are modest, the pervasive nature of industry support suggests the need for robust public debate about how to ensure that [these groups] serve the interests of their constituencies,” the authors affiliated with the Cleveland Clinic and other academic medical centers wrote. It called for greater transparency of funding sources by the groups.
Organizations that received funding from opioid manufacturers were less supportive of guidelines proposed by the CDC to limit prescribing of the drugs for chronic pain. More than 150 organizations formally submitted comments after the proposed guidelines were released in February 2016, and 80 percent of them were supportive, though some had recommendations for changes.
Among the 45 groups that received money from opioid makers, though, the level of support was only 62 percent. And none of those groups disclosed their funding sources in their comments. (The CDC did not ask or require them to do so.)
“More people are dying than ever before from these products and it’s important to know how the market is shaped by the spending of drug companies,” G. Caleb Alexander, co-director of the Center for Drug Safety and Effectiveness at Johns Hopkins University, said in an interview.
Two committees that developed guidelines for the management of high cholesterol and hepatitis C did not fully comply with standards set by the Institute of Medicine in 2011 to limit the number of industry-funded panelists. The Institute of Medicine required that fewer than half of guideline writers have commercial ties and that all chairs and co-chairs have no conflicts. But in both cases, at least one chairperson received money from industry and, in the case of the hepatitis C guidelines, a substantial majority of panelists also received money.
Moreover, the authors noted, when separate committees with no commercial conflicts developed guidelines for cholesterol and hepatitis C, the recommendations were more conservative and called for less expensive first line treatments.
Nearly 80 percent of U.S. hematologist-oncologists who use Twitter have financial conflicts of interest. The authors said their results raise questions about how conflicts should be disclosed and managed on social media. It recommended that, at minimum, physicians active on Twitter should disclose their industry funding in their biographies.
A preliminary analysis of tweets by these doctors, not yet published, has shown that “a sizable percentage are tweeting about drugs that they have specific ties to,” oncologist Vinay Prasad, one of the authors of the study and an assistant professor of medicine at Oregon Health & Science University, said in an interview. “Not a single one has disclosed so far, but we’ll find out.”
The pharmaceutical industry trade group, in a statement, defended the relationships between companies and other organizations.
“Industry engages with stakeholders across the health-care system to hear their perspectives and priorities,” said the statement by Pharmaceutical Research and Manufacturers of America. “We work with many organizations with which we have disagreements on public policy issues, including on prescription medicine costs, but believe engagement and dialogue are critical.
“While we cannot speak for particular organizations, we have heard from many patients who are concerned about the growing out-of-pocket cost burden when trying to access needed health-care services and treatments. In addition, there is broad recognition by the patient community of the significant unmet medical need that exists for many fighting devastating and debilitating diseases.”
Moynihan and Bero, the authors of the JAMA Internal Medicine commentary, wrote that their primary concern is that patient groups actually speak for patients. Recently, when Mylan came under widespread criticism for the price of its EpiPen, patient groups were largely silent.
“To ensure a healthier patient voice in medical research, education, policy and practice, sponsored groups that want to be seen as independent and credible need to decrease their industry sponsorship and ultimately disentangle, gaining in authority what they lose in resources,” they wrote.
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I’ve been watching our Facebook page get taken over by a bunch of school yard bullies over the past few months. It’s a pretty confusing thing to see for a support group.
Living in Florida, I’ve gotten an up close and personal view of Trump lighting people up. It’s great to see everyone so excited about the future of the US.
It’s less exciting to see my otherwise lovely neighbors start talking about Liberals like they’re less than human.
Given that Liberals and Conservatives share the same DNA, I imagine they’re doing the same thing over in their own Facebook bubble, although I don’t see much of that.
One of the great things about doctors offices is they don’t ask about your political affiliation before they treat you. They just treat you, because any good doctor doesn’t care what bumper sticker you have on your car.
Caregivers aren’t bond by the Hippocratic Oath, but joining The Caregiver Space suggests you’re here to talk to other caregivers and support each other.
That’s suddenly hard for people, because everything caregiving related has become a button unleashing a political firestorm.
I know these are all words that are just asking for trouble: Obamacare, repeal and replace, Meals on Wheels, Medicare, subsidies, tax credits, health insurance, provider network, work requirements…the list goes on. These words turn people into internet trolls and bullies.
The problem is, how do we talk about our lives as caregivers without mentioning them? I don’t think we can.
But there’s a solution.
We’re all old enough to remember a time when complaining about copays was just that — complaining about copays. Not a commentary on the President of the United States or a declaration of our political feelings. It was a commentary on our personal experience. I would complain about copays and someone else would say agree that they really add up and it stresses them out, too.
We can still do that.
If someone says they’re worried about changes to their health insurance, I can respond to another caregiver saying they’re worried.
If someone is stressed out about how they’re going to pay their kid’s medical bills, I hear that they’re stressed out.
If someone is upset because they tried to sign up for a social program and they got placed on a waiting list, I can relate to feeling frustrated.
If someone writes a post about how they wish the rules for FDA approval would change and I completely disagree, I can say that I disagree without going on a personal attack.
Some people have a great experience with the VA, some people don’t. That doesn’t mean anyone is wrong, it means they had different experiences.
We all know this already. We’re polite to people we disagree with all the time. I disagree with my husband about things. My parents and I seem to have opposite opinions about pretty much everything. And we still love each other. I still support them through all sorts of things and they support me.
We all have enough stress in our lives. We come here to share our ups and our downs and know other people understand what we’re going through. I come to The Caregiver Space for support, but lately it’s been stressing me out.
Let’s leave the political arguments for another Facebook page and get back to supporting each other.
Why did we decide to become a family caregiver? Because we put our loved ones first and want the best for them. We want them to be happy and as healthy as possible. Part of our duty as caregivers requires the administering of medication. Adhering to a medication plan can be a challenging task for any individual, let alone caregivers, who hold a far greater responsibility.
According to a study by the World Health Organization 50% of all prescribed medications are either taken incorrectly or not at all. This can be fatal: In the US alone approximately 125,000 people die annually as a result of not following the doctor’s prescription.
This is a very frightening statistic.
Fortunately there is now a simple way to manage treatments and keep an overview of one’s progress: The MyTherapy app.
You might think: “Well, fine – another pill reminder.” but MyTherapy is much more than that. It unifies a person’s whole treatment in one application. The free app transforms a therapy into a to-do list which motivates people to complete it and fulfill their responsibilities. The app allows you to set reminders for medications, record measurements like blood pressure and even enter activities. Your smartphone will help you stay organized and on top of your responsibilities. But that’s not all.
MyTherapy also offers an integrated diary which is able to document all vitals. This is as useful for you and your loved ones as it is for the practitioners. With this tool your doctor will be able to easily identify health patterns and you will have a readily available overview of your progression. Before the next appointment, you can print out a personal health report to discuss. The well-structured report enables doctors to quickly identify and optimize a therapy plan for their patient.
There are two different ways that the use of MyTherapy can support you and your beloved one:
Only you as a caregiver use MyTherapy:
If you decide to become a “digital caregiver” with the support of MyTherapy you will benefit as the app simplifies your daily routine. The app enables you to easily make sure that your loved ones remember all their responsibilities. It will be easier to make sure they stick to the individual therapy plan, take their meds, work out and remember their measurements. This will eliminate the stress of having to remember everything – the use of MyTherapy gives you peace of mind and enables you to spend more quality time with the person you care for.
Your beloved one uses MyTherapy and you connect to him or her via the team function:
Of course it is also possible that your loved one may wish to feel less dependent and might like to take control of his or her therapy. The app will then simplify the daily routine and ensure a lot of self-responsibility. You as caregivers have the opportunity to connect via the team function and be his or her personal safety net. You will be able to see the status of medication as well as the therapy progression and their vitals. Most importantly, you are able to see if all medication is taken properly and in case your loved one forgets to do something, you can be the additional reminder.
The outstanding ease of usability for patients of all age groups has been proven many times. Also, MyTherapy’s impact on medication adherence has been demonstrated by several studies with reputable research institutes including Germany’s largest university hospital Charité Berlin. Recently MyTherapy was awarded with the Kindness for Kids Award for “MyTherapy DermaKids”, a collaborative-project with the University hospital of Munich (LMU). MyTherapy was started in Germany and strictly protects data privacy: you can use the app without subscribing and your personal data will not be shared with third parties. The MyTherapy app is free of charge and can be downloaded in the Google Play Store and in the App Store.
MyTherapy is the app for caregivers and the people they care for. Of course it can never replace the physical care and our unconditional love. But it can help to simplify daily routines and formulate an insightful overview for personal and professional use. Have a try and see how it can support you.
Thank you for your very accurate picture of the longterm caregiver and also for the term “reciprocal altruism,” which I have never heard used in my years of reading these articles and leaving lengthy comments.
Formal vs. informal support
I was solo caregiver for my mother, who had dementia, for 9 years of home care, then 3.6 years of insanity of caring for her in the nursing home as well. Pretty much every night for 5-6 hours per night. I drove 70,000 miles to visit her. But this is not about the story of her, it is about one of the real reasons that family caregivers do not get paid. The term formal support and informal support.
It is not just a phrase like Patient Centered Care…OH! that has real meaning also! These two support terms define how caregiving or other social services are studied in academia and those terms ride along the legislative path — unchallenged — studies justifying funding and budgets in congress and elsewhere.
Caregivers and well meaning neighbors and church do-gooders are defined as informal support which means does not get paid!! Doctors, nurses, CNAs, LVNs, hospice centers, senior daycare programs, nursing homes, social workers, physical therapists, and so forth. Licensed medical professionals usually. They are formal support and of course are paid. Usually via Medicare/Medicaid or some social welfare program.
So who gets the money? You could be working your benzaga off 20 hours a day by some miracle, a respite care relief person comes in 2 days a week for 4 hours. So your big bonanza is respite, for two four hour stretches which allows you to go shopping for the week, mow the lawn and take a long shower…wheee!
But even being “given” this is a chore. Usually you or the person you care for pays for it. So, someone gets paid and then gets to have a “life,” but it isn’t you. Why can you not be paid? You are not a licensed professional and the 20 year old home aide is licensed (formal support) so they get paid.
Family caregiving is considered a gift
…and protecting against financial abuse.
And there is this thing about relatives getting paid to care for their relative. Part of the resistance has to do with taking advantage of the finances/home of a dependent relative; and too many times, the relative feels entitled to help themselves to the credit card, the checking account, the car, food, freeloading in parent’s house and not really caregiving. Neglecting the elder, abuse.
Another term to consider: Filial Responsibility. In China, this is a cultural foundation which it is expected that children care for their parents in old age. That is why big families were desired, when they were allowed.
This responsibility is held by the eldest daughter…no, the #1 son! However, as usually played out, it has benefits for the son’s family, who moves into the parents’ home, they help with babysitting and perhaps caring for the great grandparents at that time…and then eventually the #1 son’s wife gets the burden of actual caregiving dirty work, while grannie (who got stuck as caregiver for his mother) gets to take her bitterness out on this poor woman…making for great plots in Chinese movies and novels. With any luck it all equals out, with eldest son inheriting the family property. His siblings meanwhile are freer to create their own lives elsewhere.
This Chinese filial responsibility is playing out here in Silicon Valley…and I see it in the old grandparents, often in the Mao pajamas outfits…pushing baby stroller down the street, the wife walking dutifully behind. I read a research paper also that found that these immigrant families send enough money back to China to hire care for their parents back home if they are not able to bring them here.
So guess what is a law in some states? Filial responsibility! Usually meaning ways to stop grown children from cleaning out the parents’ estate to enrich themselves…while technically putting the parent into the low income range to qualify for Medicaid.
The government depends on free caregivers to save money
This is another reason government will not support direct payments for family caregivers: it depends on our free donated services to keep elders out of the ER, the hospital, rehab and nursing homes. It IS part of the plan to save taxpayer money…I have read this directly about legislation proposed and health care savings.
Funds to “support the family caregiver” go to those who create training programs, webinars, support phone lines, support group leaders, brochures. etc. To train you to do it longer time, more hours, and at greater medical depth. I have read figures like the value of family caregivers hours is $400 billion per year. For which you get a well deserved pat on the back! Whoopie
Families are scattered
…and Social Security will take care of them, right?
Family caregiving has long stopped being a multigenerational endeavor, where 3-4 generations lived in big farmhouse or near each other. Often, the grown child nearest the elder gets stuck with it…or the unmarried woman (me)…the other grown siblings often run for the hills and throw rocks, or do some sort of task long distance. But so many are stuck with the entire caregiving burden and then attacked as well. As I was and still am even 1.5 years after mom’s death.
Clinton has a clue
Of course the candidate who knows her stuff on this is Clinton, and her current proposals are in line with current rules of the formal vs. informal structure. She has created helpful bits that do not include direct funding, like allowing caregiving quarters to count toward your social security earning quarters…or allowing expenses to be deducted from your income tax (big deal, if you had to give up work)…or somehow getting some respite care hours. She has put her foot in the door here…and I could see the logic of what she proposed so far. None of it violates the “not paid” classification.
Third classification needed?
We need a third classification like primary support, which could be paid a stipend along the lines of an SSDI payment. Why should taxpayers pay for family caregivers? Because chances are that the typical taxpayer is a deadbeat and not helping with his own family. Deadbeat Nation I like to call it.
Canadians are calling for governments to provide financial support for caregivers who have to reduce their work hours or leave the workforce, according to a survey of more than 4,000 Canadians, the results of which are published in a new Conference Board of Canada report, Feeling At Home: A Survey of Canadians on Senior Care.
“Canadians who provide unpaid care to family are under pressure to balance employment with their caregiving responsibilities,” said Louis Thériault, Vice-President, Public Policy. “The results from this survey show that Canadians say that governments should provide financial compensation for those who have to reduce their work hours. Providing caregivers with the support they need should be part of strategies to care for Canada’s growing senior population.”
Sixty per cent of Canadians surveyed said that governments should provide financial assistance to those who have to reduce work hours or leave the workforce to care for seniors.
No province or territory in Canada has mastered provision of senior care—all have strengths and weaknesses, and all can learn from each other.
“Unaffordable costs” is the number-one reason respondents with unmet needs gave for not receiving home and community care service.
When surveyed, 60 per cent of respondents agreed that governments should provide financial assistance to those who have to reduce work or leave the workforce altogether. In contrast, 28 per cent of respondents supported an obligatory private insurance plan; and 25 per cent said care should be provided by close relatives of the dependent person.
In addition to the results about supporting caregivers, other key findings from the report include:
No single province or territory in Canada has mastered senior care—all have strengths and weaknesses, and all can learn from each other.
Home and community care services are affordable for those who obtain them, but costs are a barrier to access. “Unaffordable costs” is the number-one reason respondents with unmet needs gave for not receiving service.
Transportation is the home and community care service most likely to require Canadians to incur out-of-pocket expenses, but transportation is also seen as one of the most affordable services.
EKOS Research Associates conducted the survey of 4,127 Canadians in 2014. The margin of error for a sample of 4,127 Canadians is +/−1.5 per cent, 19 times out of 20. The margin of error increases for the population subgroups. Respondents were frequently responding on behalf of individuals who were recipients of care. Respondents 55 years of age and over were oversampled to reach those who were more likely to have interaction with home, community, and long-term care services. Therefore, the sample contains a greater share of older, wealthier, and more-highly educated respondents than in the general population.
Growing up in the early 2000s, I thought my older brother and I were the only millennials with a family caregiving role. When I was eleven years old, my older brother dropped out of his sophomore year in college to take care of my mother. She had undergone a spinal surgery that went horribly wrong, leaving her in debilitating chronic pain. As a young millennial, my brother became responsible for my mother’s medical care and our household finances. With a seven year age difference between us, my brother’s caregiving role also included looking after me, making sure that I made it to school each day, dressed and fed. My brother acted as the primary caregiver in our home, sacrificing his own dreams that I might be able to pursue mine. As my mother never fully recovered from her surgery, his caregiving role continues to this day.
In the nearly two decades of our caregiving journey, I had never heard of the term “millennial caregiver”. Moreover, I didn’t even see myself as a caregiver until I came across the work of my now-PhD supervisor Dr. Saul Becker in England. His work with children and young adults who provide unpaid care in their families has spanned decades and has shaped the creation of legislative policy and supportive programs in the United Kingdom. Called “young carers” in the UK, I finally discovered there were other young people with family experiences similar to mine. My brother and I weren’t alone.
Who are “Millennial Caregivers”?
The latest figures released from the National Alliance of Caregiving and the AARP Public Policy Institute show that millennials (ages 18-34) make up nearly a quarter of the approximately 44 million caregivers in the United States. There is an equal chance that a millennial caregiver identifies as male or female. According to the NAC and AARP report, the “typical” millennial caregiver is 27 years old and provides support for a parent or grandparent with a physical condition requiring care. Millennials may also provide care for spouses, siblings, close family friends, and their own children. The care recipient may have care needs related to a mental illness, substance abuse issue, developmental or learning disability, HIV/AIDS diagnosis, or an age-related disease such as dementia or Alzheimer’s. In addition, millennials are increasingly providing care for their loved ones with injuries sustained in military service (e.g., traumatic brain injuries).
Caregiving can look very different across families. The types of tasks caregivers may perform include physical care such as lifting a person into bed, personal care (showering, dressing), and administering medicines. They may also be responsible for grocery shopping, household bill payment, cleaning, and cooking. Millennial caregivers who also look after their siblings can be found helping with homework or driving them to and from school. For some families, the millennial caregiver provides emotional support, serving as the voice of reason or the shoulder to cry on during times of stress.
Are Millennials Less Inclined to Identify as Caregivers?
In the interviews that I’ve conducted around the country, millennials are sometimes hesitant to label themselves as caregivers. They may not feel that the help they provide to their families “counts as caregiving” because the time devoted to care-related duties amounts to a “few hours a week”, or because another family member also provides care in the home. Those who live away from their family are even more reluctant to identify as caregivers, saying that returning to the family home on the weekends or on holiday breaks, i.e., “caring at a distance”, somehow reduces their role as a caregiver. In addition, the types of care millennials provide also plays a significant factor into how they view themselves: those who provide emotional support or help care for siblings may feel disqualified from the title of caregiver.
The issue of self- identification for millennial caregivers has reverberating consequences, namely, how they are perceived by society at large. When millennials disqualify themselves from the title of caregiver, the way we view their important role in the family is at risk for demotion. On a macro-level, millennial caregivers are essential participants in our nation’s health care system. They help contribute to the estimated $470 billion worth of unpaid care provided by family caregivers, helping to relieve the burden on our health care system. It is essential that millennial caregivers recognize their significant value in their individual families but also society at large.
Why Do Millennial Caregivers Need Attention in Public Policy?
The current discourse around caregiving is often centered around the aging Baby Boomer population and their caregiving needs. A “typical” caregiver in the minds of many people is someone in their 40s or 50s looking after an aging parent. The widely accepted view of caregiving is narrowly focused, leading people to think that care is only provided for elderly family members or those with certain physical health conditions. Furthermore, a common misconception is that caregiving tasks only consist of mobility aid, such as lifting a person or helping a person walk. The costs of such a narrow characterization of caregiving are high. Millennial caregivers remain overlooked in public policy, particularly with regards to respite care funding. National advocacy organizations and community support groups tend to focus on the needs of older caregivers, neglecting to address the realities facing caregivers in college or those without a stable career. Similar to older caregivers, millennial caregivers are at risk for social isolation, particularly when the demands of caregiving are high and time-consuming. Without supportive programs that directly attend to their distinctive needs, millennial caregivers can feel lonely, isolated, and forgotten.
How Can We Help Millennial Caregivers?
Ease the financial burden
Increased funding on a national and state level for millennial caregiver specific services, e.g., respite care and support groups
Grants and scholarships for millennial caregivers for college
Monthly stipend given directly to millennial caregivers
Where is this already happening? The UK provides a weekly allowance of £62.10 (about $90) to caregivers providing care for 35 hours a week or more. It’s not a huge amount but can help take some of the financial strain off these caregivers.
Educational training for social workers, counselors, teachers, and medical personnel on identifying millennial caregivers and supporting their needs
National caregiving advocacy groups must increase their recognition of millennial caregivers and include millennial caregivers in their political lobbying.
We need a more inclusive conversation about caregiving. Caregivers of all ages are vital members of society and deserve our recognition and support. Millennial caregivers do exist and are not rare. We must champion their cause and direct our attention to addressing their needs in policy, services, and funding. The way we view caregiving must also broaden in scope, ensuring that those who “care at a distance” or provide care in conjunction with other family members feel valued. Every act of caregiving is important. By expanding our conversation about caregiving, we lift up the millennial caregiver to a place of appreciation.
Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series of videos from Alz Live provides a roadmap. This is part five of an eight part series.
Once you hit what many call “the enduring stage,” you will have to help more with Activities of Daily Living, or ADLs, your loved one will experience more behavior and health issues, and you are going to need breaks and extra support.
Here’s how the system works; and how to make it work better, for you.
‘It Just Drains You of Energy’
“The later stages are very difficult,” says Debby Blyth, of Toronto, who was the main support for both her parents as her mother struggled with dementia. “I was screaming a lot inside my head.”
Among the things you can expect are visual problems and falls on the part of the Alzheimer’s sufferer, angry outbursts particularly at sundown, night wandering, appetite decline, urinary tract infections from neglecting to drink or forgetting how to swallow, incontinence and other distressing “responsive behaviors.”
Blyth remembers one horrendous evening when her mother fell while sitting on the toilet. Blyth, who had worked all day, had just left her parents’ house when her dad called. She immediately headed back and found her mother lying in the bathtub, smeared with blood and body fluids. “She was a mess,” she says. “It just drains you of energy.”
Unlike other diseases, Alzheimer’s can go on for years – and that’s not sustainable for the caregiver.
“It’s a marathon, not a sprint,” says Barbara Larkin, a Burnaby, B.C., social worker, who was a joint caregiver for her elderly mother until she died in February. As dementia progresses, she says, you’ll need the right supports in place.
Kim Angelakis, director of health and wellness for We Care Health Services, a national health care agency based in Toronto, says caregivers can lose themselves in the process.
One Statistics Canada study found 55 percent of informal caregivers felt worried or anxious, 28 percent felt somewhat stressed by the demands placed on them, and 19 percent said caregiving was affecting their physical and emotional health.
The home care vise
The first call Blyth made was to her local Community Care Access Centre (CCAC). Every province in Canada has some kind of CCAC service. These provincially run and funded organizations assess the kind of care needed to keep ill or mentally and physically disabled people living in their homes.
They can provide support to help with day-to-day activities, nursing care, occupational and physiotherapy, social workers for emotional support and a range of other services, as well as offering advice on community support services (such as Meals on Wheels and dining programs).
You usually don’t require need a doctor’s referral. Instead, a case worker visits your home to assess your needs. In Blyth’s case, the CCAC care coordinator pointed out tripping hazards and suggested putting railings in the bathroom to keep her parents safe. They also provided a few hours of homecare a week to help with bathing.Occupation therapists: How these star performers keep those living with Alzheimer’s safer, and better functioning, at home. Read Home, Safe Home
Provincial governments usually use private providers of homecare services to deliver care.
Blyth, like many caregivers, got less help than she needed. In fact, the Canadian Homecare Association notes that demand for homecare services is outpacing funding right across the country. The number of people getting homecare grew by 55 percent between 2008 and 2011 to about 1.4 million people. And yet 2010 statistics from the Canadian Institute for Health Information show that, of the $3,957 per capita spent on public healthcare, $159 (or 4 percent) is spent on homecare.
Practically, what that means is that there may be a waiting list, for service, and the government will cap the number of hours of care, says Angelakis. Case workers offer support based on needs and, in some provinces, your own ability to pay for care. “Across Canada there’s a lot of variability in the models as far as the total hour allocation,” says Angelakis.
“The problem with services like the CCAC is that they tend to be very medical model-oriented,” says Mary Schulz, director of education for the Alzheimer Society of Canada (ASC). “They’re set up to address primarily a physical problem – maybe a person is having trouble bathing or walking or making meals or doing their dressings.”
Often someone in the middle stages of AD or another form of dementia doesn’t have a lot of problems with those things, says Shulz. “The system is not all that supportive of cognitive problems as opposed to physical problems.”
A snapshot of government-provided care
How many paid hours of care you can expect from the government differs dramatically depending on where you live and even who assesses your needs. Here’s an idea of what to expect:
In Alberta, “clients with a dementia are typically considered ‘long term supportive’ clients,” says Cheryl Knight, executive director of community and seniors’ health at Alberta Health Services.
“These clients can get a maximum of 10 hours per week of direct professional service, 35 hours per week of personal support service and 26 hours per week of respite services.” If your needs exceed that ceiling, “there’s an opportunity to have the services considered for extraordinary funding.”
In Ontario, says Audrey Miller, owner of geriatric care manager Elder Caring Inc. “the maximum I’ve seen is 56 hours and that was for palliative care.” If you need help bathing, you might get one to two hours a week, enabling you to bathe twice, she says.
In British Columbia, by contrast, you could get a maximum of 28 hours of care a week, according to Peter Silin, owner of Diamond Geriatrics in Vancouver. But that would be rare, he says. “Generally, the maximum you’ll get is two hours a day.”
A social worker by training, Silin is one of the new breed of geriatric care managers, like Audrey Miller, who offer services geared to the overworked caregiver. He has accompanied elderly people to doctor’s appointments, intervened with the local health authority to get them more in-home care and watched over them in hospitals and nursing homes.
He start withs a care management assessment to identify issues, such as night wandering. Then he works inside and outside the public health care system to put supports in place that enable people to stay in their homes as long as possible. As Silin told one busy real estate agent recently: “I’ll be the caregiver so you can be the son.”
It is possible to negotiate for more hours of government-paid care, says Silin. He suggests documenting all the things you do as a caregiver on a day-to-day basis, from bathing to feeding and notifying the CCAC when the person you’re caring for loses abilities and has new symptoms.
It helps to know how to phrase your request for more care, adds Miller. She suggests saying something like “my parent is at risk of a fall – I think she needs help with bathing.” The government is well aware that it is far more expensive to provide hospital care for a broken hip, than to provide care at home, she says. “Be assertive. Ask what else you can get – what else is available? The squeaky wheel gets the grease.”
Blyth suggests making sure you’re part of the process. “It’s really important to be there when the case worker is doing an assessment,” she says. “I think if family members are involved, they feel as if they’re a little more under the microscope and they’re more willing to deal.”
Case workers are also a good source of info about other services you may be eligible for, she points out. “Because my dad was a veteran, we had a little more help. We could have someone come in to clean the house, cut the grass, clean the eavestroughs and remove the snow.”
Other people may have access to resources through workplace benefits or pension plans, a private insurer, or Aboriginal Affairs, says Angelakis.
Finally, don’t be shy about asking for help from family, friends, church groups and others. Angelakis suggests making a list of the things you are currently doing and how much time is required to meet that need on a sign-up sheet.
Supplement with private caregivers
Ultimately, you may have to supplement government-provided care with private care. Private home care can set you back $20 to $30 an hour or so for basic personal support with meals, housework and bathing, for example, and $40 to $70 per hour for nursing care. Often there’s a two-hour minimum.
To keep costs down, Angelakis suggests piggybacking two tasks – for instance, if your dad needs help cleaning the house, arrange to have a personal support worker (PSW) arrive in time to remind him to take his medication.
And, she says, “make sure you’re getting the right level of care from the right provider.” Care from a registered nurse is expensive and unnecessary for routine tasks like dressing changes or giving medications that can be carried out by a (cheaper) registered practical nurse. And even an RPN’s expertise isn’t required for doing light housework.
At We Care, and most other providers of home care, says Angelakis, a case worker will work with you to put a “care plan” in place that effectively allocates public and private sources of care. While there’s no national organization that lists home care providers, you can check Home Care Ontario for connections to homecare providers in Ontario and Alberta. (For other provinces search the name of your community or province along with “home care.”)
Written by Camilla Cornell. Camilla is a Toronto freelance writer who specializes in health care and personal finance. In her 25-plus years of writing she has been the recipient of two National Magazine Awards and numerous nominations. Originally published on Alzlive.com.
It can be hard to have empathy for other people when you feel so drained, but it really breaks my heart to see caregivers tearing each other down.
On an article about raising funds for medical care: “I also agree having to beg for money is pathetic.”
On finding the bright side to a traumatic loss: “There is no bright side when you are in end of life caregiving.”
On an article by a caregiver with support from family and friends: “you are not a caregiver. I can tell by this bull()$article. It takes more than a fancy degree to know about being a caregiver. Your article is not only offensive. It is downright demoralizing, demeaning, disheartening and unrealistic. You have no idea do you?”
Why would you come to a support group to be mean to other people? I’m sorry if someone else’s personal experience doesn’t apply to your life. Just close the tab, click to the next article, move on. Why are people with such limited free time using that time to try to hurt someone else?
If you want to read the science behind why people are mean, Psychology Today has some possible explanations. Regardless, it doesn’t help caregivers come together as a community. It doesn’t help us help each other. It doesn’t help us get the support we need from the medical community, our friends and family, nonprofits, or the government. All it does it hurt people.
No two people are going to have identical experience or challenges. I know people in my home area who are struggling with bigger issues than I face. I also know people who assure me their load is lighter than mine.
Caregivers have dramatically different experiences, but we still have a lot in common, which is why we get lumped together. So, how can we support each other?
We’re here to feel less alone. Let people know you can relate to what they’re saying without shouting over them.
If someone asks for advice, read their whole story. Offer advice for them, not you. Share your experience while respecting that we each live different lives.
We’re dealing with different things and coming from different places, but we have a lot in common. Respect that.
Not everyone is a full time caregiver. This is not a contest to see whose life is hardest, who’s the last appreciated, who’s the most bitter. If it is, I’ll gladly let you win.
It is not more noble to be a martyr. Perhaps quitting your job was the right choice for you. Perhaps residential care was the right choice for someone else. Perhaps someone can afford full time aids. Perhaps tough love was in order. Perhaps unconditional support was the best choice. Each situation is unique. We’re here to support and share, not to judge.
Sometimes you need to let it out. Do it in the forums or in the Facebook groups. Don’t attack another community member. And then move on. Negativity will poison this community. The point of venting is to let it out, not marinate in it.
The world is a tough place. When you’re taking care of someone that’s sick or disabled there’s hardly any support. We’re all hurting. We’re all in impossible situations. We’re all tired. But we’re here because we know that finding people on here will make our lives easier. Let’s get started.
How do people cope when their lives are turned upside down?
A young newlywed pulls out of his garage on a seemingly average day, headed to work. He never makes it to the office – a horrific car accident causes permanent paralysis from his neck down.
An active woman about to retire and travel with her spouse to their dream destinations has a massive stroke, resulting in loss of speech and severe memory and personality deficits.
A mother with small children anxiously tells her husband that her legs have been going numb. Tests reveal that she has multiple sclerosis.
One‘s immediate reaction is compassion and concern for people stricken with such serious medical conditions, as it should be. But there are others severely impacted also, and they too are in need of support. The Well Spouse Association is a nonprofit organization whose mission is to offer peer support to those caring for chronically ill or disabled spouses or partners. Our motto is: When one is sick, two need help.™
Often spousal caregivers first go through a heroic phase. They hope that by finding the best doctor, the best physical therapist, and the right medications, their spouses can be restored to their previous health, or at least that the disease’s ravages can be halted or minimized.
Whether the ill spouse remains stable, but impaired, or has a degenerative progressive illness, “well spouses” often experience a multitude of emotions, including ongoing grief, anger, anxiety, resentment, depression and loneliness. Acknowledging these emotions can trigger a deep sense of guilt when the spousal caregiver is unaware that these feelings are appropriate to the situation.
When well spouses find WSA, they feel greatly relieved that they are finally among others who truly understand their journey and can assure them that their feelings are normal. Family and friends, while well-meaning, often say the wrong things, causing well spouses to feel isolated.
Studies have shown that spousal caregivers experience more depression and stress because they are usually with the ill spouse 24/7, and are less likely to have help than other types of caregivers. Spousal caregivers often find themselves in charge of almost everything – all household maintenance, all child care, all chauffeuring, cooking, cleaning, and shopping, and the managing of all financial and insurance matters. This is on top of working outside the home to provide income, and whatever hands-on care the ill/disabled person needs. Each day brings reminders that they have lost their life partners in many ways, as well as their dreams for the future with their spouses.
How does WSA help?
We have a forum on our website – registration is required and applicants are screened, ensuring that you can speak freely and safely. We have instant chat. We have face-to-face support groups in many areas of the country. We have telephone support groups geared toward specific segments of our membership who don’t have a face-to-face group in their region. We offer respite weekends and a national conference. Mainstay, our bimonthly member-written newsletter, is full of book reviews, articles on how our members cope, what our local groups are up to, and more. We have a mentor program for those seeking one-on-one help. Finally, we also have a Facebook page where we post links to articles related to caregiving (frequently those from The Caregiver Space) and a Facebook group (Spousal Caregivers – Well Spouse Association).
It is such a relief to discover that you aren’t alone in your feelings.
It lifts a weight to be able to talk with others going through the same situations. Especially with Valentine’s Day coming up – who else could you complain to about how much you hate hearing about others’ romantic getaways, while you’re at home bathing and feeding your spouse? We get it, which is why we tell our members that with WSA, “you are not alone.” We also share practical tips and best practices which make our daily challenges easier to handle. Sometimes the advice from one’s peers in the trenches is more useful than that from the most renowned medical specialists!
Please visit our website, www.wellspouse.org , call our office at 1-800-838-0879, or look for us on our Facebook page for more information. Our dues are affordable, and if you’re a military spouse, your first year is free! Join our club that no one wants to be in – but that welcomes you with hugs and understanding.
This mesothelioma support community connects mesothelioma patients and their caregivers to free patient resources, helps navigate treatment and financial options, and has special sections for caregivers and veterans.
[title text=”Melanie E. Jimenez, Understanding Schizophrenia“]
When I was little my family and I would go camping and each night we’d gather together around the warmth of the campfire and we’d tell stories and make s’mores. We’d stare across the flames and embers rising into the darkness and talk about life. In the warmth and glow of the fire’s flames we would be comforted by each other’s presence and in those moments we were one family, understanding each other and loving each other. Like it always does, the fire would die down and we would go to bed wondering what the new day would bring us.
Then in the Spring of 2012, my son had his first psychotic break.
In the hours and days afterwards, I began to realize that I was dealing with something much bigger than anything I had ever known and with my son and my family, we headed into the unknown in front of us completely unprepared for what we now knew was acute paranoid schizophrenia. Under the suffocating blanket of the psychosis tangled in my son’s brain and all of my questions about what this meant for his future and for mine, I began to reach out to people in the same situation as mine and I began a blog and caregivers support group about loving someone living with schizophrenia. It was there that I found myself, once again, around a crackling campfire. This time though, it was metaphorical but just as real as the warm fires in the dark woods of my childhood.
Now, here I am, an often stumbling, yet finally on my feet caregiver for my son and as such, I find myself gathered around the proverbial campfire this time though with others who have loved ones with schizophrenia.
Talking openly myself, I seem to have given permission, in a way, for others to begin telling their stories too. Out of the darkness of the sometimes suffocating stigma that surrounds schizophrenia, we are all here now, each of us with our stories to tell, staring across the open flames that warm us. We gather close to each other and we stare into the darkness of this illness and the unknowns that are our future.
That we are all here together, that we can sit together in our circle around this campfire, that each of our stories are so different yet so very much the same, makes me feel like I’m not alone in the darkness. By finally beginning to bring to light the realities of schizophrenia and what it takes to care for someone living with it we have opened a dialogue heard by the world. Often there is silence, though, as the fire crackles and turns to glowing coals and it is in that silence that we speak our loudest words. The silence of a shared knowledge, a shared camaraderie, and a shared grief is our unspoken bond. We make eye contact across the fire and nod slightly and say a thousand unspoken things while tears well in our eyes.
Here is the thing though: I am not alone. WE ARE NOT ALONE. We have this fire, its warmth, and we have each other.
Our sons, our daughters, our husbands, our wives, our loved ones with schizophrenia are not alone because we are all here together with one goal and that is to better understand, to find love in the unfairness of our fate, to learn from each other, to teach the world about the realities of schizophrenia and most importantly to sometimes find laughter in between it all.
What brought us together in the first place is this illness but what keeps us together is that in the end we found friends we can depend on, even if all we do is sit in silence together around the campfire.
Melanie E. Jimenez is a writer, blogger, and contributor to websites focused on mental health and schizophrenia, including:
The most important thing you can do for yourself as a caregiver is to create a support network. Family, friends, medical professionals, fellow caregivers—these are all people that will become your foundation and your source of strength. When you devote your time and energy to caring for a loved one, you are susceptible to burnout, depression, sickness, and stress. With a healthy support system in place, you will be cared for when life happens.
Informing friends and family
Family and friends may have always been the center of your foundation. But caregiving is an isolating task that can draw you away from the people you love. Therefore, it is important that they stay informed on your loved one’s progress and your well being through email, phone calls, coffee dates, or any other method of communication. Caring Bridge is a free, user-friendly tool to keep the people in your life informed on you or your loved ones’ health challenges. CarePages is a similar resource. Your friends and family want to hear from you even if the news might feel consistently somber. Connecting with your family by writing about your experience in journal or blog form is particularly helpful. It allows you the relief of getting some of your struggles, hopes and fears out of your head and it also gives your family and friends the ability to have a greater understanding of your journey.
Connecting with other caregivers
As much as your family and friends love you, it will always be difficult for them to understand the challenges and emotions caregivers face. Although you can depend on them to listen and support you, it is immensely beneficial to share your journey with another caregiver. Typically, only fellow caregivers can offer you the strength and hope you need to get through each day. Fortunately, the Internet has made the search for, and connection with, other caregivers fast, easy, and virtually universal. There are many websites you can use to find other caregivers, like Gilda’s Club or the National Family Caregivers Association (NFCA). The NFCA has a great caregiver Story Project/ Pen-Pal Program that enables you to search for caregiver’s stories, submit your own caregiver story, and initiate a pen-pal relationship with another caregiver. Use our live chat feature to speak with someone directly!
Form a core group of caregivers online, in chat rooms or on forums and check in with one another often. See how their loved ones are doing and how they are feeling about it. Some people in your group may have already gone through what you are facing and can offer advice. Others may look to you to help them get through this time. No matter what, you all share the identity of caregiver and the ability to relate to one another.
Find a professional caregiver to support you
There may be times when your friends and family are unavailable to cover for you when you need a weekend to rest. Or perhaps there is a day when you need some extra support caring for your loved one. Don’t be afraid to reach out for some professional support. Look for home health aides or certified nurse aides, ask about their support capacities and their training, set up an interview or a trial. Caring.com can help you with your search.
Getting involved with support groups
In addition to your family, friends, and fellow caregivers, a structured support group may be of great benefit. You can find support groups online in designated chat rooms or in person groups at your hospital. There are also telephone bridged support groups. You can find groups to help you understand and cope with a specific affliction or a group particularly geared to helping caregivers. Today’s Caregiver, a subsidiary group of Caregiver.com, has a wonderful directory of support groups in the U.S. and can easily guide you to one in your area.
Organizing your support system
Make a list of friends, family, neighbors, caregivers, and professionals that are available to support you. Divide them into groups: who can be there for you in an emergency? Who can you call to talk to every day? Who is able to take care of your loved one when you need time to take care of yourself? Who can help you keep your network informed on you and your loved one’s journey? Keep that list somewhere you can reference it every day. There will be times when you feel in control and times when everything seems out of your grasp. Reach out. Pick up the phone and make a call to someone in your caregiver support network. The people who love you want to lend a hand. They might not know how to be of service you so it’s up to you to tell them. A lot of family and friends feel helpless when someone they know is sick. You are helping them by giving them something to do that will support you and your loved one! Share the Care is an incredible non-profit that can guide you through the steps of setting up a support network. Cappy and Sheila, founders of the non-profit, understand how mentally and physically draining caregiving can be without any outside help so they published a book to give others a framework to start building a caregiver support network.
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.
In the United States, there are an estimated 1.4 million caregiving youth (children under the age of 18), and nearly 10 million Millennial caregivers (aged 18-34 years old). Of the millions of young caregivers, I believe every single one is an advocate. Advocacy means that you speak up for another person’s needs, views, and try to help them get support. As caregivers, advocacy is a way of life. You may speak to health or social care professionals on behalf of your family member, coordinate service care delivery, oversee your family member’s medication administration, and manage your family’s household. You are the expert on your family member’s care.
While you are well-versed in advocating for your family, you may find speaking up for yourself more difficult to do. As a young caregiver, self-advocacy can present its own set of unique challenges.
What are barriers to self-advocacy?
Lack of awareness in society & unsupportive environments: Unfortunately, many people do not yet recognize the vital role young caregivers play in our society. This lack of awareness often means that people do not understand your caring role and how it can impact all parts of your life. Society also tends to overlook and disregard the experiences of young people with caregiving responsibilities, and health professionals may not view you as a “caregiver” because of your youth.
Fear of mistreatment & associated stigma: You may stay quiet about your caring role because you don’t want well-intentioned professors, bosses, or friends to worry over you and treat you differently than everyone else. At work, your supervisor or co-workers may not understand your life as a caregiver, and you may might fear losing your job. If you provide care for someone with a socially stigmatized condition, e.g., mental illness, visible physical disabilities, or HIV-AIDS, you may fear that by speaking out as a caregiver, you will also “out” the condition of the person you care for.
No support available: In some situations, those around may already know that something is “up”, because of late or missed days at school or work. Conversely, you may be very open about caregiving. In such scenarios, people are aware of your caring role, but you find that there is little or no support available to you as a young caregiver. Supportive services may be directed towards your family member, rather than you, the caregiver.
What are ways to self-advocate?
Despite its challenges, the act of speaking up for yourself is impactful and meaningful. Every time you engage in self-advocacy, you continue to spread awareness about young caregivers. Even in the seemingly small moments, your words and actions demonstrate to society that young caregivers exist and matter.
Express your needs and desires within your family: To combat potential feelings of resentment, it is important to keep the lines of communication open in your family. You may want to engage in family group conferences to discuss current and future care plans. If you foresee sharing or shifting caregiving tasks to younger siblings, you’ll want to discuss with them the practicalities of the caring role and what this will mean for everyone in the family.
Inform doctors, nurses, and other health care professionals that you are a critical participant in your family member’s care, and express your desire to be involved in discussions.
Tell professors, administrators, work supervisors, and friends about your caring role and the ways it impacts your life. This may mean requesting a “grace period” to submit assignments, asking for flexible schedules and work hours, requesting to keep your cell phone turned on and kept with you, in case your family member needs to reach you in an emergency, etc. Self-advocacy in the workplace also means knowing your legal rights, so that you may be aware of potential issues of workplace discrimination.
Ask for help: Seek out extended family members, neighbors, or friends to help with caregiving tasks, or to give you a bit of respite. You may also wish to contact supportive organizations for help.
Monitor your own mental health and well-being: Take breaks (even just for a few minutes), practice self-care, exercise, and maintain a healthy diet. Keep up to date with your own doctor’s appointments and annual tests. You may wish to attend support groups and/or seek out a mental health professional if needed.
Get involved: Call or write your government representatives and vote. Use technology and social media to your advantage: there are several online caregiver support groups on Facebook and Twitter, and they can be a great way to meet other caregivers, ask advice, or vent! You could start a blog about your experience as a young caregiver or post videos to YouTube. You may also want to share your caregiving story through participation in caregiver research studies; this can be an impactful way to help other caregivers on a wider scale!
Remain encouraged as you seek to advocate for yourself. You serve an irreplaceable role in our society and you deserve recognition and support!
Can you think of other ways to self-advocate? How have you advocated for yourself and did you find it helpful? Please share your comments/suggestions below.
This article was originally published on the website of Christine M. Valentin, licensed clinical social worker, and may be accessed here.
We have a huge, vibrant community of caregivers. People are experiencing a whole range of emotions about the changes happening to the health insurance landscape in the US.
Regardless of who you voted for (if you voted), I bet you want affordable, quality health care for yourself and your family. We all have that in common.
In fact, as caregivers, we have a lot in common, despite how different we might be outside of the caregiving world.
We can’t support each other if we’re busy tearing each other down.
The Caregiver Space isn’t an organization with a staff of writers and social workers and web developers. It’s a community. This is a place by caregivers, for caregivers. The articles are written by you. The support groups are run by you. You answer the questions people post in the forums. You decide what this community looks like…or if we have a community at all.
We have less than a quarter of a million people in our community at The Caregiver Space, which is a tiny fraction of the caregivers in the US…and an even tinier fraction of caregivers around the world.
There are over 34 million informal caregivers in the US. There are several million professional caregivers in the US. And there are many millions of other English speaking caregivers around the world.
That’s a lot of different people, in different situations, with different hopes and dreams and ideals.
The cool thing about the time when a bill is being written is that it’s an opportunity to contact our representatives and ask for the things we need as caregivers.
If you’re worried about what’s going to happen, call your representatives and let them know. Facebook posts don’t change things.
If you’re happy with the new changes, call your representatives and let them know. They would love to hear that.
The thing is, no politician has been talking about how they’re going to help caregivers. With all the talk about patients and healthcare, we’re still not even on their radar. We have to ask for the help we need or we’ll never get it.
It’s now 3 AM and your elderly one wakes you up for the third or fourth time that night asking for help getting to the bathroom. With no desire or patience left, you tiredly wake up and assist him or her. Since this has occurred every single night of the week, you start to question if this is something you can deal with any longer.
Health conditions are the main causes why seniors frequently get up during the night. This scenario is very common; and often times it’s the weary spouse, adult son or daughter who has accepted the caregiving burden.
So you’re not getting any sleep each night because your elderly keeps you up all night, solution? Overnight diapers. They will make you and your senior’s life a whole lot easier.
Because of its absorbency, overnight diapers are meant for extended time use. Typically (depending on the brand) the diaper has a top layer that absorbs the urine from the skin, leaving a dry feel on the diaper surface, which prevents any skin infections and rashes.
Don’t Forego Sleep
If you’re sleep continuously is interrupted each night because of your elderly, figure out other ways to get a good sleep. Some examples include napping when the person you’re caring does, or ask another family member or friend to come over for just a few hours while you nap. We all need to sleep in order to function throughout the day, so don’t neglect it!
This is a hard one, clearly. It takes a lot of patience when it comes to caregiving. There may be plenty of times where you get frustrated or annoyed and want to just give up. But through the frustration, take a deep breath and address the situation once you calm down.
Some ways to stay relaxed is taking some time to yourself, while you’re not caring for your elderly. Try a yoga class or join a support group. Support groups can really help hash out your frustrations as you can connect and relate to others in the caregiving communities who have similar experiences. They can also give you guidance, tips and support.
Don’t Suffer in Silence
Most caregivers also have full time positions in addition to caretaking their loved ones. If you ever feel like you’re taking on more than you can manage, let your other family members or even close friends know. Asking for help is never a bad thing; if you ask them nicely and calmly, they might lend you a helping hand.
Always speak up because no one has the capabilities to read your mind or even realize you’re feeling overwhelmed.
Always Make Time for Yourself
Caregiving can be very time-consuming, but it shouldn’t take over your life, as you need time for yourself too! Make time to see your friends or do an activity that you enjoy. Giving time to yourself will not only be good for you but will keep your insanity in check.
Talk to the Doctor
If you’re elderly ones are constantly waking up in the middle of night due to conditions such as insomnia or chronic pain, have a chat with their doctor. A medical professional may be able to pinpoint the causes of these conditions and prescribe medication or make specific suggestions for the problems.
Create a Safe Environment
With serious conditions such as Alzheimer’s disease, seniors may have a number of triggers that could occur any time during the night.
To avoid any bad situation from happening, you should consider removing all dangerous objects like scissors or knives out of site. To prevent any falls, try placing night lights or low-level lighting around the room to create safe walking paths. Or if you really want to keep them in check, consider getting a baby monitor in order to hear a senior moving around at night. Don’t let the obstacles and challenges of overnight caregiving take over your life. Take these tips into consideration and you will conquer the overnight caregiving duties like a champ. Just always remember to breathe in and out and relax.
As family caregivers, it can feel as though there are more losses than gains in our lives. Our loved one loses their health and independence, and we can lose our time, identity, patience, and even careers. Change and loss become dependable constants in our caregiving life.
One of the most common complaints of change amongst caregivers is the feeling of isolation. With time as our most valued commodity and stress as our new and uninvited best friend, making room for the support we need is very often one of the first things we let fall by the wayside. We are simply too busy, and if we aren’t too busy, we are simply too tired to engage in the things that once made us excited.
Adding to that can be our friends who sometimes call less frequently, or make assumptions that we are probably too busy to attend the party and so the invite never gets sent, or we just can’t muster the energy to go to book club because it’d mean having to do one more thing that day. And sometimes it’s us who pull away from the friend that continues to perkily say of our terminally ill partner or parent, “They’re going to get better, I just know they will!” because that kind of fantasy doesn’t help us at all.
All of this is reason enough to say, “Good riddance!” to people for a while. Why bother with making plans you may have to cancel, attend parties that you could need to leave mid-champagne toast, or worse yet, need to get off the couch and fix your hair to attend? I give you full permission to say, “See ya!” to all that. But in saying goodbye I am going to ask you to say hello. Say, “Hello” to someone new, someone like you, someone who is also a caregiver. Why?
Sharing your experience with someone else that speaks your language with no need for translation is a powerful way to be supported by someone who understands where you are coming from. If there is only one thing that you do for yourself this month, I urge you to make finding a new friend in caregiving be that thing.
Where might you find your new BFF? How about daring yourself to attend a local caregiver support group meeting? Or, there may be people who are members of caregiving websites you visit (like this one!) that you could send an email to and introduce yourself. Or you could do what I did in one of the most uncharacteristic moves of my introverted life…
When my dad was living in the memory care unit of an assisted living, I knew no one who had a parent in the same environment. I felt like an explorer without a map. The pain of watching his decline was on certain days unbearable. Visiting with him daily, I began to notice one or two other daughters passing me in the halls with frequency yet we never gave more than polite nods of hello to one another. Until the one day my caregiving experience changed forever and for the better.
Dad was one of two men living in the unit. The other man’s daughter was one of the women I saw just about every time I was visiting my father. She and I had done a lot of hello nodding to each other.
One fall afternoon as I was leaving for the day, this daughter was walking out the door about 40-steps ahead of me. Giving no thought to what I was about to do, I sprinted up ahead to catch her. Winded and catching my breath (because caregiver’s true confession: I wasn’t exercising regularly) I introduced myself and quickly realized that I was talking to one of the sweetest people I would ever meet. She blurted out her latest issues; I nodded and responded with lots of, “Yes! Me too” statements and before we left the parking lot, we had exchanged emails and scheduled a lunch with another daughter whose mom was also living in the unit.
That lunch with two strangers had happened one year before my dad died. To this day, five years later, the three of us, now former family caregivers, are still friends. What is unique is that we each were born in different decades, yet the experience of caregiving let us transcend our ages. We spent hours sneaking out to the diner for lunch after visiting our parents to share our stories and latest caregiving conundrums with each other. We looked in on one another’s parents and reported back with anything worthy of concern. We would fill our email inboxes with funny stories and updates. We took proactive trips to visit the nursing homes that we would eventually need to admit our parents into after inevitable declines in their health. We combined our families and shared a Christmas celebration in the unit the year our parents were not well enough to travel. We were there at the funerals with lots of chocolate, flowers and emotional support. And, we were there and are still here to offer listening ears to the unique feelings that appear post-caregiving.
When I think of my caregiving friends, I’ve never felt to be truer the expression, “I don’t know what I would have done without you.”
Caregiving and the people you will meet change your life in the most new and unexpected ways. Why not go out and meet one of these people today? All you need is the word, “Hello!”
According to the National Alliance for Caregiving, nearly 20% of the U.S. adult population has taken on some form of family caregiver duties. Not only does full-time care demand time and resources, but it is evidently harmful to the health of the caregiver.
In fact, one study shows that healthcare costs for caregivers rise as their loved ones continue to decline. Even after the caregiving ends, the immune system can take up to three years to fully recover from the stress and strain of caring for a loved one.
Anyone who’s flown recently knows these familiar words: “In the case of a sudden descent, oxygen masks will fall from the overhead compartment. Please secure your own mask before helping others…”
With a little modification, this pre-flight advice may just save you from burning out: Before you care for others, please take care of yourself. If we’re going to be at our highest level, it’s critical that we take care of ourselves even as we care for our loved ones.
In this article, we want to briefly overview three essential ways to do just that.
1. Engage Family & Social Networks
As a full-time caregiver for elderly or disabled loved ones, you’ll want to tend towards isolation. After all, in home care can demand virtually all of your time, energy, and money. At the end of the day, the last thing you’ll be concerned with is keeping up your social life.
To combat this tendency, make it a point to reach out to family and friends. Additional support from your community will be crucial at every stage of this journey. Communicating with the outside world on a regular basis will keep you from becoming lonely and disconnected from the world.
2. Mind Your Own Health
As we saw above, caring for another can paradoxically take its toll on your wellbeing. One of your primary caregiver duties must be to preserve your own health first.
A nutritious, well-balanced diet will be crucial for keeping you in top condition. Regular exercise will not only boost your health but will help manage the heightened stress levels that come along with full-time care.
Naturally, adequate sleep will be vital to reducing caregiver stress and managing the physical demands of care. Be sure to check in with your primary care physician regularly as well.
3. Take Advantage of Specialized Support
There are more resources available to full-time caregivers today than ever before. Online, you can find information on everything from healthcare planning to end of life support. You can even join online community support groups to learn from others’ experiences.
You also need to connect with living, human beings in the real world. Websites like the Alzheimer’s Association provide listings of local support groups. You’re carrying a heavy burden. These groups will help you to connect with and be encouraged by people who know what you’re going through.
Finally, don’t be ashamed to take advantage of various respite care options. Whether you hire a nurse to come into the home for a break or you can make use of an adult day care center, respite care will provide you the break you need to regroup and take care of life’s everyday concerns.
Your caregiver duties will demand more than you ever knew you had to offer. Look after yourself along the way and be amazed at just how far your body will be able to sustain you as you care for your loved one.
Moments by William McDonald | May 25, 2017 | 2 CommentsI want to do this. I don’t want to do this. I love doing this. I hate doing this. I can do this. I can’t do this anymore. The Caregiver. By choice. Or no choice. You will be frightened. You will be alone. You will...
198 pages, Skylar Thomas Publishing (June 1, 2016)
Connecting Caregivers is a collection of writings by experts in the fields of aging, dementia, home care and other related fields, offering hard found wisdom and practical resources for caregivers. Ms. Linda Burhans, a caregiver advocate who has facilitated over 1,200 support groups and workshops for caregivers, contributes personal stories from her work and edited the book. She describes herself as the gal who cares for the caregivers.
A Book By Many Authors
Each chapter is organized under one of the three parts: “Learning to Navigate,” “Learning to Cope,” and “Learning to Accept.” Some provide detailed information about practical matters, such as finding the right home care service, while others offer perspectives on changing cultural attitudes towards aging. The topics do vary and each could be published as separate articles on their own. The information from one chapter does not necessarily relate to the following one. Readers may find the book most useful as a reference on specific topics, such as dementia care and the help a geriatric care manager or aging care specialist can provide to families in navigating the “healthcare maze.”
The chapters do not seem to be focused on specific perspectives or angles. Christine Varner’s chapter on signs and symptoms of dementia begins with her acknowledgement that she had trouble finding the flow of the chapter as she began to write, and follows with details about her dad’s diagnosis of Lewy Body disease. Some chapters seem like short notes. The chapter, “The Caregiver “AAA” Dilemma,” was two pages long and urged the reader to ask for and accept help.
Sprinkles of Inspiration and Pockets of Advice
Most of the chapters take on a conversational tone, as if a counselor is sharing advice with you. Ms. Burhans’ touching stories from her work with caregivers are scattered between chapters. Her story about Mike, who dyed his hair and dressed in clothes from his younger days to ignite his wife’s memories of him, is heartrending, while demonstrating how a bit of creativity can help connect with those suffering from dementia.Another memorable story is the one of a bedridden, former teacher who found purpose again in helping a child discover the love of reading.
The chapter, “Power of Story” by Paula Stahel reminds the reader that sickness does not remove a person’s lived past and that many have incredible stories to share. She suggests recording their stories by asking open ended questions and recording the conversations or hiring a professional historian.
Along with the inspirational stories, there is also advice on functional matters such as understanding home care options and legal preparation for incapacity. The chapters discuss the different kinds of dementia, meaningful engagement with those who suffer from it, and transitions to memory care communities. Authors also promotes journal writing and support groups as caregiver self-care tools. One author, Ms. Mary Jane Cronin, offers writing prompts for those new to journal writing.
A couple of chapters (“What Are the Signs and Symptoms of Dementia and What Should I Do?” and “Is a Memory Care Community the Right Choice for My Loved One?”) emphasize that there is “no heroism in doing it alone.” It is not only okay, but imperative, to ask for and accept help from family members in caring for sick loved ones, and to use resources such as adult day care, home care, respite care, and residential programs.
Don’t Forget to Connect With Your Loved Ones
An important message I got from “Connecting Caregivers” is that family caregivers must acknowledge their own feelings (for instance, of guilt, resentment, loneliness, confusion). With acknowledgement, a caregiver may begin to learn to accept what they cannot change and even to “just be” with their sick loved ones.
Ms. Carole Ware-McKenzie’s chapter has a great reminder for caregivers – see your loved ones as people. That’s often forgotten by caregivers as we juggle medical appointments, bills, and chores and sometimes treat them as responsibilities to bear. Ms. Ware-McKenzie writes, “[j]ust realize, when you are looking at the lady in her wheelchair, that is the sum of who she is. She had dreams, goals, and adventures that are still playing in her head.”
“Connecting Caregivers” affirms to readers the struggles of caregiving and offers possible ways to manage stress and challenges, and perhaps to even have fun while doing it.
Because only another caregiver can understand No matter who you are, who you’re caring for, or where you are in the caregiving journey, you’re welcome at The Caregiver Space. About us Overcoming opioids: The quest for less addictive drugs by STAT news | May 26, 2017 |...
It can be uncomfortable to do, but letting people know you could really use their help is important. Ask a neighbor if they could pick a few things up for you while they’re out. Let your community organizations know you could use a volunteer for a few hours to clear up your yard or keep your mom company. See if your friend would come cook dinner and eat with your family once a week. The more specific you are, the better your chances.
It can be a real challenge to break up tasks into pieces that strangers can help you with, so start small. Hopefully soon certain asks will be taken off your plate without you having to do anything about it — the neighbor who mows your lawn when he does his and the friend who’ll take your dad to the doctor every week.
People will say no and let you down, but people will also help.
Many people want to help, they just don’t know what you need. It’s like that friend you keep meaning to see, but never make real plans with — get specific and it’ll actually happen. People feel good about helping. Think of all the times people have helped you in the past — they’ll be there for you again.
Sometimes people offer to help just like they ask you how you’re doing today or comment on the weather — it’s just a reflex. They’ll be surprised to hear from you if you call them up and ask them to follow through.
Other people really mean it when they say they’d like to help, but they don’t know what to do. Often times they’ll come through if you ask them to do a specific task.
It can be frustrating to ask people for help multiple times and have them turn you down. Everyone’s busy, not just caregivers, but there are ways around feeling like coordinating help is more effort than it’s worth.
Apps like Tyze and Caring Bridge help you by saying what you need and when you need it and allowing people to step in when they’re available. When people offer to help, add them to your network of supporters on the app. Make a list of the things you need help with. Ask them in person or over the phone, too.
Medical professionals often have to put their guard up against getting too involved with patients, so they may cut you off or seem cold when you tell them how much you struggle. They may also not take the time to figure out what, exactly, it is you’re asking for.
If you ask direct questions — can I get help with this bill? can I get medication delivered? is there home care help available? — you may have better luck.
Ask yourself this
Do you want help or someone to listen?
If you’re frustrated with someone’s attempts at giving you advice, ask yourself what you’re looking for from the conversation. Do you want advice? Offers of actual help? Or do you just want someone to listen and encourage? Let them know what you want.
Do you want an expert or someone who’s been through it?
There’s a time when you want specific advice and a time when you’d like to commiserate and hear about someone else’s experiences. Remember that an expert may have never actually had to apply his or her advice. Each person’s experiences are unique, so what helped one person may not help you.
What am I asking for?
How much of the background information does someone need to know to understand how they can help you? So many times in life a brief question is more likely to get attention than a long story.
Who to ask
Your doctor likely has no idea how much things cost or what programs are available to help. Doctors also rarely have the time to listen. What you can do is ask your doctor or nurse to refer you to a social worker.
If you’re reading this and have prostate cancer, there’s a really good chance this article will help you. It’s based on my experience and will give you information on new genetic testing, based on a lot of research that can change your outlook for treatment, that leaves men with such dreadful side effects, and sometimes don’t even work.
Prostate cancer is the #1 most common cause of cancer in men worldwide and #2 in the USA. It is estimated that one in every six men will get it. Every 3.3 seconds a man is diagnosed with the disease. Every 20 minutes a man dies from the disease. ( “ZERO prostate cancer–2017 stats”) The exact cause of prostate cancer is unknown. But recent studies indicate the likely cause may be diet. You know the old saying, you are what you eat.
Read this article carefully if you or your loved one has the disease or, share it with someone who does. It will help you by guiding you to the right questions, to ask your doctor. Genetic testing has allowed me to relax and take my mind of what doctors said, which, was a clear cut case for surgery or radiation. I have a significant prostate cancer, but genetic testing says, treatment will not benefit me. And I’m not dying, or sick.
Genetic testing is not on the protocol yet, for weighing out treatment options. If you or a loved one are diagnosed, ask about Genetic Testing. As you read this article, you’ll see the major difference/impact it has made on my life and how it totally changed my treatment strategy.
Here are some of the early warning symptoms, that may or may not be prostate cancer:
Burning or pain during urination,
Difficulty urinating, or trouble starting and stopping while urinating,
More frequent urges to urinate at night,
Loss of bladder control,
Decreased flow or velocity of urine stream,
Blood in urine
Normally, when the symptoms show up, it has not been caught early, but perhaps early enough to be treated successfully–All men over 50 need to have their prostate checked and a PSA blood screening annually–if a father or brother has had prostate cancer, some studies suggest a man should consider having a PSA test as early as 35 years old.
In an effort to keep this article simple, I’m going to speak about what the man needs to do, and not about all the scientific stuff that’s better off left to the scientists. Science is complicated, what needs to be done to save, prolong or provide some quality of life, not so much.
It’s virtually impossible to reach out and touch the lives of many men, warning them of the dangers of this dreadful cancer. Why? Most men don’t want to talk about a disease that is so personal, and private, the words need not be spoken. Therefore, the voice of reason is silenced.
Most prostate cancer deaths in men occur between the ages of 50 and 60, then jump to 80 and above. Reason being, younger healthy men will not go get screened, it can’t happen to them. So they say. Ignorance is bliss. And that’s basically the attitude I took and part of the reason why I got myself in a bit of a mess, which, against the odds, I’ve overcome. For those over 80, they’ve usually had it for a number of years and it’s run its course.
Through my story, my goal is to help you “safely” use “Active Surveillance” when possible, and keep your prostate in your body as long as you can, if that’s your desire. Treatments, such as surgery and radiation come with some not so good side effects. The side effects that effect most men after treatment are, erectile dysfunction and incontinence. And both are major problems. Quite common.
If you’ve already had the surgery, the following paragraphs may apply to you.
In 2016, UCLA Urology released guidelines on how successful radical surgery and radiation are. According to UCLA Urology, 50% of all surgeries to remove the cancer, fail. The cancer comes back. Radiation has a 27 percent likely hood of the cancer returning.
Genetic testing-Decipher Biopsy: This is one of the two genetic tests I had and talk about. And how it could help you. Decipher biopsy is supported by in depth clinical studies.
Decipher biopsy-post op. If you have surgery and it fails, the Decipher biopsy may be your saving grace. Once the surgery has failed and you’re scared of the relapse, have the Decipher Biopsy.post op, if you can. Decipher literature states that 90% of those that fail surgery, will not develop metastases or die of prostate cancer. Huge numbers. And you need to know that. This means that – if treated after the failed surgery, patients may receive no benefit at all. Worse, they may be subject to unnecessary complications caused by post-surgery treatment for prostate cancer. Which is radiation with ADT (androgen deprivation therapy) that reduce levels of male hormones, testosterone and dihydrotestosterone. The urologist from Memorial Sloan Kettering, Urology Group calls ADT, a form of castration. Very primitive and doesn’t work all that well.
Decipher-post op, may help avoid over-treatment by reclassifying those men originally identified as high-risk, who are unlikely to develop metastatic disease.
That means, if your surgery fails, check with your urologist/oncologist and see if you can have the Decipher Biopsy-post op. In many cases, it will allow a patient to avoid further intervention via radiation.
In clinical studies of high-risk men after surgery, Decipher reclassified 60% of men to lower risk categories3. 98.5% of patients reclassified to low risk by Decipher did not develop metastasis within 5 years of radical prostatectomy.
Across multiple clinical utility studies, 39% of physicians changed patient treatment planning after reviewing Decipher results 4,5, resulting in a 50% reduction in radiation therapy planning in those identified as low risk by Decipher.
What made me go public with my prostate cancer?
Almost six years ago, I watched in pain, as my wife Annie lost her battle with a dreadfully painful cancer, multiple myeloma, that left her with many broken and very badly diseased bones.
Once prostate cancer spreads to the bones, Dr. Grant Rine, radiology/oncology, Wichita, Kansas, who was Annie’s radiologist, told me prostate cancer can be like Annie’s. Very painful and debilitating.
So, I’ve decided to lay all the cards on the table, and discuss a subject that most men will not.
This is important information and can save some lives through early detection, not to mention the burden and emotional instability the treatments can place on a patient, and most of the time the effects it has on the woman or partner in a relationship. I will talk about some recent techniques that make the decision on when to have radiation or radical surgery much easier. And discuss the possibility of being over treated, meaning, having treatment too soon, when treatment may not be required for several years. Most often, but not always, prostate cancer is detected when it’s low grade and grows very slowly.
During a routine physical exam by my family doctor in Jan 2016, he noted that my PSA, a simple blood test that measures the level of a protein called, prostate-specific antigen, a part of the screening for prostate cancer, was still elevated at 5.40 ng/ml, and that I needed to go back and see Dr. Byrd, my urologist. I was scheduled for an appointment to see Dr. Byrd on, I believe Jan 21, 2016. (Note: Again, If you are over fifty, you need to have your primary care doctor check your PSA annually.)
Most insurances and Medicare recognize a PSA score of 4.0, as the standard when action needs to be taken and will be covered by them. Under 4.0 they won’t usually do anything, or pay for anything, other than the screening. Of course, once diagnosed with cancer PSA tests are administered as needed.
On the 21st of Jan, 2016, I saw Dr. Byrd. After chatting with me about my PSA results, he leaned over and got a plastic glove out of a box, which was my cue to lower my pants. He then had me lean over the bed and he inserted his finger into my rectum to check my prostate for nodules or any enlargement. To the touch, my prostate was normal.
After the examination he told me that as I had no signs of infection or enlargement of the prostate, which can raise the PSA levels, my chances of having prostate cancer were about 35% and it would be wise to get a biopsy and rule it in or out.
There was no hesitation in my voice, as my PSA score had been elevating slowly over the past 3 years, starting in July 2013 when it was 4.20. During that time frame July 2013 to Jan 2016 I had 5 screenings and all were elevated but one, and it was 3.84. So, I kind of knew I had prostate cancer. I had no symptoms other than the PSA score.
Those three years that my PSA levels were elevated, I was in a difficult battle with grief, over the loss of my wife Annie. I ignored the possibility of cancer, not wanting to talk about it. But still, I spent a lot of time doing research, reading anything I could on the cancer, to include understanding the treatment options, all the side effects of the treatment, and the biopsy. Now I would be putting all that knowledge to use.
Feb 3rd, 2016, I had my prostate biopsy. I was not anxious, in fact, I was very calm. The nurse left the room while I stripped down and put a gown on. She then came back in, asked me to set on the bed and told me that the doctor would be in soon. (Three days prior to the biopsy I was put on antibiotics to help ward off infection.)
When Dr. Byrd came in, he had me lay on my left side, with my buttocks extending a fraction over the edge of the bed. He then inserted the TRUS probe, which is about the size of a finger into my rectum, for a guided needle biopsy. A needle is inserted through the probe to numb the prostate before the tissue samples of the prostate are taken. Once numb, Dr. Byrd went all around my prostate and took 12 core samples. The procedure took about twenty minutes and although uncomfortable, was not painful. (note: some doctors do the biopsy while the individual is lying on his back or stomach)
After the procedure he told me that I would have some rectal bleeding, especially during bowel movements for a few days, and maybe longer. The blood in my semen can last up to 6 weeks, and some cases 3 to 4 months. All of which is normal.
My rectal bleeding was over in a week or two at the most, and semen was normal in about three weeks. In the semen the blood is usually a rust color and as it heals, turns brownish. My blood looked like Ketchup for a few days, then turned to the rust color.
It’s okay to have intercourse after a biopsy, but studies suggest you wait a couple of days, as the strain may cause more blood in the semen. You’ll know if you’re aggravating your prostate by the color of the blood. It’ll be bright red.
Everything we’ve talked about so far has been relatively benign or straight forward. From this point on, my life got very tricky, dealing with both the known and the unknown.
Through this article, hopefully, I can get a dialogue started for you and perhaps help you understand this insidious disease, a little better.
On 13 Feb, 2016, I went back to Dr. Byrd’s office and received my pathology report. Out of 12 core samples, 6 were malignant. I knew that couldn’t be good.
I essentially have a high volume cancer, meaning, in my case, it’s covering approximately half of my prostate. Do to the high volume, after I have treatment, surgery or radiation, the cancer has a 50% chance of coming back. Low volume cancer, indicates a low risk of returning after treatment. And therein lies the problem for me. Surgery may or may not help me. Studies show, that a patient with a high volume cancer, with 50% volume, don’t do very well long term. And that’s with or without treatment. My cancer was not caught as early as we first though. Lack of symptoms, or failing to recognize the symptoms caused the problem for me. (Only about 25% of all men with an elevated PSA count have prostate cancer.)
But, my case is rather complicated and confusing as my PSA score is not indicative of a high volume of cancer. Still, half of my prostate is cancerous, so, it is what it is.
Five of the samples were low grade cancer, Gleason score of 6. But one was intermediate grade with a Gleason score of 7. Essentially, I had an intermediate grade cancer due to the 7. And that one sample is what’s causing all the problems. A Gleason score of 8-10 is a high grade cancer, likely to spread. The pathologist assigns the Gleason score.
After Dr. Byrd spoke to me for awhile, he gave me a list of treatment options. The two viable ones were, radiation or surgery.
(Note: There are other treatment options out there. Including advanced cancer clinical trials. Check out/search for: UCLA Medical Center, #3 ranked Urology Group in the country.
He asked me what I wanted to do.
I told him nothing at the moment, I needed some time to think about it. I asked for three months with active surveillance, and he said okay.
All the literature and research I’ve read says, upon initial diagnosis, unless the cancer is considered high grade, step back, take some time away and do some research on your options.
For whatever reason, I was still uncomfortable with the situation as it presented itself. So I said to him, I’m supposed to make a major life changing decision based on this information. Is this it!
He thought about what I said for a minute, then said, there is one thing we can do. A Prolaris Biopsy, but it’s expensive and your insurance might not pay for it. It could be as much as $4,000, or simply a co-pay of $379. He had the nurse run it through my insurance, Medicare-Tricare for Life, and it was covered 100%. I said, let’s do it. He smiled saying, it will be interesting to see just how involved the cancer is.
Prolaris testing is a genetic test of a sample of the biopsy I recently had. If you or a loved one has prostate cancer, it can guide you on whether you need treatment right away or if active surveillance is appropriate. It would be wise to hold onto your prostate until you need treatment.
To a urologist or doctor, the smart thing to do is get the prostate radiated, or have radical surgery to remove it. I understand their thinking, that a removed cancer can’t hurt. But as you’re seeing it a bit more complicated than that. Ultimately, it’s your decision.
Three months ago at my prostate support group, I watched a 6 month old video. The speaker was one of the top urologists in the country. He was working at Memorial Sloan Kettering Hospital, Urology Group, ranked fifth best in the nation. He said, one of the most difficult challenges for him is seeing all the men that come to him for help. Their sad statement is–why did I have surgery so early, when I probably had several years before needing treatment. According to the urologist, it happens because the men are freaked out by the cancer, don’t understand it and just want it out. Of course, the doctors are happy to oblige them, as they want it out too.
And then of course, there’s this: In 2013, over 15 billion dollars was spent on prostate treatment. That’s a lot of money.
Remember what I said earlier. “I’m supposed to make a major life changing decision based on the limited information I had.” I couldn’t do it. And you need to think about it.” If appropriate, have genetic testing. Your doctor will tell you if that’s a viable option.
After the biopsy report comes in, make sure you get a copy of the pathology report, chill, and if need be, make a request for the Prolaris biopsy, if you want to go that route. Once that’s done, you can compare the two and if you were leaning towards treatment, radiation or surgery, there’s a 40 to 50 percent chance you will change your mind and choose active surveillance.
March 14th, 2016, I got my Prolaris results back.
Prolaris staged my cancer at T1c. Which is a low stage and means it’s still contained within the prostate. Pathology does not stage the cancer, but is one of the factors in staging.
Prostate cancer is staged between one and four. One being the best, four being the worst. UCLA Urology website breaks that down.
Staging the cancer is one of the most important factors in choosing treatment options. Often times treatment choices are based on staging. So, make sure your cancer is staged. Ask your urologist or oncologist what stage you are in. It really does matter.
Here’s what my Prolaris said: “This patients 10 year risk of prostate cancer specific mortality is 4% with conservative management.” “Mortality risks could be altered by various therapeutic interventions.” In other words, if I go on active surveillance, have a PSA test every 3 months, and a visit with my urologist, that is considered conservative management. If something were to go wrong, the doctor would likely detect it in time to do treatment. Surgery or radiation.
And every day I don’t need treatment, is a good day.
When I left the doctor’s office that day, I was upbeat and feeling good. If I hadn’t pushed for more information, I would never have known about the Prolaris test. And, I now knew for sure, I was hanging onto my prostate gland and not in any danger at the moment. I would be seeing Dr. Byrd again on May 13th, 2016 with fresh PSA test results.
May 13th, 2016, I walked into Dr. Byrd’s office. We had the usual chat, and he told me my PSA score was 4.6, down from 5.40. As we knew the cancer was still there, it was a good result, but didn’t mean much at the time.
Dr. Byrd asked me what I wanted to do, and I told him I wanted 3 more months. I think it kind of aggravated him a bit as he sharply said, Bob, you’re going to have to deal with this sooner or later, it’s not going to go away.
Dr. Byrd was advising me, but not in a way that I didn’t have some wiggle room to make my own decision. In other words, I’m not going against medical advice, I actually agree with him on surgery at some point, but I want more time and information before I make a decision.
Before I left, I told him I’d like to go to Kansas City, and get a prostate specific MRI. Once I had those results, making my decision would be based on everything I could possibly know. So I thought.
To my amazement, he said we now have the same MRI technology here at Wesley Medical Center as Kansas City, and training the techs is ongoing.
Since I was due to see him again in mid Aug, we set the MRI up for the first week of August. He said he needed 6 months between the biopsy and MRI, in case the prostate was still inflamed a bit.
August 1st, 2016, I had my prostate MRI. The urologist would now be able to see the cancer, up close and personal. According to the radiology tech, I was the first patient to have the new prostate MRI in our area. Which may or may not be true. I was in the tube from 1pm until 2:55 pm. Allegedly, again, according to the tech they took 2,000 pictures. Seemed like a lot to me, but they also took pictures of the surrounding area looking for any signs of cancer in the bladder or pelvic lymph nodes.
A week later I had my PSA blood work done, with the results being faxed to Dr. Byrd.
August 15th, 2016, I went back to Dr. Byrd’s office with a copy of the CD given to me after the MRI to, hand carry to my appointment.
Dr. Byrd went over the written report with me. The good news was, we now had a definitive determination that the cancer had not spread beyond the prostate as my entire pelvic area was clear. It’s never 100 percent for sure, but it looked good and the best they can do at the moment.
The prostate was basically as he thought it would be. There was one area, the Gleason 7, I talked about earlier in this article, that was and is concerning. This is the exact wording on the report. “High clinically significant cancer is likely to be present.” I knew it, but not in those worded terms.
My PSA had dropped again, from 4.60 to 4.30. I asked him why that was happening and he said, to drive me crazy, meaning him.
He went through all the paperwork, then shocked me by saying, if I treat you now, I run the risk of over treating you. He said, I could have three more months of active surveillance.
Over treating means, treating me before it was clearly necessary. Dr. Byrd had been trying to get me to have surgery or radiation, but for now, it seems that won’t be necessary.
During our visit I spoke up, telling him I needed four more months. While I was explaining myself to him, (I wanted to go spend 50 days in Northern California Salmon fishing), his head was leaning over with his eyes closed and his fingers seemed to be massaging his eyes rather roughly. He was rather deep in thought. However, in the end he said, he’d see me in four months.
That was a high five moment for me, but he didn’t know that.
But as I was starting to learn, sometimes when things seem to be too good to be true, they may be.
Aug 26th, 2016, I got a call from Lauren, Dr. Byrd’s nurse, who said that Dr. Byrd had rescinded my active surveillance program for now. He apparently looked at the CD of the MRI at some point after my appointment and saw something that was troubling to him. So in a group meeting with all the urologists they looked at the CD and the consensus was, I need further genetic testing.
Aug 29th, 2016, another sample of my biopsy was sent off, this time for a Decipher biopsy. This is a genetic test they normally use when a person has already had his prostate removed and the cancer is coming back. The patient is in relapse. In my case, it tells them if it’s high grade or not, gives a 5 year metastasis, and a 10 year prostate cancer specific mortality. And whether or not I’m a good candidate for Active Surveillance.
Some days, I simply feel like rolling the dice and taking the ten years or whatever I can get, and leave the cancer alone. Then, I flip the coin over and realize, what a selfish, foolish, act that could be to my loved ones. Then, I look at the fail rates of surgery and radiation and it becomes a catch 22. At some point, I’ll probably have to make a decision. Hopefully, way down the road.
On 15 September 2016, my Decipher biopsy came back inconclusive. The lab said they did not have enough information to make a determination. And I don’t know what information their speaking of. I do know the information was resubmitted a few days later.
What to know
Let me stress a couple of points. Having surgery or radiation can help and perhaps cure you when dealing with a low volume cancer, caught early enough. However, before having radiation or surgery, if you’re in your mid 70’s, you might want to have genetic testing if you can, giving yourself a chance to, perhaps, ride out the cancer if it’s low grade.
If you’re in your 60’s, the decision is much tougher. But, if you qualify for genetic testing, it will give you a good snapshot of how your cancer is behaving, and may prevent you having early treatment, that you don’t yet need. And you may be a candidate for active surveillance, which allows you get on with your life while seeing your urologist every 3 months for a PSA. And even if you don’t get the
genetic testing, low grade prostate cancer, may qualify for active surveillance. Ask your Urologist or Oncologist.
If you are in your 50’s or younger and diagnosed with prostate cancer, take the time to research the disease, before you pull the trigger on surgery or radiation treatment. Again: Considerations to the side effects need to be thought out. There’s many. If you’re married or have a partner, you really need to have that awkward discussion with them too. If your cancer is low grade, Gleason score of 6, many of the leading urologist recommend keeping your prostate as long as you safely can through active surveillance, avoiding the side effects as long as possible. Have genetic testing if you can. Ultimately, the decision lies with you and your urologist or oncologist. But don’t panic and make a snap decision, unless your cancer is high grade. You’ll have a good idea where you stand from the biopsy/pathology report.
What I’m saying is this. If you have a low grade, low volume cancer, which most are, Gleason score of 6, you may not need treatment for many years. That’s a big deal to a happy couple with an active sex life. Psychologically, to a man that loses his manhood, it can be devastating. And incontinence is almost mandatory after surgery. Counseling is often times recommended.
But, if you do need to have surgery, make sure your urologist/oncologist know how you feel about erectile dysfunction, and that they practice nerve sparing surgery. Most do. Still, make your intentions clear on ED. Don’t let a doctor make that decision for you. If the nerves are spared, and sometimes they can be, there’s a good chance the little blue pill will get you where you want to be. Without the nerves, well, if your under 60 they can grow back in two years. Your urologist will advise you on what to expect.
Reality is, saving a life is what’s import in the final analysis. But, the side effects have to be considered by all concerned.
Waiting for my Decipher results to come back created a lot of anxiety to me. My fear was, that the cancer was spreading outside the prostate, based on something they saw in the MRI, that perhaps the radiologist missed.
On Oct 3rd, 2016, I got my Decipher results back. Better news than any of us expected. My Decipher score was 0.18, Genomic Low Risk Cancer. Chance of spreading in 5 years is 0.8%, 10 year prostate specific mortality is 1.5%. Lowest risk is 0.00, while 0.45 is average, so at 0.18, I’m in a good place to be with this cancer.
Interpretation as written on the report is as follows: Among men with a low risk Decipher prostate cancer classifier score, clinical studies have shown that this cancer has a favorable prognosis. Men with a low risk Decipher score, may be suitable candidates for active surveillance and may have excellent outcomes even when treated with local therapy alone.
The Decipher test was the deciding factor on my treatment. What looked to be a cut and dry treatment plan for my significant cancer, at some point, surgery or radiation, was only true until all the facts were in. Genetic testing saved me a lot of misery, as I was listed at high risk for cancer return after surgery. As you’ve read, I no longer need it, and may never need it. Of course, nothing is certain with any cancer. The doctor tries to treat or cure it, and we do our bit, and what we can to live and fight another day.
On the 14th of Dec, I received my latest PSA score. It had now dropped to 4.1. Incredible news. My PSA is still trending down, which means the cancer is a little less active than it was last time I had it tested in mid August.
It’s now Jan 13th, 2017, and I’m still on active surveillance and doing well. My next PSA is on April 3rd, 2017.
If you have prostate cancer, see if there is a support group in your area. I go to Wichita Prostate Cancer Support Group, and it offers me a breath of fresh air. Some folks are emotionally struggling with the disease, some are fighting metastasis (the cancer has spread), some have had radiation, some surgery, and then there’s me, on active surveillance. And we all have our own individual story to tell. And that’s what makes the group so important and so special. We emotionally support each other as best we can.
It reminds me of being in a war zone and we’re in a battle for our lives. We all have been wounded, some worse than others. Some have been hit by a flame thrower and had it (cancer) burnt out, some have been pierced by the blade and the bullet (cancer) removed, some have life altering injuries requiring continual treatment, and some are okay. But we’re all on guard duty, ever so vigilant, watching and waiting. And we all have one thing in common, “we are all survivors” of one of mans greatest adversaries.
When I first moved to Florida many years ago, the expression “Cone of Uncertainty” caught my attention. During hurricane season, it refers to the cone-shaped path that a storm might potentially follow at any given time. In other words, the weather forecasters can’t really pinpoint when or where it might land.
Turns out, that’s also a way to describe how we grieve.
Those familiar with Elizabeth Kubler-Ross know that she divides the process of grief into five stages – denial, anger, bargaining, depression and finally acceptance. To that neat package, I say, “If only it were so simple.” Imagine being able to identify that you’re angry with only two more stages to go, or feeling depressed, but relieved that acceptance is just around the corner. Unfortunately, it’s not that linear. Grief will pinch your heart months or years later walking into the hardware store and smelling pipe tobacco, or driving in the car listening to the radio and hearing a parent’s favorite tune. It is not always loud or obvious, and surprisingly not a constant.
Sometimes deep sadness is coupled with a mix of other emotions. If a parent was suffering you feel at peace knowing their pain is gone. You may be relieved that the stress and challenges of caregiving are at an end, yet at the same time feel unmoored because the concentration and energy you devoted to this job are no longer required. For caregivers in particular, grief can sometimes seem insurmountable for this very reason.
In times of great loss, regret can often keep us stuck. The death of a parent is the death of hope. You may have longed for a different relationship with them. One in which you said or heard, “I love you,” or “thank you,” more often. Our parents also tend to be the keepers of family history and with their deaths we lose our connection to the past.
Guilt is another difficult emotion to overcome. You wonder if you did enough or should have done things differently. Harsh words were spoken and apologies are too late. Now is the time to remember you’re only human. Being the perfect child is just as unrealistic as being the perfect caregiver. Stop judging yourself. Instead create something positive out the negative. Maybe your father liked his cats more than his kids. Make a donation to The Humane Society to honor his memory. Maybe you wished your mother had spent more time with you as a child. Look into becoming a Big Brother or Big Sister or volunteer as a reader to kids at the local elementary school. I’m not suggesting you leap into anything immediately, but there are ways of softening the guilt and regret that attach themselves to the death of a parent.
Keep in mind that the experience of losing a mother or father will be different for every sibling. It depends on your relationship with that parent; what words remained unspoken; and how you viewed your contribution to their well-being, not just at the end, but throughout their lives.
Anniversaries of a death or certain holidays can be tough. A year after my Dad died, I raised a glass of wine, played Puccini’s Madame Butterfly (our favorite opera) and said, “Daddeo, wherever you are, I hope it’s interesting.” He was fond of telling me that heaven seemed like a very boring place. On Mother’s Day, I do all the things my mother loved to do – thrift shopping, listening to Barbara Streisand CD’s in the car, eating lunch at Too Jay’s, then I come home and tell her ashes all about it.
If you don’t want to be alone, plan ahead to get together with people who will be emotionally available for you. Just like everyone grieves differently, your friends, family and co-workers will support you in different ways. Not everyone can be a good listener when you need to talk through the grief. Some people are better with concrete tasks like bringing over dinner or taking care of a chore you’ve been putting off.
Midway through the experience of attending to both my parents, what concerned me was something that often occurs with caregivers. Our identities merge with the task of caring both physically and emotionally for an aging parent and at some point the question arises – “Who will we be when the caregiving ends?” You might discover this type of service is something you’re really good at and you want to do more. For someone else, the idea of being responsible for another living creature, even if it’s just a pet, is way too much. The point is to be gentle with yourself, no matter what you feel.
Keep in mind, there’s no set timetable for grieving and no right way to do it. Give yourself permission to experience moments of joy amidst the mourning. It does occur. Don’t try to be all things to all people. If that means a moratorium on helping others deal with the loss, so be it. If you need help, ask for it – from clergy, from friends, a support group or a grief counselor.
Grief, which is so often muddied with guilt, regret and anger, can be exhausting. Doing what we can to make things right with our parents before it’s too late, opens us to the possibility of experiencing what Mary Pipher, psychologist and author, refers to as “good, clean sorrow.” It’s certainly something to hope for.
Caregiving is a difficult role. It’s filled with unexpected challenges, as well as physical and emotional turmoil that can lead to poor health. When you’re the primary caregiver to an aging loved one, their wellbeing is at the top of your priority list. However, taking some time for respite care can help you stay healthy too, so you can continue to provide quality care for a loved one at home.
Here are a few respite care services that can support you in your role:
In-Home Respite Care
In-home respite care is one options that families utilize to support aging loved ones who have decided to age in place. There are many in-home care agencies that offer trained caregivers to families for a few hours or a few days a week, depending on the elder’s needs. Most agencies have a base rate between $25 and $45 per hour.
These caregivers can provide companionship, physical therapy supervision, meal preparation, transportation, and help with activities of daily living such as bathing and dressing. Everyone needs a break from time to time, and hiring in-home care is a great way to get the support your loved one needs so you can take some time to focus on other responsibilities.
Community-Based Respite Care
Many senior housing communities also offer short-term respite stays ranging from a few days to a few weeks long. These short-term stays are great for families who need a break from their caregiving duties, are going away on vacation, or are otherwise unable to provide the needed care. Respite stays generally range from $150 to $300 per day.
During these short-term stays, communities provide assistance with activities of daily living, support with medication management, and provide nutritious meals to residents at no extra cost. To aging loved ones, a respite stay will feel like a luxury vacation in a welcoming community of peers. To family caregivers, a respite stay can provide peace of mind so that they can take time off to focus on their own health and wellbeing.
A variety of organizations also provide respite grants for families of aging loved ones to utilize when they need some help in their caregiving role. The Alzheimer’s Association, the National Family Caregiver Support Program, and the Alzheimer’s Foundation of America all offer funding to families in need of in-home or community-based respite care. Grants often range from $500-$1000, and can usually cover up to a week of respite care. Many senior housing communities will work with families and organizations in order to schedule respite stays that fit within the grant budget.
Online Support Groups
If you decide that you’d like to keep caring for an aging loved one, but just need some support from others going through the same experience, online support groups can be extremely beneficial. Whether you join a Facebook group for caregivers or a forum on The Caregiver Space, being part of a community can help you feel supported in both good times and bad.
These are just a few examples of respite services that can serve your family as you work tirelessly to provide care for aging loved ones at home. Even a few days of respite can make a world of difference when it comes to taking on a caregiving role. So if you start noticing the signs of caregiver burnout such as fatigue, stress or anxiety, consider respite care to help you get back on track.
Jacqueline Hatch is the Content Manager atSeniorly, a company that provides free resources for families in need of senior care services. Her goal is to produce educational articles for Seniorly’sResource Centerto help families navigate the complicated world of aging options.
Rini Kramer-Carter has tried everything to pull herself out of her dark emotional hole: individual therapy, support groups, tai chi and numerous antidepressants.
The 73-year-old musician rattles off the list: Prozac, Cymbalta, Lexapro.
“I’ve been on a bunch,” she said. “I still cry all the time.”
She has what’s known as “treatment-resistant depression.” It’s commonly defined as depression that doesn’t respond to two different medications when taken one after the other, at the right dose and for the right amount of time.
Nearly 16 million adults have major depression, and up to a third do not respond to treatment. The disease afflicts people of all ages, but experts say that as many as half of older adults don’t get better with standard treatment.
Mental health experts expect treatment-resistant depression to become more widespread as baby boomers age. Boomers already have been identified as having higher rates of depression than previous generations, and over time their depression may no longer respond to medication.
“We are seeing treatment-resistant depression more, and we are recognizing it more,” said Helen Lavretsky, a geriatric psychiatrist at UCLA. “And in older adults, the answer to understanding what it is and what to do about it is more complicated than in younger adults.”
The consequences among older adults can be devastating. Persistent depression can raise the risk of early death and suicide, expedite memory decline and lead to a loss of independence.
The phenomenon isn’t well studied, but psychiatrists believe there are several reasons why depression in older adults may not respond to treatment. For one thing, if a person has been depressed and taken different medications for a long time, it can diminish their effectiveness. Patients also may neglect to take their medication as prescribed, because they have memory problems or they believe they no longer need it.
“Sometimes people say, ‘I’m better. I don’t need this,’ and stop the medicine,” said Anthony P. Weiner, who directs outpatient geriatric psychiatry at Massachusetts General Hospital. “Then the symptoms recur … and if the person goes back on the medicine, it may not be fully effective.”
Seniors are also more likely to have chronic medical illnesses, which raises the risk of depression. Their illnesses may make it more difficult for them to recover from depression. And it can mask whether antidepressants are working, because symptoms of chronic illness can be mistaken for depression — and vice versa.
Poverty, isolation, pain, grief over the loss of a spouse, or being a caregiver can also lead to or intensify a senior’s depression. And no matter what medication the patients take, Lavretsky noted, those external factors don’t go away.
“Either they change their perspective or they change their circumstances, or the depression just persists,” she said.
Antidepressants can help seniors gain some perspective. But Lavretsky and others agree that even if the medications are effective, they shouldn’t be used in isolation. “It’s an emotional experience,” Weiner said. “The whole answer isn’t just, ‘Oh, here take a pill.’ There is such a central role for psychotherapy.”
Kramer-Carter, who speaks slowly and hugs everyone she meets, has felt depressed for as long as she can remember. As a young adult, she worked as a secretary and a proofreader but got fired more than once because she had trouble getting out of bed and making it to work on time. She went to the emergency room many times and in her 30s, she was diagnosed with depression.
Now, she spends a few days each week driving her husband, Eugene Carter, to medical appointments. When she feels up to it, she volunteers delivering food to poor families.
Kramer-Carter checks all the boxes for being at high-risk of treatment-resistant depression. She is a long-time caregiver, first for her parents and now for her husband, a stroke survivor with short-term memory problems. Her own list of health problems is long: diabetes, high blood pressure, arthritis, fibromyalgia and gout.
“Who wants to be aching all the time?” she said.
Money problems don’t help either. The couple depends financially on Social Security. If she had more money, she said she would go to the theater or see live concerts. She misses both.
“We wouldn’t be so stuck,” she said. As it is, they spend everything on food, rent and other bills.
“It’s a constant struggle,” she said. “You have to borrow from Peter to pay Paul.”
Despite the prevalence of treatment-resistant depression, few resources exist to help psychiatrists make treatment decisions. Clinical trials have been scant, and there are no universally accepted protocols for the condition. The risks and benefits of different medications for older adults are largely unknown.
Given a shortage of geriatric psychiatrists, decisions on treatment are often left to primary care providers, who may not have relevant training or might be reluctant to take on such complicated care.
Doctors with patients who don’t respond to traditional therapies frequently make ad hoc decisions about whether to change the dosage, add a medication or switch to a new one.
“The clinicians use their best experience and trial and error,” said Evelyn Whitlock, chief science officer at the Patient-Centered Outcomes Research Institute. “They try something, and if it doesn’t work, they try something else.”
Trial and error is not ideal, she said. Many of these people have been living with depression for so many years, and providers need to be able to provide them with effective treatment.
In an effort to produce better medical outcomes for people with treatment-resistant depression, the Patient-Centered Outcomes Research Institute announced in July that it was funding three major studies that will test different approaches to the illness. The goal of the research is to produce tangible evidence that can be used immediately to help patients and their doctors make more informed treatment decisions.
The Washington, D.C. nonprofit, which finances health research, earmarked $40 million for the five-year studies, which it expects to begin this fall. They will include more than 2,500 patients at sites in California, Ohio, New York, Texas, Pennsylvania and elsewhere.
One of the studies will examine electroconvulsive therapy — its impact on quality of life and its potential for relieving the symptoms. Another will compare the effectiveness and safety of three strategies — using magnetic fields to stimulate nerve cells in the brain, adding an antipsychotic medication or switching to a specific antidepressant. The research will assess how these approaches affect the patients’ ability to function at home and work.
The third and largest study, with about 1,500 patients, will focus specifically on older adults, testing different drugs and studying how aging affects the risk and benefits of antidepressants. UCLA, where Kramer-Carter is being treated, is part of the third study, which will weigh life circumstances and disabilities in addition to depression.
The grants represent an “unprecedented opportunity to look at this population,” Lavretsky said.
“It will be a comprehensive look at the condition, why it happens and what are the ways of alleviating suffering,” she said. “Are there some similarities among all people with treatment-resistant depression? I suspect we will find some.”
On a recent afternoon, Rini Kramer-Carter visited Lavretsky at UCLA. She said the only time she truly escapes her sadness is when she plays percussion along with other musicians. But she hasn’t been playing lately, and she has been sleeping up to 20 hours a day.
“If I can stay in bed all day, that’s what I do,” she said.
Sometimes she watches TV comedies to try to dissipate her black moods.
Kramer-Carter said she learned about Lavretsky after seeing a newspaper ad for another research study, of a drug typically used to treat early-stage dementia. During their appointment, Lavretsky went over a list of questions included in the study. “On a scale of zero to 10, where do you place yourself in terms of depression?” the doctor asked her. Nine, she responded.
She told Lavretsky she sometimes felt restless and anxious, but not suicidal.
“Do you feel full of energy?” Lavretsky asked.
“Do I look like I am full of energy?” she responded with a sigh.
Lavretsky told her that no pill will completely fix her problems, but medication might give her more energy and the ability to cope. Kramer-Carter said she knows a drug won’t produce any miracles. She just wants some relief.
“I just want to be able to live my life,” she said.