The other day I was in an ER far from home. The woman in charge of triage was refusing to move forward with triage because we didn’t have insurance they’d accept.
The fact that we had insurance and had even gotten pre-approval to go to the ER wasn’t enough — she wanted us to call them back and get paperwork faxed to her. The instructions we’d gotten to pay out of pocket and submit the invoice for reimbursement meant nothing to her. She wanted a fax. But she couldn’t find the fax number.
Finally, I asked, “Is there another ER we could go to that will accept payment in cash?”
Suddenly, we could pay in cash. There was a clear procedure in place and it was no problem.
The next day, I saw the same advice in a comment here:
If I got, “Sorry, I can’t help you.” I asked who could. – Diane Bobinski
When you’re talking in circles — or worse yet, being told ‘no’ over and over again — ask who can help.
It seems obvious, but it’s so easy to forget to do in the moment.
Plenty of times the person saying “that’s not my job” knows whose job it is to help you. But so often they don’t offer up any information you don’t ask for.
Our private Facebook groups are pretty active, so you might find they take over your Facebook news feed.
Don’t worry, there’s an easy solution.
Find a post from the group that’s taking over your news feed and click on the little triangle in the upper right corner to reveal a menu.
By “unfollowing” a group, you’re still a member of the group, but posts from that group won’t appear in the news feed anymore.
In order to participate in the group conversations, you can add a shortcut. Go to the group you want to create a shortcut for. In the upper right there’s a button with “…” that will reveal a menu. Choose “pin to shortcuts.”
Now a shortcut for the group appears on the left side of your Facebook account.
When there are new posts to your group, a number will appear next to it. This way you can stay a part of the conversation without getting constant notifications or filling up your Facebook news feed!
A friend of mine in Brussels casually mentioned how she’d wanted to take a sabbatical, but the new government had changed the program. She’d hoped to take some time off to work on personal projects, but she worried about what would happen to people who relied on a sabbatical to take care of relatives. What would they do now that the program provided no financial support?
Her comment really piqued my interest — what programs are available to family caregivers in Belgium?
Belgium’s time credit system
In Belgium employees were able to take a tijdskrediet / crédit-temps or ‘time credit’ while collecting most of their regular salary. To be eligible they had to have worked full-time for two years and at least one full year for their current employer. Employees can take up to a full year off or can work half-time for slightly longer than a year. They can also work 80% of the time for up to 5 years, or longer if the employer agrees to it. At the end they would be able to get their job back or return to full-time work. Employees could do this for a maximum of three years during their working life.
The government would cover most of the cost, with the employer covering a ‘supplement.’ The employer cannot deny an employee’s request for a sabbatical without a serious business reason. In a country where the social safety net makes it expensive and difficult to reduce the workforce, sabbaticals can be a way for a company to reduce their expenses while encouraging their employees to take care of their families and pursue interests. This was also seen as a way to get people back into the workforce, as it increased the number of available temporary job opportunities.
Encouraging work/life balance
Employees who are ill, have a new child, or have an ill relative are all encouraged to take a sabbatical. The government has introduced tax incentives to encourage people to outsource household tasks, like cleaning, cooking, and childcare. This is intended to reduce stress on working women and turn unpaid work into paid career opportunities. Overtime pay must be paid to people who work over 39 hours per week. Still, many more women work part-time than men in Belgium.
The history of time credits
The time credit system was introduced in 1985, as a way to reduce unemployment and address work/life balance. Employees could interrupt their careers for family obligations, education, personal projects, or any reason at all. Employers were required to hire an unemployed person during the sabbatical, bringing many people back into the workforce.
In 2002 the law was changed so employers were no longer required to hire an unemployed person to fill the position during a sabbatical. Trade unions have generally supported the sabbatical system as long as employees were taking work reductions voluntarily.
The option to work 80% of the time has become very popular among men and women over the age of 50, who are very likely to be providing support for their own parents as well as grandchildren.
In January of 2015 the time credit system was changed so that the National Employment Office no longer covered any of the employee’s salary. Employees can still take time off for a sabbatical, but they have to do so without pay. Older persons wishing to reduce their hours indefinitely to ease into retirement must now be 60 years old.
Family caregivers in Flemish Belgium are provided with allowances. The amount of financial support and eligibility criteria are different for each region. There’s also a small payment intended to cover out-of-pocket expenses, which averages 30 euros per month. Flemish Care Insurance is mandatory for all residents. In most cases, cash benefits provided are reduced if the household income is over a certain amount.
Anecdotally, because many people providing care don’t identify as caregivers, they don’t apply for financial support designed to help caregivers.
In addition to sabbaticals, family caregivers have access to:
Palliative care leave for terminally ill parents (2 months + 1 month extension, with 750 euro/month)
Medical assistance leave (up to 12 months, taken in 1-3 month increments, with 750 euro/month)
Emergency leave (10-45 days/year)
Caregivers in Belgium have access to training through nonprofit organizations. There is no centralized service for respite care and counseling, although these are available to most people. Like the US, most services are designed based on the location and condition of the person receiving care.
Because 99% of the population is covered by compulsory health insurance, patients face limited health care expenses. However, these expenses can still be a serious burden on families. Home care is covered for low-income families and on a per-diem basis.
Disabled people in Belgium are given a dependence allowance and a personal assistance budget, which are meant to assist with caregiving expenses. However, these funds are used at the discretion of the care recipient. Care recipients are also eligible for an income replacement payment and other allocations.
Like caregivers in the US and Canada, caregivers in Belgium are hesitant to use the respite care available to them because of feelings of guilt, objections from the care recipient, and fears of loss of privacy.
Social Entitlement credits
Belgium worked to create a legal definition of family caregiving from 2008, passing the law in May 2014. The goal is to provide tax benefits for caregivers and social security credits for time spent providing care. This could also provide family caregivers with specific rights and workplace protections.
Things have changed a lot in the US during my grandmother’s lifetime.
My grandmother retired before I was born. Usually the people I remember as having been “old” during my childhood turn out to have been slightly older than I am now. Not so with my last remaining grandparent, who looks quite old in photos where my parents are younger than I am.
I used to tag along with my dad to her house multiple times a week, making sure everything was taken care of. She could live alone, but she needed help with little things. She’s never been a fan of children and I can’t imagine I was much help, so I’m sure no one really cared when I stopped going.
Why did I suddenly refuse to visit my grandmother? I was so angry that she knew who my sister was (the pretty one) and had not the slightest clue who I was (the nerdy one), even though my sister visited her only for required family occasions. The first time she forgot who I was, everyone brushed it off. I boycotted grandma.
It was nearly 20 years before anyone diagnosed her with dementia. The amount of help she required each week grew gradually, until it was clear she needed my father to move in with her.
When my grandmother was working age, it was unusual for a woman to work. The elderly and infirm were expected to be cared for by the wives who looked after the children. The daughters were expected to help.
Now only the wealthy can afford to survive on a single salary. Even those who could afford to have one spouse stay home often have ambitions beyond their homes. As the pay structure and societal expectations shifted, the rest of the world failed to shift to accommodate the needs of childcare and eldercare.
When Social Security was unveiled, the life expectancy of an American was 62 and payouts began at 65. Today, most people live to see 80. No wonder the system is always on the verge of collapse — it wasn’t designed for this.
More and more people rely on Medicare while fewer people pay into the system.
With many parents requiring care starting in their 60s, most people will spend more years providing eldercare than childcare. Children spend hours a day at school, elders require 24/7 care with little financial support.
They’re expected to support themselves, save for retirement, put their kids through college, and support their parents. People are collapsing under the weight of these unreasonable requirements.
As soon as I was living on my own, my parents eldercare responsibilities intensified. And now they’re providing childcare for their grandkids while still taking care of their own parents. So much for an empty nest. While the other elders in our family have passed away, grandma still needs 24/7 care.
My parents have been fortunate: they’ve made it through the financial and emotional gauntlet of eldercare with their own lives largely intact. They had jobs that provided the flexibility to provide eldercare, often for multiple people at a time, without having to give up an income. So many haven’t.
Our lives have changed. It’s time our system for eldercare changes, too.
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.
I’m really comfortable talking about caregiving and I love my family, but the thought of sitting down with them all at once to discuss it stresses me out.
Would you want your entire extended family to gather together so they could plan out your impending death? That sounds awful. Let’s save family gatherings for fun stuff.
Start the conversation
You don’t need a special occasion to talk about aging.
The sooner you start talking about aging, the better it is for everyone. The longer the conversation is delayed, the more it’s going to feel like a big, scary problem. Aging isn’t a problem. Enough of us need help, even temporarily, long before we’re getting AARP in the mail that it’s good to have these discussions with everyone we care about.
First, write down all the questions you have for your parents. Maybe you want to ask them:
What will you do if you need help every day?
How much can your family help you?
What would you do if you couldn’t stay in your own home?
How can you adapt your home to make it safer?
How can we pay for medical care?
How can we pay for home health care?
How can we pay for nursing care?
What’s most important to you if you become very ill?
Who do you want to make decisions for you if necessary?
Then, answer all of these questions for yourself. What would you want if you were ill or injured?
Look over your insurance policies, your medical coverage, your savings, and your bills. Fill out a living will. Think about what your family would do without you.
Then think about how you should approach these topics with your parents.
Perhaps the easiest way to start the conversation is to talk about yourself. I’m a millennial, but I’ve given both of my parents copies of my living will. Calling my parents to discuss insurance plans elicits information on their own plans and concerns. My debates on whether remodeling my bathroom to conform with universal design surely get them to look at their own bathrooms with a critical eye.
Know what matters
The idea isn’t to get ready for your parents to die, it’s about knowing what they value the most. What pieces of their identity are most crucial? What gives their life meaning? These are the sorts of things parents are probably happy to talk about.
The stronger your relationship and the better you know each other, the easier it is to talk about what they’d want their lives to be like if they were to be seriously ill or disabled.
These aren’t things most people think about. Sometimes people can’t answer because they have no idea what they want. You have to talk it through a couple times before you can stick a medical directive in front of someone and expect them to fill it out.
These conversations are so important. My mother hasn’t written out a living will, but we’ve talked about enough things over the years that I feel confident that if something happened, I could make the choice she’d want me to make for her.
Plan from the beginning
We spend so much time planning our retirement, but people will refuse to talk about picking a home where they can age in place or sketching out a long-term care plan. Not talking about these things doesn’t make them go away, it just makes it scarier when it does happen.
When you evaluate a new place to live, think about how you’d be able to navigate it on crutches, with a walker, or in a wheelchair. When looking for a new job, think about the medical and disability coverage. How much is enough to save for retirement care? Ask your parents how they navigated these decisions as each of them comes up.
There are so many great articles, podcasts, books, and movies to prompt deep conversations about what matters to someone. We talk about what we’d do if we won the lottery, we can learn to talk about things that are more likely the same way.
Then you’re talking about this amazing book you just read, not planning their demise.
If you’re really ready to get creative, plenty of historic cemeteries offer tours. Quite a few of them are gorgeous places with fascinating stories. If your family shares a certain type of humor, bringing it up while standing in a crypt is one way to make the conversation unavoidable.
When you’re caring for someone who verbally abusive or requires every moment of your attention, it’s incredibly emotionally draining. It’s unrealistic to try to not be offended or learn to live without alone time. It’s realistic to learn how to recover emotionally and regain your balance.
Assess the situation
Take a moment to think of how you really feel. If you’re upset, what does ‘upset’ break down to? Disappointment? Frustration? Longing for appreciation?
Think about how you feel and why you feel that way and you might just be able to make the situation a little easier to improve.
Reframe the situation
People usually aren’t being inconsiderate because of something about you, it’s usually about them. Someone snaps at you because they’re over-tired. Someone is late because they overslept. Someone lets you down because they’re caught up in their own needs.
Peoples actions aren’t always a reflection of how they really care about you or value your help.
We tend to overestimate people’s physical needs. It’s okay to push someone to try to be more self-sufficient — or a little patient — if it’s not going to put them in danger.
Agreeing to do things you can’t possibly do or taking on more than you can handle isn’t necessarily better than saying “no” with love.
Accept your own abilities
No matter how hard you try, you’ll screw up. You’ll let people down. You’ll make mistakes. You’ll hurt people’s feelings. That doesn’t mean you’re a bad person, it just means your a person.
When you start to feel guilty about something, ask yourself if it’s really something you were responsible for. It’s okay to feel sad about how things turned out, but there’s no need to take on the blame.
Even if you were responsible for something bad that happened, remember that we all do things we regret. Think about what lessons you can learn and forgive yourself.
There’s no need to go it alone. We all feel alone sometimes, but there are things we can do to lessen that. Connect with other caregivers, online or in person, and reach out to your social network.
You deserve support, encouragement, and understanding.
Remember why you’re here
Some days you probably want to walk out the door and never come back. But you don’t. No one is really forcing you to stay, as much as it may feel that way. What keeps you there?
Remembering the reasons you have to stay — and reminding yourself that it’s a choice — can help you feel in control of the situation.
Many of our community members have had to quit their jobs or retire early in order to serve as a family caregiver. Many more struggle to juggle caregiving and their career.
Working family caregivers often manage to stay at work by arranging for a flexible schedule, cutting back their hours, switching to a different type of job, or arranging to work from home. Other caregivers find themselves becoming entrepreneurs developing tools and products for other caregivers.
When Rick’s parents couldn’t live independently any longer and needed his support, at first he was able to continue working full time. Eventually, he realized this wasn’t going to work long-term, especially as their health declined there were more jobs – outside of his own job – to do and there weren’t enough hours in the day to both work and fulfill his responsibilities to his parents.He felt torn between two important priorities — and he’d need an income in order to support himself and care for his parents.
Being hesitant to share such personal information with his supervisor at work, Rick was nervous to ask about cutting back his hours. There was some inner turmoil, but something had to be done. Luckily, his employer was supportive and agreed to let him work three days a week, so he could devote time to support his parents. Now a number of years after the fact, Rick realizes that, considering the options, an employer is often wiser to work with a current employee needed caregiving time off rather than try to replace that valued employee and go through the time and expense of advertising, screening resumes, interviewing candidates, and training.
A part-time schedule provided Rick increased scheduling flexibility, allowed him to set up his parents’ medical appointments for his days off, and reduced the number of phone calls he was forced to take and/or make at the office on his parent’s behalf. Cutting back his hours made it easier to make work his full priority when he was in the office. Having a little bit less on his plate really reduced the stress he was under, heightened his concentration level, and allowed him to feel more productive and focused. Being able to continue making an income, even if it was reduced, gave him a real peace of mind.
In a way, his time at work became a type of respite. His life may have been all about caregiving at home, but he didn’t talk to his coworkers much about caregiving, allowing him to maintain another side to his identity. As another means of personal escape, Rick also took writing classes during this time. Caregiving can be all consuming, but work and school kept him firmly rooted in the career world and creative fields.
Rick’s dad was able to go to a day program for people with Alzheimer’s. This gave his mom some time for herself. Rick was caring for both of his parents, but his mom was also a caregiver to her husband, despite her illness. It was important to make sure she could relax, sleep, and take care of herself so she wasn’t exhausted by caregiving.
In addition to the day program, Rick used driving services to make sure his parents got safely to appointments when they could manage on their own. Arranging transportation was still time consuming, but it helped him stay at work.
He worked part-time for nearly two years. One huge benefit to working part-time was being able to keep his foot in the door at work. His career wasn’t derailed by a long absence. Continuing on a part-time schedule made it much easier for him to transition back to full-time.
MSNBC news anchor Richard Lui helps take care of his father. The hiccup is that Richard lives in New York and his parents are in San Fancisco!
He’s been splitting his time between the two coasts since his father was diagnosed with Alzheimer’s five years ago. When his dad couldn’t remember his sibling’s names, they knew something was wrong.
Richard sat down with his boss and explained the situation early on. His boss is also a long-distance caregiver, so she understands how important it is for people to be devoted to both our careers and our families. He now serves as a news anchor on the weekends, making diving his time do-able, although certainly not easy.
Even as a long-distance caregiver, Richard feels it’s incredibly important to stay overnight at his parents’ home. He needs to hear the bumps in the night in order to really understand what’s going on — and experience both the difficult and heartwarming moments of caregiving.
His mom doesn’t consider herself a caregiver, although she’s the one who takes care of her husband day in and day out. She’d never ask for help, but Richard is honored to be there for his parents.
Richard’s father was a pastor, his mother a teacher. His father has always been a very loving, happy man. He isn’t always sure who Richard is, but he knows that he loves him. As Alzheimer’s changes his father, Richard feels the core of his father’s identity is being revealed. He views it as a type of rebirth.
While Richard’s strong faith is guiding his family through this journey, he knows the times ahead will be both challenging and beautiful.
So many of our community members are in this situation. Here’s what a few of them have to say…
I was working full-time when he was diagnosed and he ws retired. I was able to continue working for 1 1/2 years, but it became increasingly harder. My employer made me an incredibly generous offer of part-time work from home and I was able to do that until I retired in June 2015. I still wasn’t 65, but made it work. Those 3 years were wonderful because I was still able to get out to work some of the time and keep up my professional relationships and work friendships. – Deb
I have [professional] caregivers during the day, so I can work. – Cathy
I recently returned to work outside of home after being a stay-at-home/work-at-home mom for 10 years. As the caregiver to my partner, the main breadwinner for our family and the one who handles most household and family-related tasks, I often find myself feeling overwhelmed, frustrated, resentful, and hopeless. – Melissa
I feel part wife / part maid/ part cook / and I work part time. – Susan
I work full time at an office. She is on longterm disability and is alone all day. I don’t make much plans without her because time together is precious. – Lesley
I am not only my mother’s primary live-in caregiver, but we also have a paid caregiver from an agency for about 4 hours a day, 3 days a week. My mother has a fixed income and I have only been able to work part-time since she can’t be left alone for very long. – Laurel
I have to do everything plus work full time. – John
I take care of my husband, whose made great strides in the past year, so he needs me less and less. However, it’s still a lot to handle and I’ve had to take a lot of time off of work to take care of him, which has been a financial burden and not great for my career. – Allison
I cared for my parents from 2012 until July 2015. For those years i was going at 90 miles an hour,working taking care of parents and also trying to have a life with my husband. Then after July 2015, everything stopped. I no longer had my full-time job, mother is in the nursing home and dad is gone. All the friends are still working or have not kept in contact. I tried to go back to work and was told I would have to start at minimum wage and without health insurance! I was there for 12 years. – Lorrie
When my husband got hurt I worked a full time job and also tried to take care of him and believe it or not; I did take care of him and I did a very good job of it. My husband was on tube feeding and could not talk or walk, but when he left the hospital he could talk and 6 months after his accident he could also eat. Yes, we are battling new problems now, but he and I make it together. – Sylvia
I work full-time and through the Advantage Care program, my husband has a bath aide that comes to assist him Monday-Friday. come home from work expecting a,b,& c to be completed and most times only a is done. It is very frustrating for me but my husband and I can never come to agreement about it. – Tina
I have always had to work to support us so I have had specialized day cares, day programs or sometimes in-home staff to manage care her while I work. After work, the real work begins. The doors close on me and I become Super-Mom, Legal Guardian, Psychiatric Nurse, chief researcher, housekeeper, cook, personal care attendant, program manager, organizer. There is no day off, no outings, no friends stopping by. I don’t ever get sick leave and use vacation time to keep my income at a manageable level when I spend too much time at her doctor’s appointments and hunting resources. It’s an absolute grind. I work strange hours, take work home, work Saturdays. Whatever it takes not to get fired. – Cynthia
I care for my husband who has had two TBI’s. He is totally dependent on me for everything. I am lucky enough to work a full time job from home while taking care of him. I rarely can leave my home as it is difficult taking my husband places for many reasons and I cannot leave him alone because of his cognitive deficits. – Barbara
I work full time, care for my sister three nights per week, and manage all of the aspects of her life the rest of the time. – Wendy
I do my best trying to hold this whole thing together, but it seems to be spinning out of control with no end in sight. I do have two employees that stay with my wife so I can work, my mother helps out as well. My wife suffered severe brain injury. Sometimes I relate my situation to the movie ground hog day. Each day we start over: I answer the same questions again, I go over the normal routine things that have to done every day. I think my wife no longer comprehends time. My daughter has started college and is no longer here regularly. I always was the working man that could handle all the load put on me. There is no break from this load and I am getting tired. – Keith
I cannot work the hours I once did because I have to care for my wife. She has a type of cancer that comes back, often fatally. I read the internet and see that she probably has not a lot of time. Of course, her doctor is silent. If I am to be her caregiver (there is no one else) I think I must give up my business. So I have to decide when. If I put my practice up for sale soon, my wife will be very upset. – Peter
Some comments have been lightly edited for clarity
Generally to be your dependent, you must provide at least half of their financial support and they need to be either related to you or have lived with you for a full year.
If several family members provide half or more of the support, you must choose which family member will claim them as a dependent. You’ll need to file a mutual support declaration, form 2120. A person can only be claimed as a dependent by a single tax payer.
Not sure if the person you care for is a dependent in the eyes of the IRS? Find out here.
Payments your caree makes to you
If you take care of a family member and they give you money to help with household expenses, you don’t need to pay taxes on this. This is not considered income by the IRS. It does, however, count as support in determining if your family member is a dependent for tax purposes.
If you cash a family member’s social security benefits and use them to pay for their care, you don’t pay income tax on them. It’s still considered their income.
Medical and dental deductions
If you itemize your tax deductions on Schedule A, you can deduct medical expenses for you, your spouse, and your dependents.
In order for medical expenses to be tax deductible, they have to total more than 10% of your adjusted gross income (AGI). If you or your spouse is 65+, they have to total more than 7.5% of your AGI.
How much can you deduct
You can only deduct expenses over the allowable amount. If you’re 32, your AGI is $35,000, and you have $7,510 in medical expenses, here’s how the math would look:
35,000 x .10 = D 7,510 – D = medical expense deduction
35,000 x .10 = 3,500 7,510 – 3,500 = 4,010
You would be able to deduct $4,010 of medical expenses on your taxes.
What can you deduct?
Payments and co-payments to doctors, dentists, surgeons, chiropractors, psychiatrists, psychologists, and nontraditional medical practitioners
Payments for in-hospital or residential care, including the cost of meals and lodging
Rehabilitation, therapeutic, preventative, and personal care services for people who are chronically ill who need support for ADLs
The cost of eyeglasses, contact lenses, hearing aids, false teeth, crutches, wheelchairs, and guide dogs
Any money paid to your spouse, the parent of the qualifying person, any of your dependents, or anyone under the age of 19 is not eligible.
You cannot claim this tax credit if you’re married filing separately.
If you pay an individual, you may be required to pay social security, Medicare taxes, and unemployment taxes if you are considered a household employer. You cannot claim expenses for anyone you paid ‘under the table.’
Most states allow you to deduct a percentage of your federal tax credit from your state taxes. Check to see if your state provides a tax credit for dependent care.
If they’re not a dependent
Even if someone isn’t considered your dependent, they can still claim their own medical expenses on their tax return.
Elderly and disabled tax credit
This credit is for people who are elderly or disabled and file their own taxes (not as your dependent). If someone 65+ or who is disabled (and any age) has an AGI lower than the required threshold, they can get the elderly and disabled tax credit. This goes on Schedule R.
Few people expect helping a family member to require them to become a bit of a tax expert, but many of us find ourselves navigating major financial decisions.
Your real estate attorney or financial advisor may not offer up information about the tax breaks you’re due as a family caregiver. Asking them if you qualify can save you thousands of dollars of taxes you don’t need to pay!
If you’re about to sell your home or the home of a family member because of their health, read this first and talk to your real estate lawyer and accountant.
We also have tips to share on how to get a home ready to sell. Many caregivers find themselves in charge of selling houses that haven’t gotten a face-life in a while and we need to get the best price for it that we can!
Many people are aware of the capital gains tax exclusion on your primary residence. If you’ve lived in your home for 2 out of the 5 years before you sell it, you don’t owe taxes on the first $250k of capital gains. If you’re married, that number jumps to $500k. That means if your home sells for more than what you bought it for, you don’t owe any taxes on the first $250k or $500k of profits.
Any money you spent increasing the value of the home –like an addition or upgrades, but not routine maintenance — counts toward the original price you paid. So, if you bought a home for $100k, spent $25k in renovations, and sold it for $250k, the IRS sees $125k as the price you paid for the home and you get $125k in tax-free profit.
If you own your home with someone you aren’t married to, you can each claim the $250k tax exemption, for a total of $500k, as long as you both qualify.
You can only use this capital gains tax exemption on your primary residence once in any two year period. However, this requirement is waived if you move twice in two years because of a change of employment, health, or other unforeseen circumstances.
This tax exempt status is incredibly important for everyday Americans who own their home. It helps families support themselves in retirement, pay for college, cover major health care expenses, and climb up the economic ladder.
What if you don’t meet the requirements?
There are many reasons why you may buy a home and have to sell it before you’ve lived in it for two full years. The IRS isn’t known for being a caring institution, but it does try to help family caregivers who need to move. That’s why they waive the requirements if you have to move because of a change of employment, health, or other unforeseen circumstances.
The IRS will grant you a reduced tax exclusion for quite a few caregiving related reasons.
You qualify for a reduced capital gains tax exemption if:
You can no longer afford to stay in your home because your caregiving has required you to cut back your hours, quit your job, or resulted in you losing your job.
If you’ve gotten a job transfer or taken a new job to be closer to a loved one who needs support. This generally needs to be more than 50 miles from your old home.
Your home is not suitable for a family member because of their disability.
A family member needs to move in with you for health reasons and your home is not large enough to accommodate them.
If you moved to be closer to a treatment facility for yourself or a family member.
If the climate of the area you lived was not suitable for a family member’s health.
Anyone in your household has passed away.
Anyone in your household has lost their source of income.
You and your spouse get divorced.
You’re forced to move because neighbors object to a family member’s mental or physical disabilities.
A family member requires a service animal and your condo prohibits animals.
A family member, in this case, is your spouse, any children or step-children who live with you, a co-owner of the home, anyone who lives with you, a parent or step-parent, grandparent, grandchild, sibling or step-sibling, your in-laws (including siblings), aunts or uncles, nieces or nephews, and cousins.
If you’re selling a family member’s home for them, they can qualify for a partial capital gains tax exclusion if:
They need to move into a residential care facility for physical or mental health reasons and have lived in their home for one full year.
They have become disabled and their home is not accessible.
Their neighbors object to their mental or physical health issues.
They can no longer afford their home because they’ve lost their income or their income has been reduced.
Someone in their household has passed away.
They’ve gotten divorced and can no longer afford their home.
They require a service animal and their condo prohibits animals.
You’ll want to get a letter from your doctor to support your need to sell the home in case you’re audited.
If the home owner requires residential care
If your spouse or another family member owns the home you live in, they can include any time they were living in a licensed assisted-care facility as part of the two years, as long as they lived in the home for a year in the 5 years before the sale. If your parent buys a home and lives in it for a year before having a health issue that requires you to place them in a nursing home, they can claim the tax exemption as long as you sell the home within 4 years of when they’re moved to residential care.
If your spouse has died
If you’re selling your home because your spouse has passed away, you can claim any period of time your spouse has owned and lived in the home as if you had lived there and owned it, too. So if you were married less than two years ago and moved into a home your new spouse had owned and lived in for more than two years, you can claim the full capital gains tax exclusion when you sell the home.
If you sell the home the year your spouse passed away, you can file your taxes jointly with your deceased spouse and claim the full $500k exclusion. If you wait and sell the home in a future year, you can only claim your $250k exclusion.
What’s the reduced exemption?
The reduced capital gains tax exemption on your primary residence is determined by a formula.
Maximum capital gains tax exclusion multiplied by the number of days divided by 730
The maximum exclusion is either $250k (if you’re single) or $500k (if you’re married).
The number of days is:
the number of days you owned the home and it was your primary residence
the number of days you used the home as your primary residence
the number of days between when you used the capital gains tax exclusion for a prior home sale and the date of the current sale
You use whichever of the three options is the fewest days.
730 is the number of days in two years.
Let’s say you and your spouse bought a home and a year and a half later, your sister-in-law is in an accident and needs your support. You and your spouse decide to sell your home and buy a new home that’s accessible for her needs. You’d be eligible for a partial capital gains tax exclusion. The math would look like this:
500,000 x 547.5 / 730
273,750,000 / 730
In this instance, you won’t owe taxes on the first $375k of proceeds from the sale of your home.
We’re not going to shy away from talking about the issues that affect our lives: health insurance, medical costs, access to treatment, and the lack of support for caregivers. Every time we share articles about these things that we all deal with every day we get angry comments from people who aren’t active members of the community. We’re not going to be silenced by trolls.
Our goal is to support caregivers. Always. That includes asking politicians to support caregivers.
We’re not taking sides because there is no “other side.”
There is no political party in America that is against healthcare or caregiving. Everyone wants their families to be taken care of. It’s human instinct to take care of the people we love.
The community on The Caregiver Space has members who’ve voted differently. It doesn’t matter. We all share the desire to see caregivers supported. We share the desire to support each other. Everyone on this site deserves your support.
No politician in America would look you in the eye and say what you do isn’t important. Everyone agrees that caregiving is vital to keep our families together and our economy functioning. Caregivers play an essential role in America — let’s get the support we need and deserve.
As the oldest child, my mother has been called upon to serve as the executrix for multiple family members. I recently asked her what was involved with executing a will and she was kind enough to write this up for us:
Being named executor of someone’s estate is a daunting task, involving patience, fortitude and responsibility. Talk with the individual about his/her wishes and financial holdings when you are both calm and clear-headed, well BEFORE the final act.The conversation should include funeral arrangements; location of the legal will; where financial docs, passbooks, stock certificates, deeds, etc. are kept; how the contents of the home should be distributed; if the individual has a prepared obituary available.
The legal will should NOT be kept in a safe deposit box.
When the meeting with the funeral home takes place, try to have someone accompany you. Mourners are sometimes moved by guilt and grief in spending more than might be prudent.
Order more death certificates than you think you will need. For each account (bank, life insurance, investments, even EZPass) one must submit a death certificate with a raised seal.
Probate the will. This means bringing the original will and death certificate to the county seat in NJ where the deceased resided. Sometimes satellite offices are set up at local libraries. As a result of this meeting, a surrogate’s letter (sometimes called letter of testamentary) will be generated. When the executor of the will liquidates the deceased’s assets, a death certificate and surrogate’s letter minimally must be produced.
Regarding the deceased’s checking account, it would be optimal if the deceased and executor have a joint account. Bills must be paid for the deceased while the estate is being executed, which sometimes takes months. If a joint account has not been established, be aware of how long the checking account will be kept viable by the bank before it is closed.
Notify by mail the heirs named in the will.Notify all agencies of the deceased’s holdings (banks, investment companies, life insurance, pension offices, etc) of the owner’s death. The funeral home will notify the Social Security office automatically.
Keep careful records of all financial transactions while liquidating the deceased’s holdings. Include detailed expenditures and deposits in the checkbook.
Should the contents of a home need to be removed, enlist help. Hopefully the deceased will have already distributed special possessions to the special people in his life or included directives in the will. Additionally it is recommended before death to clean and organize the home as much as possible. If multiple visits to charitable drop-off locations (Goodwill, ASPCA for pet bedding, local thrift stores, Elks for medical supplies) is not possible, there are agencies who will empty out a home. Freecycle is another option.
Depending on the estimated value of the estate, enlisting an account or an attorney could be prudent. Although there are numerous resources on-line, in local county offices and in publications, it is often easier to phone a professional for advice.
It is possible that financial holdings should not be liquidated without tax waivers. This is pertinent if the estate’s value is very substantial (check the actual number according to the residence of the deceased). Taxes for the estate must be paid, including federal and state income tax and estate tax. Hopefully the deceased has considered financial planning BEFORE his passing which could include trust funds, gifting and other options.
The caregiving for my Uncle fell upon my mother. He did not want the family to provide hands-on care, so he made sure to have a live-in home health aide. The logistical and legal aspects of care and his estate were still significant.
After his passing, I went with my mother to help clear out the home he’d lived in for over 25 years.
His home was always meticulous, so it was odd to see things that didn’t belong.
The TV captures his personality so well.
Even retirement communities don’t design space for mobility devices.
You can die at home, but rarely in your own bed.
Meticulously kept records of his daily status.
My uncle was a very frugal man. These pencil stubs made us all laugh.
I suspect these ingredients are left from before my Aunt died…when I was in elementary school.
If this, then that is a handy little free tool to automate tasks. This isn’t an app that’s going to take up a bunch of your time — I use IFTTT every day, but I only log into my account once a year or so. Set it and forget it.
Here are some tasks you might find helpful…
Send a message when you’re on your way
If someone wants to know when you’re heading home — or leaving home — this is a handy tool.
Getting caught in the rain can be pretty terrible. Get a notification to your phone to let you know when you’ll need to be prepared. You can also get an email. Want to know if the pollen count or UV index will be high? Consider it done.
What happens if you’re not there when the smoke detector goes off? If you have a Nest, you can make sure you or a neighbor gets the message right away. You can also use Nest to tell you if someone’s home.
IFTTT also works with a whole collection of tools that can help you keep an eye on home when you’re away, but I’ve already promised some of our community members to create a separate round up of monitoring tools.
We’ve all heard stories about people using Facebook to reconnect with long-lost classmates or make new friends. I love Facebook because it helps me keep in touch with friends around the world. Now, when I call someone I haven’t spoken to in a while, I already know a little bit about what’s going on in their lives, so I can ask specific questions and skip the small talk. It’s easy to remain a regular part of someone’s life through a quick comment or share. It also lets me know when to reach out to a friend who might be in need of support. Facebook is a great tool for anyone who wants to maintain relationships with people they don’t get to see on a regular basis. It’s an amazing way to rally support when you need it — people are always online, so you’re really never alone.
Facebook is a great resource, but it can cause trouble if you don’t use it wisely. I’m going to walk you through two important topics: Privacy and Pages.
First, a little terminology:
Newsfeed: The page you see when you first login to Facebook
Profile: Your webpage on Facebook or the webpage of another person
Page: Like a profile, but for organizations or companies
Wall: aka Timeline. The part of a Facebook profile or page that shows content that has been shared in chronological order
Post: When you share an article, an update, a photo, etc. you’re creating a post
Privacy on Facebook
One of the neat things about Facebook is you have a lot of control over what you share with who. Your profile can be public or private. In fact, you can make post only visible to specific people, a list of friends, members of a group you belong to, or friends who went to a certain school. Visit Facebook’s instructions for details on how to control privacy.
Posts to groups will either be public or private, depending on group settings.
All posts on Facebook pages are public.
ublic posts don’t just appear on the profile, group, or page where they’re originally posted. Public Facebook posts can be shared with other profiles, pages, or groups. They can appear in the timelines of people who are connected to the author, the author’s friends, the group, or the page. They can also appear in public search listings, like on Google.
What does it mean if a post is public?
If there’s someone you can think of who shouldn’t see your post, don’t put it on Facebook! This is why we encourage caregivers to vent and share personal experiences in our caregiver forums or our caregiver Facebook group.
A Facebook group is either closed or public. If a group is closed, people need to be approved by a moderator before they can join the group. All posts within the group are visible to group members only. It says ‘Public Group’ or ‘Closed Group’ under the name or the “about” section.
Our Facebook group is a closed group, so anything you write there is only visible to other caregivers in our community.
If a Facebook group is public, anyone can join and all posts are public.
Connecting with Facebook pages
Controlling what shows up in your newsfeed
If you ‘like’ a page on Facebook, you can still choose whether or not you want to see posts from that page in your newsfeed. If you’re ‘following’ a page, you’ll see posts from that page in your newsfeed. If you aren’t following (like in the example below), you won’t see posts from that page in your newsfeed.
Why don’t I see Caregiver Space posts in my news feed?
Facebook can be a bit tricky sometimes. They try to guess what we want to see, but sometimes they get it wrong. Luckily, you can adjust your settings to decide what shows up in your newsfeed.
I’m going to use Donna Thompson’s page to show you how adjusting your settings works. This works for any Facebook page.
If you go to the Facebook page you want to see more of, you’ll notice there’s a little arrow on the “Liked” button. If you hover over that, it’ll show you a few options.
If you click on the little pencil icon to the right of “In your newsfeed” you’ll get these options:
If you set it to “See first”, our posts will almost always show up in your newsfeed. If you choose “default” it will guess based on the algorithm. If you choose “unfollow” it will un-like the page. We post pretty frequently, so if having it set to “see first” is too much, you can also occasionally go to our page and “like” or comment on a few of our posts. That will let Facebook know you want to see more from us.
You can also click on “Notifications” and it’ll give you a notification when we post things.
If you select the “notifications option, it’ll show up in the notification bar, where you see the “13” in the screenshot below:
Where’d my post go?
I get messages from people all the time who’ve posted something to The Caregiver Space’s page and can’t figure out where it went. Most organizations and companies aren’t as eager as we are to have people post on their pages, so Facebook puts posts by anyone who isn’t a page moderator off to the side. In this screenshot, you can see where the ‘Visitor Posts’ are…way, way down at the bottom on the right side.
We want to help caregivers connect, so we’ll usually ‘share’ your posts. However, this makes it very likely that people you know will see your post, even if they don’t ‘like’ our page. This is why we share some messages and not others. We’re not trying to censor you – your original post is still there on our page – but we don’t want to draw attention to something that might be personal.
You meet someone on a Facebook page who is in the same situation as you and take the time to write them a thoughtful message. And then they never respond. What happened?
It’s likely that Facebook has filtered out your message into their ‘other’ inbox. That’s Facebook’s version of a spam folder. That’s where messages end up if you’re not ‘friends’ with someone on Facebook.
Facebook has a lot of options and features which can get a little confusing. Don’t get too worried about it, though — the simplest thing is to just keep your information private.
Prostate cancer is highly treatable. You will hear over and over again that men die with prostate cancer, not of prostate cancer. You might be shocked to discover how many men you know have had prostate cancer or are living with prostate cancer. Prostate cancer is the second most common type of cancer for men worldwide.
1 in 6 American men is diagnosed with prostate cancer during their lifetimes. The vast majority — almost 100% — of men who are diagnosed with prostate cancer are still alive 5 years later.
Every cancer is unique. Your treatment team will figure out how to treat your specific type of cancer.
We don’t get cancer in a vacuum — most prostate cancer patients have other conditions or disabilities to contend with as well. Other health issues can complicate things, changing how you respond to treatment and what treatments are safe for you.
Many people are successfully treated and undergo periodic prostate cancer treatments for the rest of their lives. It’s not uncommon for prostate cancer patients to live for decades with the disease.
Understanding prostate cancer
Diagnosis, indicators, and other tests
Prostate cancer typically doesn’t cause any symptoms in its early stages. Most men will never experience any symptoms of prostate cancer. Those who do may notice:
Frequent or burning urination
Difficulty in having or maintaining an erection
Pain when ejaculating
Blood in urine or semen
Pain or stiffness in the lower back, hips, or upper thighs
Those symptoms could have myriad causes, so your doctor will conduct tests before giving you a diagnosis.
Early diagnosis of prostate cancer does not necessarily reduce the chance of dying from prostate cancer. Small, asymptomatic tumors may be developing so slowly that they effectively present no risk.
Some men with prostate cancer may never know about their cancer before they die of natural causes or from another cause. Detecting non-threatening tumors is considered overdiagnosis and treating these non-threatening tumors is over-treatment. Because diagnosis and treatment all carry risks, over-diagnosis and over-treatment can cause problems for men and their loved ones.
Prostate Specific Antigen Test
The PSA test is a blood test that checks for an antigen that is elevated in men with prostate cancer. The PSA is used both as a diagnostic tool and to monitor the progression of prostate cancer.
There are other benign conditions that can elevate the PSA score, so a high score does not mean you have prostate cancer. Not all men with prostate cancer have elevated PSA levels. Of men who have an elevated PSA score, only 25% of biopsies show cancer. The other 75% of men with elevated PSA levels do not have cancer.
Doctors monitor PSA levels to look for changes in prostate cancer, to see if it’s progressing, and to see if it’s recurred. An elevated PSA level may be the first sign of a prostate cancer relapse. There is no official normal amount of PSA and PSA levels can fluctuate. Types of cancer treatments and UTIs can change PSA levels.
While PSA levels aren’t a foolproof way to diagnose and monitor prostate cancer, the generally strong correlation between PSA levels and prostate cancer make it an important tool.
During a DRE, your doctor will feel your prostate with his or her finger. Doctors are looking for bumps or hard areas. An exam can help determine if cancer is on one side, both sides, or if it’s likely to have spread beyond the prostate. A DRE relies on the subjective impressions of the doctor conducting the exam.
During a TRUS, a small probe about the width of a finger is inserted into the rectum. Ultrasounds use sound waves to create echos and turn them into an image of the inside of your body. A TRUS is usually done at your doctor’s office or an outpatient clinic and only takes about 10 minutes. It feels weird, but shouldn’t be painful. If you do experience any pain, the doctor can numb the area.
A newer alternative to TRUS is a Doppler ultrasound. This measures blood flow within the prostate gland. Prior to a Doppler ultrasound, some doctors will inject you with a contrast agent.
Prostate Cancer Biopsy: The smaller malignant glands (acini) of prostatic adenocarcinoma (upper left) show invasion around and between the larger benign glands (lower right).
During a core needle biopsy, your urologist will insert hollow needles into the prostate to collect tissue samples. A transrectal biopsy goes through the wall of the rectum. A transperineal biopsy goes through the skin between the scrotum and the anus. It’s uncomfortable, but not painful. Your doctor will usually numb the area first and each sample is taken in a fraction of a second. The procedure usually takes about 10 minutes. Your doctor will usually give you antibiotics to take before the procedure to reduce the risk of infection.
Doctors sometimes use an ultrasound to view the prostate while taking tissue samples. They may also use an MRI. This helps the doctors make sure the tissue samples they are collecting are from areas they are concerned about.
Afterward you’ll be sore and may notice blood in your urine or from your rectum. Blood in your semen may persist for weeks after the biopsy.
Tissue from the biopsy is then examined under a microscope for cancer cells. The findings are written up in your pathology report. Because your prostate may contain cancer and the needles may not take a sample of that area of the biopsy, your doctor may do more than one biopsy if he or she is concerned about false-negative results.
The pathology report will say how many samples were taken and how many contained cancer. It’ll say what percentage of each sample was made up of cancer cells. It will also say if the cancer is on one or both sides of your prostate.
Some cells may appear abnormal, but not cancerous. These suspicious areas are called prostatic intraepithelial neoplasia (PIN). Low-grade PIN looks mostly normal, high-grade PIN looks mostly abnormal. When high-grade PIN is found, 1 in 5 men will have cancer somewhere in their prostate, so doctors will conduct another biopsy.
When atypical small acinar proliferation (ASAP) is detected, a few cells look cancerous, but there aren’t enough of them to be certain. Doctors will conduct another biopsy, usually after a few months.
Proliferative inflammatory atrophy(PIA) is when prostate cells are unusually small and there’s inflammation. It’s believed that PIA increases your risk for high-grade PIN or possibly prostate cancer.
If your doctor suspects the cancer may have spread outside your prostate, they’ll use imaging to see. If the likelihood that your cancer has spread is extremely low, they may decide not to put you through the hassle, discomfort, and expense of testing.
Your Gleason score is a simple way to capture your cancer’s clinical stage and grade, using a number between 2 and 10. This is composed of your two Gleason grades. Normal prostate tissue is a grade 1, very abnormal tissue is a 5. Most cancers have a Gleason grade of 3 or higher.
Because prostate cancers have different areas with different grades, grades are assigned for the two areas that make up most of the cancer. The highest Gleason grade is always included, even if it’s just a tiny spot. These grades are then added together to form the Gleason score, or Gleason sum.
A Gleason score of 6 or lower is low-grade, 7 is considered intermediate-grade, and 8 to 10 is high-grade.
Lymph node biopsy
Sometimes a lymph node biopsy is done as a separate procedure, usually when the prostate is going to be left in place but it’s suspected that the cancer might have spread to your lymph nodes. With a laparoscopic biopsy a long tube with a camera and tools are inserted through small incisions in your abdomen. Recovery usually takes only a day or two and you’ll have very small scars. With fine needle aspiration (FNA) a sample of your cells from an enlarged lymph node will be taken using a long needle inserted through your skin. Your skin will be numbed with a local anesthetic. Generally, they’ll keep you in the clinic for a few hours after the procedure, but you should feel back to normal in a day or two.
Computed tomography scan
A CT scan makes cross-sectional images of your body using x-rays. This helps doctors see if the cancer has spread to your lymph nodes, pelvis, or organs.
Prostate cancer is known for spreading to lymph nodes and then the bones. Often it spreads to people’s lower spine. A bone scan is used to see if cancer has spread to your bones, before it causes damage and pain.
You’ll be injected with a small amount of radioactive material, which will settle in damaged areas of your bones. A picture is taken of your skeleton. This can identify suspicious areas, but doctors will use x-rays, CT scans, MRI scans, or biopsies to make a diagnosis.
Magnetic resonance imaging
An MRI scan uses radio waves and magnets to create a images of the soft tissues in your body. They’ll sometimes inject you with a contrast material, gadolinium, to see things clearer. An MRI can provide a clear picture of the prostate and the area around it. Sometimes they’ll insert a probe, an endorectal coil, into your rectum for the scan. You can opt to be sedated if they use the probe, as it can be very uncomfortable.
Deciding on a treatment regimen
Bring a notebook and take detailed notes when discussing treatment options with your medical team. Don’t be shy about asking them to repeat information or spell a term. You may even want to record the conversations, with their permission. Even incredibly smart people with excellent memories find themselves overwhelmed with information. It’s different when it’s your life they’re talking about. The American Cancer Society has a list of questions you should ask your doctor.
Getting a second or third opinion can seem exhausting, but it’s an excellent way to make sure you’re aware of all of your options and making the best choice for you. Your urologist, oncologist, and GP may all provide you with different information about risk factors and recovery time — they each have a different expertise and talking to all of them about the options gives you the most complete picture.
There are many factors to look at when developing a treatment plan. Doctors who have different opinions aren’t necessarily wrong, because there is rarely one right answer when it comes to treatment.
Do you have to act now?
Prostate cancer typically takes years to develop to the point where it’s detectable. You can take the time you need to make a decision about what treatment to pursue, as a few days or weeks is unlikely to change the outcome. It can be very upsetting when patients are told to wait a month for an MRI or for treatment to begin. While the waiting can be incredibly stressful, your treatment team knows it’s safe to not rush into action.
If you are elderly or in ill-health, it may be unlikely that prostate cancer will advance to the point where it’s a danger before you die from something else. In this case, you may be able to safely skip the side-effects of radiation and surgery. Instead, your doctors can make sure cancer symptoms don’t impact your quality of life. Cancer can be viewed as a chronic disease that can be managed.
If you have a slow growing cancer that’s been detected early, you may not need to treat your cancer right away. Some men can live with prostate cancer for decades before deciding to treat it. Some men may never need to treat their prostate cancer. Leaving prostate cancer untreated is not a death sentence or an act of suicide. You can talk to your treatment team about treatment options, side effects, and overtreatment and decide what you need to do to live the life you’d like to live.
When prostate cancer is detected before it has spread, it appears that surgery, external radiation, and brachytherapy all have similar cure rates. Newer types of treatment, like da Vinci robotic surgery and proton beam radiation, appear promising but have much less research and long-term data. This makes comparing treatment options as much art as science.
What’s important to you?
Do you need to act now and go big to fight against cancer? Are you comfortable putting off treatment and seeing your doctor regularly to monitor your cancer?
Do you need to know right away if surgery has removed all of the cancer? Are you comfortable waiting weeks or months to see if radiation works?
Do you want to choose treatment options that are well established and backed up by lots of research? Are you eager to go with the latest and most cutting-edge treatments?
How would you feel if you became incontinent, had bowel problems, or erectile dysfunction?
Do you have a support network in place to help you during recovery from surgery or during treatment? Are you in good enough health to be a candidate for surgery? Do you have other conditions or chronic illnesses that would complicate treatment?
Is the cancer likely to spread and cause you problems before you’d die of old age?
Every treatment carries certain risks and side effects. Even the most effective treatments overall may not be effective for you. Try to figure out which side effect profile you are most comfortable with. Remember that you and your family are the ones who have to live with the outcome of your treatment, not your doctor.
Prostate cancer patients who opt for active treatment will use a combination of therapies.
Common treatment options by stage
Radiation therapy or radical prostatectomy
External beam radiation and brachytherapy, alone or combined
Combinations of external beam radiation, hormone therapy, brachytherapy, and radical prostatectomy
Hormone therapy, sometimes with chemotherapy
Combinations of external beam radiation, brachytherapy, and hormone therapy
Bone metastases treatments
Cancer treatment has come a long way — today’s treatments are more effective and have fewer side effects. However, treatment can still be difficult to endure and have a huge negative impact on your life. Many instances of prostate cancer advance very slowly, meaning the cancer will not spread or grow large enough to impact your life before you die from another cause.
If you have a non-aggressive cancer and it has not spread, many doctors will suggest active surveillance. So long as the cancer does not grow or spread, people can live their lives without the negative impact of cancer treatment. If the cancer eventually grows or spreads, you can work with your treatment team to choose how to respond.
Some prostate cancer tumors are fed by testosterone, so by blocking it you can starve the tumors. This is through reducing hormone levels, also known as androgen deprivation therapy.
Hormone therapy can be used before surgery or radiation to shrink the tumor
Hormone therapy is used when the cancer has spread
Hormone therapy and radiation may be used together to reduce the risk of cancer coming back
Adjuvant hormone therapy reduces the chances of high-risk prostate cancer from coming back after a curative treatment
Hormone inhibitors may be pills, injections, or small implants under the skin. Lupron is one of the most common hormone therapy drugs. These keep the body from making hormone. Needles can be anxiety inducing, but the side effects are generally mild. Some people do have side effects that are serious enough that treatment will be stopped.
Hormone therapy tends to decrease in effectiveness after 2-3 years. In order to account for this, some oncologists will have you start and stop therapy. This is called intermittent androgen deprivation.
With an orchiectomy the testicles are removed through a small cut in the scrotum. Most of the male hormones are made in the testicles. This is an outpatient procedure with low risks of complications. However, after surgery men typically have very little sexual desire and aren’t able to have erections. Many men will have hot flashes afterward, which usually go away quickly, but may persist.
Side effects vary widely based on the hormone treatment used and how your body responds to it. Common side effects include loss of sex drive, impotence, hot flashes, shrinking of the penis and testicles, breast tenderness and growth, thinning bones (osteoporosis), weight gain, loss of muscle mass, and an increased risk of circulation problems.
Radiation, or radiotherapy, uses high-energy x-rays to kill cancer cells. It can be used to shrink tumors, relieve symptoms, and reduce the spread of cancer.
People respond to radiation very differently. Some people find themselves overwhelmed with exhaustion and requiring significant help from family and friends. Other people continue to work through treatment. The fatigue subsides a month or two after treatment ends.
Radiation damages the cancer cells, but it also damages healthy cells nearby. The main short-term side effects of radiation include redding of the skin, diarrhea, and difficulty urinating. It’s not uncommon to see blood in your urine or stool. Some patients develop radiation cystitis. These side effects will usually go away shortly after treatment ends. Some people continue to experience problems with stool leakage even after treatment ends.
Radiation can cause bowel complications. It can also cause erectile dysfunction, although problems tend to develop in the future, rather than immediately, as with surgery to remove the prostate. Radiation can damage the nerves around the prostate, as well as the arteries that carry blood to the penis.
While undergoing treatment for radiation, your oncologist may advise you to not allow children to sit on your lap.
External Beam Radiation
EBR is typically a daily outpatient treatment. If you live near a cancer center, it could mean stopping by for 15 minutes a day. Treatment length can vary, but it’s typically around 7 to 9 weeks. In some cases, patients may need to undergo radiation as an inpatient procedure.
Imaging tests will be done to see where the cancer is, so the beams can be directed there. Radiation techs may mark the spot with ink or in another way. Two types of advanced radiation are 3D-conformal therapy (3D-CRT) and modulated radiation therapy (IMRT). These reduce the damage to nearby tissues. Some oncologists will use proton beam radiation, also called proton therapy, which uses proton beams instead of x-rays. This is thought to reduce damage to nearby tissues, although the evidence is currently inconclusive.
With high dose radiation (HDR), also known as brachytherapy or internal radiation therapy, radioactive material is inserted into your prostate to kill the cancer. Your surgeon will use a transrectal ultrasound, CT scan, or MRI to place the material in the right spot.
With short-term brachytherapy, tubes are inserted into the skin of the perineum and into the prostate. Your doctor will insert radioactive materials into the tubes, usually 3 times a day for 2 days. The treatment takes about 10 minutes each time.
With permanent brachytherapy, also known as seed implants, radioactive pellets are surgically inserted directly into the prostate. Up to 100 seeds, each the size of a grain of rice, are put into the tumor. They’ll give off radiation for weeks or months and over time will stop being radioactive. They typically don’t cause discomfort because the seeds are so small.
While you’re undergoing brachytherapy, you may need to stay away from small children, pregnant women, and pets. Some people experience burning, pain, or diarrhea, but these are relatively rare.
They can also use gel to physically move the prostate away from the other nearby organs, reducing damage to those organs.
This treatment option reduces the likelihood of impotence from alternate treatments, like the prostatectomy. Recovery is easier, compared to having your prostate removed.
High-intensity focused ultrasound
HIFU is relatively new to the US. It kills cancer cells with ultrasonic beams.
Chemotherapy is used to shrink tumors. It may be used on its own or it may be used to shrink tumors so they’re easier to remove with surgery. If the tumor can’t be removed, chemo can slow tumor growth and reduce symptoms, increasing your quality of life and lifespan.
Chemo may come as a pill or through an IV, or a needle in your vein. Since chemo goes through your bloodstream, it can damage cells throughout your body. Your oncologist will try to make the chemo strong enough to kill cancer cells without destroying too many healthy cells. Popular chemotherapies for prostate cancer include docetaxel (Taxotere) and cabazitaxel (Jevtana).
Prostate cancer patients may feel that chemo side effects aren’t as bad as they expect. There are many types of chemo, varying doses, and different frequencies, all with their own side effects. Common side effects include nausea, vomiting, hair loss, mouth sores, taste changes, and exhaustion.
Prostate cancer vaccine
Sipuleucel-T, or Provenge, is an FDA approved vaccine used to treat advanced prostate cancer that isn’t responding to hormone therapy. The prostate cancer vaccine is not mass-produced, so it’s made for each person who gets it.
Side effects typically only last a day or two, including fever, chills, fatigue, back pain, joint pain, nausea, and headache. Some men will experience problems breathing and high blood pressure.
Prostate cancer surgery has a high success rate, although the potential for side effects is high. The potential for incontinence and erectile dysfunction can cause major quality of life concerns and have a major impact on the self-esteem of prostate cancer survivors.
Regaining bladder control can take 6 months or more. You will have to exercise your bladder muscles to hold your urine, but you may experience leakage when your bladder is very full or when coughing or sneezing. Some men never fully regain control of their bladder. This can be managed through medication.
About 40% of men will not be able to achieve an erection, maintain an erection, or have a strong enough erection for sexual activity. You can start trying to have erections about 6 weeks after surgery. This is called penile rehabilitation. Loss of the ability to have an erection may not be permanent, as it may come back after as long as two years. Generally, the younger and healthier you are, the more likely it is that you’ll be able to maintain erections after prostate surgery.
Ejaculation becomes impossible after surgery, but this doesn’t mean you can’t have an orgasm. In fact, you can orgasm without having an erection. There are a variety of medications and devices that can help you resume an active sex life after prostate surgery, with or without erections.
Some factors make certain people more likely to need radiation in addition to surgery or even after surgery.
Like any surgery, the use of anesthesia and pain medication carries risk. All surgeries carry the risk of infection.
When surgeons talk about ‘radical’ surgery, they’re talking about ‘the root’ — meaning that a radical surgery removes the entire tumor and some of the tissue around it.
With retropubic surgery, an incision will be made in your lower belly. During retropubic surgery, your doctor will remove lymph nodes near the prostate to check them for cancer. Sometimes doctors will check the lymph nodes for cancer right then, called a frozen section exam. If they do contain cancer, your doctor may not remove the prostate and will instead talk to you about other treatment options. Usually the lymph nodes are simply removed and sent to a lab to be examined later.
If the bundle of nerves on either side of the prostate, which are needed for erections, have not been impacted by the cancer, your surgeon will leave them. This is what they mean when they talk about ‘nerve sparing’ surgery. Nerve sparing surgery does not guarantee that you’ll be able to have and maintain an erection after surgery, but it does improve your chances.
With perineal surgery, your doctor will make an incision between your scrotum and your anus, known as the perineum. This type of surgery is more likely to damage your nerves, but it is often a shorter operation.
With laparoscopic surgery, your surgery will be done through several small cuts, usually 4 small incisions in the abdomen. A camera and special instruments will be used to remove your prostate. The da Vinci system and SMART surgery are two types of robotic-assisted laparoscopic prostate removal.
After a radical prostatectomy, you’ll usually have a catheter for about a month. You’ll also experience pain after surgery, but your treatment team should be ready with a pain management plan to keep you comfortable during recovery.
You may be given postoperative radiotherapy (XRT). XRT increases survival rates in high-risk prostate cancer patients. Internal soreness from XRT can last months, either from the radiation itself or scar tissue forming from surgery. People with XRT are also more prone to UTIs, so it’s important to stay hydrated.
With cryosurgery, also called cryoblation, your tumor is killed by freezing it. Long, thin needles are inserted into your perineum and into the tumor. They’re then filled with very cold gasses, freezing the tumor. The surgeon will use a transrectal ultrasound (TRUS) to guide the needles into position. Men who undergo cryosurgery are more likely to experience erectile dysfunction.
Transurethral Resection of the Prostate
TURP does not treat the cancer, but it does make it easier to live with the cancer. Some tumors grow to block the urethra, making it difficult or impossible to urinate. This surgery removes the blockage. This is a good option for men who aren’t able to have a radical prostatectomy and are having difficulty urinating.
Stage I prostate cancers are small and fully contained in the prostate. They have a low PSA level and a Gleason score of 6 or less. They grow slowly and may never cause any symptoms or health problems.
If you are young and healthy, you may opt for watchful waiting, knowing you may need to treat your cancer at some point in the future. Some people want to treat their cancer right away and go forward with radiation therapy or have their prostate removed. Men who are elderly or in ill health often choose to monitor their cancer and may escape having to ever treat it.
Stage II prostate cancers are still contained in the prostate, but are more aggressive. They are larger, have higher Gleason scores, and have higher PSA levels. Stage II cancers are more likely to eventually spread and cause symptoms.
Active surveillance is still an excellent option for Stage II cancers, especially when it’s not causing any symptoms. Men who are elderly or ill often choose to skip treatment, as they are unlikely to suffer any ill effects from the prostate cancer.
Men who are young, healthy, and/or want to treat their cancer may decide to have their prostate removed or treat the cancer with radiation.
At this point, the cancer has spread outside the prostate, but it hasn’t gone very far. At this point, most people will have their prostate removed, get radiation, or have hormone therapy. While it hasn’t yet spread to lymph nodes, it’s now considered more likely to come back after treatment, even if it’s successful. Some people with stage III prostate cancer will still decide that watchful waiting or less aggressive treatment is the best choice for them.
Stage IV prostate cancer has spread out of the prostate and into other areas. It may be in your bladder or rectum, to nearby lymph nodes, or in other organs. Any place the cancer has spread outside of your pelvis is considered ‘distant.’ Your experience and prognosis will be very different, depending on how far the cancer has spread and where it has metastasized.
While sometimes stage IV prostate cancer can be cured, most of the time you will have cancer the rest of your life. Many men live with incurable prostate cancer for years and can continue enjoying their lives. At this point, most doctors will aim to shrink the tumors and keep the cancer from spreading further. They will also provide you with treatment in order to improve your quality of life — so you can continue spending time with your family, working, and enjoying hobbies — and make sure you aren’t in pain.
Prostate cancer nearly always spreads from the lymph nodes to the bones. Once cancer has spread to the bones, it can cause fractures, breaks, and intense pain. If you have extreme pain in your lower back or hips, you should go to the ER immediately. Doctors can help stabilize your bone structure and manage your pain. The American Cancer Society has information on managing cancer pain.
Bone metastasis, while serious, it is not likely to kill you. People can live for years after cancer has metastasized in their bones. High blood calcium levels can be dangerous.
There are specific treatments for prostate cancer once it’s reached your bones.
Bisphosphonates slow down bone cells called osteoclasts. Osteoclasts can become overactive when you have prostate cancer, so bisphosphonates can help relieve pain and high calcium levels, slow the growth of cancer, and help strengthen bones if you’re getting hormone therapy. The most common bisphosphonate is zoledronic acid, or Zometa. You’ll get this through an IV about once a month, along with supplements for calcium and vitamin D.
Bisphosphonates can leave you feeling like you have the flu. They may aggravate any joint or bone pain you’re already having. They can also cause kidney problems, so make sure your whole treatment team knows about any kidney problems you might have.
The most serious side effect from bisphosphonates is osteonecrosis of the jaw (ONJ). This is rare, but can lead to tooth loss and jaw infections, so you should have a dental checkup before you start treatment. You should not have any dental work done during treatment and you should carefully floss, brush, and get regular dental checkups. You can learn more about ONJ from the team at Savor Health.
Denosumab, also known as Xgeva or Prolia, also blocks osteoclasts. It can help prevent fractures and slow the spread of cancer. It’s frequently used for men when bisphosphonates and hormone therapy aren’t working as well as they should. It’s typically injected once a month, along with calcium and vitamin D supplements. Denosumab can cause nausea, diarrhea, and leave you feeling exhausted. It also puts you at risk for ONJ.
Radiopharmaceuticals kill cancer cells in your bones. They’re administered through an IV and settle into damaged areas of your bones, so they reach cancer in your bones throughout your body. The most common radiopharmaceuticals are strontium-89 (Metastron), samarium-153 (Quadramet), and radium-223 (Xofigo). These drugs decrease your blood cell count, which puts you at risk for infections and you have to be very careful about bleeding. Different drugs can cause different side effects, so ask your treatment team what to expect.
In order to gain FDA approval, treatments must go through clinical trials. Clinical trials give you access to the latest treatment options and methods of controlling side effects. However, there’s no guarantee that these treatments will work, be worthwhile, or be safe. Your doctor can help you decide if the risk of a clinical trial makes sense for you.
Half of all adults in the US have a chronic disease or condition. Other conditions may limit your ability to tolerate treatment options and make certain procedures unsafe for you.
Your treatment team will let you know how your concurrent conditions impact your cancer and treatment options. If treating or managing both simultaneously isn’t an option, your doctors will generally treat whichever condition is the most serious.
Men with heart disease are more likely to experience bowel and urinary problems after prostate cancer treatment. Androgen deprivation therapy (ADT), also known as hormone therapy, may increase your heart attack risk.
Choosing a medical team
Prostate cancer is very common. Any large hospital will have an excellent staff, capable of providing you with top-level prostate cancer treatment.
If you decide to treat your prostate cancer, you will likely use several types of treatment, each with its own specialists. You may also require various experts to help you manage symptoms and treatment side effects.
Your treatment team
General practitioner or family doctor
Your GP will continue to provide support and information, although he or she will likely take a back seat to your oncology/urology team. Your GP can be a fantastic resource for managing other conditions you have, as well as managing side effects.
Urologists are specialists in the urinary tract and reproductive organs. This includes the urethra, bladder, and kidneys. This includes treatments for cancer, incontinence, and sexual function.
A urologist has completed a 4-year college degree, 4-years of medical school, and then 4-5 years of medical training at a hospital. A urology resident is undergoing this training in a hospital, but has already completed medical school. Urologists are certified by the American Board of Urology after completing a certification exam.
A urologic oncologist is a urologist who specializes in cancer care. They treat:
Masses or tumors of the adrenal glands
Kidney masses, cysts, or cancer
A urologic oncologist has completed all of the requirements to become a urologist and then completed an additional year or two of training in urologic oncology. A urology fellow is undergoing this additional training. Urologic oncologists are certified urologists; there is currently no additional certification for their specialization.
An oncologist is trained to diagnose, stage, and treat cancer. They specialize in using chemotherapy and hormone therapy. Your medical oncologist is often the best person to talk to when deciding on the right treatment for you. Your oncologist keeps up with the latest research and can connect you with clinical trials. Typically, your oncologist will be the point person for your cancer care and will coordinate with the rest of your medical team.
An oncologist can also help you manage symptoms and side effects. Your oncologist will also typically be the one to start palliative care or hospice care.
A medical oncologist has completed a 4-year college degree, 4-years of medical school, and then 4-5 years of medical training at a hospital. They are then licensed by the state to perform medical oncology.
A radiation oncologist specializes in treating cancer with radiation. They can also help you choose between your treatment options and manage your side effects and symptoms.
A radiation oncologist has completed a 4-year college degree, 4-years of medical school, and then 4-5 years of medical training at a hospital. They must pass an exam from the American Board of Internal Medicine. Radiation oncologists must pass an exam to be certified by the American Board of Radiology. Certification must be renewed every 10 years.
A surgical oncologist performs biopsies as well as removing tumors. They are critical for staging your cancer as accurately as possible.
A surgical oncologist has completed a 4-year college degree, 4-years of medical school, and then 4-5 years of medical training at a hospital. Surgeons who specialize in oncology are tested and certified by the American Board of Surgery.
A pathologist performs and interprets imaging tests, like x-rays, ultrasounds, and MRIs, to diagnose and monitor your cancer. They also examine tissue samples. They are important for making treatment recommendations.
A pathologist has completed a 4-year college degree, 4-years of medical school, and then 4 years of medical training at a hospital. They are certified by the American Society for Clinical Pathology. A pathologist who has a specialization has undergone an additional 1-2 years of training.
A pain management specialist can evaluate, diagnose, and treat pain. There are a huge variety of types of pain, causes, and treatment options. A pain management specialist may also coordinate physical therapy, psychological therapy, and rehab.
A pain management specialist has completed a 4-year college degree, 4-years of medical school, and then 4 years of medical training at a hospital. They then completed at least one year of additional training in pain management. They may be certified by the American Board of Anesthesiology, The American Board of Psychiatry and The American Board of Neurology, or the American Board of Physical Medicine and Rehabilitation.
Nurses are a tremendous resource for education and support. They are often the primary point of care, rather than a doctor. Many nurses specialize in a certain type of care, such as in oncology or urology. A nurse may monitor your condition, prescribe medication, and administer treatment.
A nurse (RN) has completed a 4-year college degree and passed the National Council Licensure Examination (NCLEX). An oncology nurse (OCN) has worked as a nurse for at least one year, with 1,000 or more hours in oncology, and been certified by the Oncology Nursing Certification Corporation.
X-ray & radiology technician
An x-ray tech, or radiologic technician, uses special equipment to take images of the inside of your body. These images are then ready by a radiologist or pathologist.
An x-ray tech (RT) may have a 2- or 4-year degree run by a program accredited by the Joint Review Committee on Education in Radiologic Technology (JRCERT) or The American Registry of Radiologic Technologists (ARRT). Certification by ARRT is not mandatory, but most medical centers require it. Most states also require that x-ray techs are licensed.
A pharmacist is an expert in knowing what each cancer medication is used for, potential side effects, and potential interactions. Your pharmacist knows all of the medications you take, as well as any supplements, so they may catch potential problems when different specialists prescribe medications that may interfere with each other or cause problems for other reasons.
A pharmacist completes both a 4-year undergraduate and a 2-year graduate degree. They are then licensed by the state.
Physical therapy can help prostate cancer patients maintain strength, mobility, and function. With prostate cancer it can help offset bone weakening from hormone therapy.
Physical therapist assistants have a 2-year degree. A physical therapist will have a master’s degree or a doctoral degree from an accredited program. They are then licensed by the state.
Oncology social worker
A social worker can provide a wide range of counseling services and support for prostate cancer patients and their families. An oncology social worker will connect you to resources, help navigate health insurance coverage, and support you as you cope with the emotional aspects of cancer.
A social worker has a bachelor’s and master’s degree (MSW). They must pass the Association of Social Work Boards exam and meet other requirements to be licensed by the state.
The healthier you are, the better your chances are of beating cancer. Eating nutritious foods can help you manage side effects, reduce fatigue, and maintain your strength. Keep exercising, or start now.
While eating healthy is important, this isn’t the time to dramatically change your eating habits. If you suddenly go vegan or start juicing obsessively you can put yourself at risk for nutritional deficiencies — plus, you’re making your life more complicated during a difficult time.
CBD oil, or cannabis oil, has become a popular home remedy for treating prostate cancer. Most people who use CBD oil also get traditional treatment for their cancer. Unfortunately, there have not yet been reputable studies on its use as a treatment.
This experimental treatment is only legal if medical marijuana is legal in your state and you follow proper procedures.
It’s important to keep doing the things you enjoy. Make new happy memories. Stay in touch with your close friends. Spend quality time with your family. Remember what you are fighting for; your life is more than just healthcare.
You’re very likely to develop prostate cancer, but it’s not likely to kill you. Of people who are diagnosed with prostate cancer, this is how many of them are alive in 5, 10, and 15 years:
Even when prostate cancer is incurable, you can live for a very long time with a terminal illness.
People who are diagnosed with prostate cancer that is contained within the prostate or has spread to nearby areas have a 5 year survival rate of nearly 100%. Once the cancer has spread to distant lymph nodes, bones, or other organs, 1 in 3 men will still be alive in 5 years.
Of course, you aren’t 1 in X people, you’re an individual. Statistics can give you an idea of what to expect, but every person’s experience is unique. This is why your doctor may be reluctant to give you a clear idea of how long you have to live, your odds for successful treatment, and what to expect — there’s no way to know for sure what will happen to you.
Having cancer doesn’t mean you’ll be in pain. When you do experience pain, your treatment team can help you relieve it. There’s no need to be stoic — your doctors and nurses are there to keep you comfortable.
Many people are concerned about becoming addicted to pain medications. This is incredibly rare among prostate cancer patients. Talk to your doctor or pain management specialist about your concerns.
Blocking testosterone can increase the natural process of bone loss due to age, causing potentially serious problems. After having hormone therapy or an orchiectomy, you should make sure to get plenty of calcium and vitamin D. Your doctor or oncology dietitian can help you determine the right amount. Radiation therapy and certain types of chemotherapy can also decrease bone density. Your doctor can measure your bone density and provide you with medications.
You should not get more than 1,500 mg of calcium a day. Two servings of dairy a day will generally provide plenty of calcium without providing too much.
Stress and uncertainty
Living with the symptoms of cancer, treatment side-effects, and stress of dealing with a potentially deadly disease can be incredibly stressful.
Connecting with other patients and survivors can be incredibly helpful when dealing with the uncertainty of living with cancer. Most hospitals have support groups for cancer patients. Large hospitals will have groups specifically for prostate cancer. Even if support groups aren’t your style, get in touch with other people who’ve experienced prostate cancer in whatever way you feel comfortable.
Sex and masculinity
Prostate cancer’s impact on your ability to have sex the way you’re used to having it can be incredibly distressing. It can be helpful to talk to a counselor or psychiatrist who specializes in sexuality. Men find that they feel generally unhappy with life or less like themselves when their sex life changes dramatically for the worse.
Hormones have a huge impact on how you feel about yourself and your personality. Hormone therapy dramatically changes your hormone levels. It can also change the way you look and your sexual desire. Talk to your treatment team about the side effects and how you can cope. The side effects of hormone therapy have a huge impact on the traits men associate with their masculinity: virility, libido, strength, and endurance. It can be shocking for a man who’s had a high sex drive and an active sex life to suddenly find himself without any libido. Our sexuality is an important part of how we view ourselves.
Depression is a common side effect of hormone therapy, so don’t be ashamed to ask for a referral to a psychiatrist as soon as you start to feel down. You may also experience problems concentrating or remembering things.
Any prostate cancer treatment can make it more difficult for you to get and maintain an erection, not just surgery. In fact, 4 years after surgery, the rate of men who report ED is the same for both radiation and surgery. Doctors don’t understand why some men lose their ability to have erections while others don’t.
Some doctors believe that it’s important for men to get erections soon after surgery, often with the help of medications such as sildenafil (Viagra), tadalafil (Cialis), or vardenafil (Levitra), to keep the tissue healthy. You can also use penile injections or vacuum devices to create an erection. It is thought that the increased blood flow to the penis helps the nerves heal, even if you aren’t able to get an erection. Many men find that they can orgasm without an erection. You can please your partner without requiring penetration.
Regardless of your ability to get an erection, you can still be sexual. Sexual touching, alone or with a partner, can help you feel like yourself and learn to feel comfortable with the changes your body is going through. Remember that you and your partner are going through a lot of stress and that changes in sexual desire may have nothing to do with appearances or skill. Talk to your partner and your urologist about your options.
Incontinence and urine leakage is a temporary side effect for most men, but sometimes it’s here to stay. Up to half of men experience leakage a year after surgery. More experienced surgeons have lower rates of incontinence after surgery. It’s no shock that incontinence is a huge psychological burden.
Thankfully, most men who experience incontinence are able to regain control through pelvic muscle exercises, bladder control techniques, biofeedback, electrical stimulation, and medications. Avoiding caffeine can also help.
Some men work through prostate cancer treatment, while others are unable to continue working. This depends on what sort of career you have and how flexible it is, as well as what treatments you choose and how your body responds to treatments.
If you aren’t in pain or are able to manage your pain with medications that don’t interfere with your ability to think clearly, you may be able to continue working. You may find that you need to take breaks throughout the day because you have less energy.
Survivorship and preventing recurrence
Cancers that can’t be cured can often be managed like a chronic illness. Even when your cancer is cured, many cancer survivors are worried about it coming back. Learning to live with cancer can be very stressful.
Your treatment team can work with you to develop a survivorship care plan. This plan should outline what sort of follow-up tests are necessary and a schedule for monitoring your cancer status. It should clearly explain what side effects may last or even start after treatment has ended. Some treatment side effects appear years after treatment. Your doctor should explain what symptoms you should look for as a sign of recurrence or related health problems. It should also explain dietary changes and exercise regimens that can help reduce your risk of the cancer coming back. Cancer survivors have worse diets than people who’ve never had cancer.
Doctors commonly recommend PSA tests every 6 months for the first 5 years and once a year after that. Your treatment team may also recommend bone scans or other imaging tests. Prostate cancer may recur years after treatment, or you may develop a secondary cancer. Men who’ve had prostate cancer are more likely to get small intestine cancer, bladder cancer, thyroid cancer, thymus cancer, and melanoma. If you’ve had radiation, you are more likely to get rectal cancer or acute myeloid leukemia. This makes monitoring and follow-up care especially important.
It’s important to keep copies of your medical records. You will need these to make sure your treatment team always has access to the information they need, when they need it. Be sure to look over your medical records to check for missing information and errors.
For family, friends, and other caregivers
Talking about medical problems can be difficult for many men, so when it’s connected to their sexual function, it certainly doesn’t get any easier.
Caring for someone with prostate cancer
If someone you care about has prostate cancer, the first step is to talk to them and see how they’re doing. This can give you an idea of how you can support them. Remember, you can’t save your loved one. He’s still able to make his life choices and everyone is best off when those choices are respected.
Some people are eager for help researching their health and having company and support for doctors visits. Others aren’t. Don’t force it. On the other extreme, there’s no need to make cancer a forbidden topic. Pay attention to his response when you ask questions to see when your attempts to be helpful feel like prying and nagging.
People with prostate cancer often appreciate help around the house, with meals, with errands, and transportation to and from appointments. Walking the dog and helping with childcare can be a wonderful way to help.
Don’t turn your relationship into a chore. Keep doing the things you love to do together, even if you have to modify them or get creative. Dying of cancer is difficult, but this will not be a totally bleak experience. There is still joy ahead, even in the dying process.
One important thing is to not turn to the patient for support in dealing with your own struggles with their illness. You don’t need to keep a happy face all the time — in fact, you shouldn’t — but it’s best to seek outside support. Talk to your other friends and family members about how you feel. If your emotions are interfering with your life, or even if they’re not, working with a professional counselor can be incredibly helpful.
What kind of support do prostate cancer patients need?
When friends and family hear someone they care about has been diagnosed with cancer they want to help, but many people aren’t sure how to help.
Many men resist going to the doctor, even when they know something is wrong. Congratulate him on being brave and proactive about his health. Acknowledge that getting a cancer diagnosis is terrifying, but that most men with prostate cancer either never have to treat it or are successfully cured. There’s no need to start planning any funerals.
Don’t pressure someone to talk about their feelings. Let people know you’re there and ready to listen, if and when they want to. The most important thing is just being there. Do fun things together — and keep him company for the not-so-fun things.
Don’t force him to get healthy. Radical changes in diet and exercise can be traumatic when so many other things are going on. If you’d like to help him eat healthier, find healthier recipes of the foods he loves rather than trying to force him to eat different foods. That includes junk food. Sneak in a few more veggies. If he drinks lots of soda, help him to cut back gradually and experiment to find alternatives he enjoys drinking.
Don’t let cancer take over his life. Help him stick to his normal routine, hobbies, and activities as much as possible. Encourage him to continue doing the things that give his life meaning.
If you spend a lot of time with someone, you may notice that they’re not feeling well before they do. You may also spot side effects and other signs that something’s wrong. Check in to see if he’s feeling alright and encourage him to talk to his doctor or even seek emergency treatment if symptoms are serious enough.
Remember that it’s his body and his life. Express your concerns, but respect his decisions. Be sure to give him a chance to talk to his treatment team privately. That’s normal and doesn’t mean he’s trying to exclude you from his support team.
Getting a prostate cancer diagnosis can be incredibly stressful, in part because it takes so long to get an official diagnosis. Waiting weeks or months to determine whether or not he has cancer, what stage it is, and what treatment is necessary is incredibly stressful.
Sometimes distraction is the best plan of action. Throwing himself into work or other projects doesn’t mean he’s in denial.
Remember that ultimately any treatment decisions are his decision. You can express your concerns and opinions, but once he makes a decision it’s your place to support him. There is never a single correct course of action in medicine, so whatever decision he makes is the right choice for him.
Even when someone is not undergoing treatment, knowing he’s living with cancer can weigh heavily on his mind.
Be around to listen
Don’t forget to do the things you normally do together
Don’t forget to treat him like a normal person. He’s not just an inspirational cancer fighting figure, he’s still the person he’s always been.
Giving rides to and from appointments
Help carrying out doctor’s advice, if they’re open to it
Help make sure he’s eating enough and staying hydrated
Help with household chores and yard work
Help caring for children and pets
Preparation of healthy meals and snacks
Be there to listen
Do things together, even if it’s just watching TV together
Getting back to normal after prostate cancer can take months — or years. Some people never feel like their old selves again, which can cause feelings of grief as they adjust to their new lives.
If he is dealing with incontinence, choose seats and activities where there is easy bathroom access
Giving rides to and from appointments
Help carrying out doctor’s advice, if they’re open to it
Help make sure he’s eating enough and staying hydrated
Help with household chores and yard work
Help caring for children and pets
Preparation of healthy meals and snacks
Be there to listen
Do things together and help him get back to his normal activity level
As a survivor
Prostate survivors may find themselves worrying about the cancer coming back. They may still be coping with long-term effects of treatment and cancer, even as survivors.
Find ways to make reducing the risk of recurrence fun, like cooking together or going for a hike
Show compassion for his experience and support him
Some men will live for years with terminal cancer. This can be incredibly difficult for families and friends to cope with. Knowing that someone will die of cancer and experiencing the rollercoaster of treatment success and failure can be devastating. Nothing can prepare you for the emotions of dealing with a long-term illness.
Therapy and other professional support isn’t just for patients. Don’t hesitate to get support for yourself.
Hospice & palliative care
Many families find that calling in hospice care early is a wonderful support system. Many hospice programs provide:
Visits from a nurse to answer questions and make sure the patient is comfortable.
Visits from a health aid to help with bathing and other tasks.
Assistance with acquiring and giving pain medications and other prescriptions.
Access to social workers and chaplains to help the patient and family prepare for the end of a life.
A home health aid can help you with bathing, toileting, and other tasks family members may be uncomfortable doing. Getting outside help is a great way to allow you to focus on being a family, rather than healthcare and personal care providers.
Understanding risk factors for prostate cancer
Prostate cancer is rare among men under the age of 40. The average age of diagnosis is 66.
African American men are more likely to develop prostate cancer. Native Americans and Asians have a lower rate of prostate cancer.
Men who have a father or brother with prostate cancer also have a higher risk of developing prostate cancer.
If prostate cancer runs in your family
Screening for prostate cancer
If you have a family history of prostate cancer, you should start getting screened 5 years before the youngest first degree male relative was diagnosed. If there’s a genetic mutation involved, you should start getting screened no later than the age of 40. Genetic counseling is recommended if 3 or more relatives had aggressive prostate cancer or if there is a family history of breast, ovarian, or pancreatic cancer. When possible, family members with cancer are tested first.
These are just general guidelines, so you should talk to your primary care physician to determine when is the best time to start screening and discuss a referral to a genetic counselor.
Evidence suggests that maintaining a healthy weight reduces your risk of developing prostate cancer.
Eating a plant-based diet providing a range of nutrients and getting regular physical activity can reduce your risk for developing cancer in general, although we don’t know that it can reduce your chance of developing prostate cancer specifically.
It’s rare when there’s a gift that’s perfect for 99.9% of any group of people, especially one as diverse as caregivers. But there’s one gift nearly ever caregiver is hoping you’ll give them:
We’re hoping you’ll call and say:
You’re free this weekend and would love to keep an eye on mom.
You can take her to the doctor’s the next few appointments.
You’re running to the store and would be happy to pick up whatever I need.
You’re going to come mow the lawn this week, so what time works for me?
Those gifts are difficult to wrap, though. Here are our suggestions for something you can put under the tree.
From the relaxing to the irreverent, there’s quite a selection of adult coloring books to choose from. They’re a great way to relax, as well as keep care recipients entertained
There’s a wealth of information out there about caregiving written by people who’ve been there, done that. Just be sure your attempt to help doesn’t come across as criticism.
Inspiration and affirmations
We all have days when we need something to pick us up and keep us going. These books have real words of hope and motivation from other caregivers.
Time for introspection
Journaling is both a wonderful activity for caregivers of parents or grandparents and a way to wind down after a long day. Caregivers so often get wrapped up in putting one foot in front of the other that we lose sight of the big picture.
A great companion gift is the promise to help out for an hour or two every week to give them time to write.
Peace of mind
Caregiving is incredibly emotionally difficult. As someone who hasn’t been a caregiver, it can be difficult to understand, but that doesn’t mean you can’t be supportive. Pair a helpful book with plans to get together and just chat, as well as the offer to help them run an errand or two each week.
Caregiving can both strengthen and challenge relationships. Here are some tools to bring people together.
A good rest
It’s tough to get a good night of sleep with constant interruptions and so many things to worry about.
We’d love you to be there each day to give us a hand and some support, but there are other ways to let us know you’re thinking of us every day.
I’m generally not a fan of gift cards, as I either fail to actually use them or end up buying things I don’t really want. Gift cards to places you know they shop at — be it their favorite store or something practical like their local grocery store, pharmacy, Amazon, and Target. See if they’d like a cleaning company sent over once a month or a laundry service. See if they’d like to be signed up for a meal delivery service. Don’t just ask “what do you need?” ask if x, y, or z would be better for them.
If you don’t have the money, perhaps you have the time to help them run errands, keeping the care recipient comfortable for a few hours, or cleaning up the yard. Sure, maybe you’re not up for the hands-on part of family caregiving, but we all have those things on our list we just can’t get to. There’s the porch that needs a fresh coat of paint, the light fixture that needs to be replaced, and all those other chores that pile up. Lending a hand at the things you’re good at would be much appreciated.
Caregivers make up the 65 million Americans who selflessly give their time, energy and resources to care for loved ones. From sick spouses, and children with special needs to aging parents or relatives with handicaps. Caregivers are the ones who sustain our communities, but who will support them?
The Caregiver Space is a dedicated online space for exhausted caregivers to safely express themselves, find emotional support and the tools they need to live healthier lives.
We’re thrilled to announce a new partnership that will bring The Caregiver Space’s resources in front of TheMighty‘s wide-reaching readership. We will now have a growing home page on TheMighty and appear on many stories on the site, allowing us to get many more people involved with our organization.
TheMighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. TheMighty publishes real stories about real people facing real challenges.
As caregivers, we spend a lot of time with the person we’re taking care of. Sometimes that leads us to neglecting other relationships…and sometimes the time is never quite right to say what we’ve been meaning to say.
Here’s what our community members wish they could say to someone they love, in 5 words:
I got my bachelor’s degree. To my dad. Quitting school was the one thing about which I felt I’d let him down. – S.S.
I understand and forgive you. – S.L.
I’m sorry I hurt you. – T.M.
I value your love Mom. – S.S.
I love you so much. – K.E.
Why do you do this? My dad never calls or talks to me. What did I do wrong? – J.D.
Wish we had more time. – K.M.
If only I had known. – T.R.
Thanks for always being there. – P.V.
‘I love you’ to my dad…we never said this to each other. – J.E. & D.B.
“We finally planned our wedding-date” to my Nana, she helped raise me and passed on May 2nd 2015. She will not get to see get married. – D.Y.
You tried your best, Dad. – J.W.
I love you. I’m sorry. – F.H.
Thank you grandpa and grandma!!! – A.S.
You were always my hero. – C.R.
Thank you for raising me. – S.R.
I know you meant well. – P.C.
I wish I did more! – L.M.
Wish I could have helped. My close friend lost battle with addiction. K.C.
Goodbye I love you Grandpa! – D.S.
You were always my rock! (To my Daddy) – K.J
Thank you and I’m sorry. To my mom. – P.V.
Tell me your story, Grandpa. – C.H.
Please forgive me. I’m sorry. – B.P.
I’m taking you home now. – S.S.
Why didn’t you tell me? – K.K.
Your granddaughter is 21 today. – S.H.
I forgive you dad! – L.S.
You can let go now. – C.V.
Dad, you tried your best. – B.S.
You have changed my life (for the better) – A.Z.
You were my life, Garry. – S.N.
You’re the definition of cool! – S.R.
I love you. To a boyfriend that died in the Army. – E.H.
Sometimes we just can’t get it out in five…
I love you thank you for raising me I’m sorry I wasn’t appreciative and loving to you I should of listened to you about him I’m a good person because of you. – R.G.
Thanks Daddy for being the best!! I love you!! – J.R.
We focus exclusively on providing content by, for, and about caregivers.
You’re a caregiver if you…
are supporting a loved one through an acute illness, like cancer
are supporting a loved one in recovery after an accident
provide support for a loved one who has a chronic illness or disability, like diabetes, mental illnesses, or autism
help an elderly relative or friend with household chores, the bills, and other tasks
are a professional caregiver in a home, nursing home, hospital, or other facility
volunteer to support the ill, disabled, or elderly
have ever done any of the things mentioned above
We welcome a wide variety of artwork and writing for publication on The Caregiver Space
Some of our authors are experts because they have degrees, certifications, and professional experience. Others are experts through lived experience. Many have both. We’re interested in honest stories with strong voices.
This is an inclusive space. We welcome all viewpoints and share stories that reflect a wide variety of opinions and beliefs. We each share our personal story without tearing down others. Your voice is welcome here.
Submissions can be sent to firstname.lastname@example.org (with your submission in the body of the email) or submitted online. You must be logged into your Caregiver Space account to submit your post online.
Deadlines: Rolling, submissions reviewed each Monday.
We all know there isn’t enough support out there for family caregivers. However, there is some support out there. As a family caregiver — a spouse, sibling, child, other family member, or friend — you may qualify for financial assistance.
Some programs in the US provide family caregivers with a set stipend while others provide an hourly wage. You certainly won’t get rich as a paid family caregiver, but it can help replace some of the lost income and cover some of the increased costs of caregiving.
I can’t work now. I don’t have an income but thankfully my husband does. We make HUGE sacrifices in what we do/buy. A lot of medical supplies/private pay Aids are paid out of pocket. Sure, it would be a blessing if it was all covered. We paid over $10,000 to make our house handicap accessible. It’s HARD! – Andrea R.
I left my job 3 years ago to care for both my parents. – Pat E.
I provide 24/7 care year round. No vacations or days off. My mom is 89 with dementia. I get paid $0.00 for this care. Yeah I have to get her up, bathe, and dress her. Also prepare meals, do her blood sugar, blood pressure, and medications twice a day. I change depends for her. Depending on her functioning level I may have to puree her food and feed her. I handle her medical appointments as well. – Elizabeth B.
My daughter became disabled at 21 and I had to be her caregiver. In Alabama caregivers get nothing. I’m single so had to move us home to my mothers. She is 25 now but praying I can find a part time now. – Kim H.
There were so many times I had to chose between getting mom her med’s or paying a bill. It’s sort of what I am going through myself now. Mom was a little better off, since she had social security and my dad’s retirement, plus my pay. Me, all I have is my disability. At the very least it puts a roof over my head, which gets rid of that stress. – Thom F.
The last day I worked outside the home was Aug 2, 2014. Lost my job, car, in massive debt I can’t pay. I finally swallowed some pride and signed up for food stamps. $194/mo is all I have coming in. I love my mom dearly. – Tom C.
My Mom quit her job of 35+ years to take care of my Gran; we did shifts – her, my brother, and me before she passed from cancer (she also had TN). I’m blessed to be a SAHM but I also have 2 daughters – 1 autistic and 1 bipolar/autistic, and a husband with multiple medical issues (2x heart attack, PE, diabetic, TIA, etc) and I have TN. Honestly, we sold our home and my Mom’s home now and we live in a trailer park 2 blocks apart. It sucks to be sick in America. – Maria E.
I have to take early retirement to take care of my husband who has Alzheimers with Lewy bodies dementia and Parkinsons. Plus he’s legally blind from glaucoma. We don’t qualify for SSI and my insurance won’t pay for in home csre, so at 62 it’s me. I just hope I can do it. – Vicky C.
I ended up having to use every penny I had as well as having to sell everything even my car so i could take care of my mom and dad. While i don’t regret taking care of my parents it changed my life in ways I wouldn’t wish on anyone. – Marsha H.
Life is interesting..thirteen years taking care of my husband who had a stroke with brain injury, dependent on insulin…took care of my father who died of emphysema and now have my mother who suffers with heart failure and diabetes. One day at a time..we are on SSI income with medical services and medicine going up all the time. Working on keeping my house and paying the bills each month. One day at a time..we are blessed and this too shall pass. – Carlene E.
Caregivers are heroic and save our country millions in Medicare/Medicaid dollars annually by doing this difficult work themselves, versus placing their loved one in a care system. – William W.
Getting paid or receiving some kind of stipend would definitely relief the stress and worry over money for sure. I haven’t found any solutions yet. – Barb G.
The rules are different from state to state,county to county. In Prince William County,Va…they believe it is a Spouse’s Duty to take care of their spouse (I had to leave my job to take care of my husband),but if we lived 20 mins north,in Fairfax County,Va, I would be a paid caregiver! – Kimberly O.
Here’s how the programs work for real caregivers, like yourself:
I have been a paid caregiver to my hubby for sometime now, I’ve been home what seems like more then work. I am so grateful for this program, and even more so for the company I work for. Hubby hated new nurses coming out all the time giving his full medical history for every visit and never feeling any comfort or hospitality. I can recognize his needs before he does, and he too is grateful. – Shannon A.
I get paid. It helps, but I have to tell you the process in getting it took over 6 months and it’s a monthly battle trying to figure out all the red tape. You’re dealing with the government so keep that in mind. – Jeanne O.
I have a son. I am his carer and was on the carers payment and believe me it is not enough money to pay bills and live on. I gave it up and went back to work. But I still shower, feed, and dress my son before work. He can stay home a bit by himself till we get back and start all over again. – Valerie Z.
My father should have been eligible for this and was declined. – Sherry H.
I’m in Colorado and I get paid to care for my disabled husband. – Jessica C.
After many years as an unpaid caregiver for three different generations, I now qualify to be a paid caregiver for my adult medically fragile son who lives with me. Because of this, I can now afford his (expensive) special dietary needs, additional insurance that covers specialists who couldn’t/wouldn’t see him on medicaid/Medicare and to pay for uncovered medical expenses ie medications and his wheelchair. My son’s health is significantly more stable, it has greatly improved the quality of his life, but also mine. I’m no longer constantly torn between financial desperation and my son’s needs. It also saves the state money, as nursing home care would be expensive and as a family member I get paid a lower rate per hour than non-family members would. Win-win all the way around. – K.S.
In Kentucky I get a generous caregiver budget for my girlfriend. If we were married that wouldn’t apply. It’s not right. – Mike S.
In Texas they pay family caregivers, although you can’t live with the person. You can get paid 4 hours a day to be with them. – Heidi V.
In Texas there is a 6 month waiting list just for the paperwork to apply, even if patient is on hospice. If the patient has any funds over $2000 it’s a big fat DENIED! – Katherine W.
I get paid to care for my mother. We’re in California. – Kim D.
I get paid to take care of my son, but they will not take out social security for me for retirement. I don’t understand why not? – Colleen A.
Colorado has amazing benefits. You do get paid as a CNA to provide care. – Jessica G.
If you qualify for respite or nursing care in Michigan everyone can be paid except the spouse. The person that knows them and cares about their well being the most. The person that needs to be at every doctor appointment. It is so frustrating! – Danielle H.
I am in Maine. I don’t know about other companies, but the one I work for will pay you if you take the training. It’s all done online at home. – Cheryl M.
I am in the process of applying in California. The person receiving care has to be on Medi-Cal. Then they need a note from their doctor and a home visit. Fingers crossed that mine goes through. – Sharon K.
Yes, you can get paid in Illinois, but with stipulations. I needed to quit my job to be caregiver to my son and went through the process with the state, which took over a year. All they qualified me for was a respite care because the process took so long and I had already quit my job. Now the new governor coming in is probably going to take a lot of that respite away! – Nancy E.
In North Carolina you can be paid to be a caregiver for your adult children with disabilities. It’s not a lot and you can only get paid for 28 hours a week. It helps when you have to suddenly give up a job to care for your child. In our case, my daughter was severely injured in an accident over 3 years ago that left her a quadriplegic and with a TBI. I’m so grateful to have this income. I get paid through Independent Living. – Patricia W.
The state of Illinois has a program that I was paid through for over a year. It helped out a lot. I did it through the DHS’s DORS. Worked directly for my mother. It didn’t take long to do. In fact it was rather quick. Maybe 2 weeks? But with the state so messed up and all the budget cuts they were looking for anyone they could kick out of the program. And one day they showed up to do an unscheduled assessment. The case manager and his supervisor said my mom was too far gone and recommended a nursing home and kicked her out and that was that. – Aaron E.
In Illinois DHS DORS (Department of Human Services, Department of Rehab Services) only provides help for disabled people 59 and younger. I just got an email from them. They said go through Dept of Aging. Which I did and they said I would have to go through local senior services center, which told me the previous info I posted. So once again I’m in a dead end of endless chasing agency after agency. – Kelly W.
Yes, it is true you can get paid for caring for a family member. It’s very little, but better than nothing. – Judith M.
I am with vision home health care garland, Texas. It helps with my moms extras. – Angie P.
I get paid forty hours a week.. I only took up the option about a year ago. – Carolee S.
In Texas there is, but the waiting list is long. – Jewel K.
It isn’t the best deal. My niece lives in a state with generous caregiver benefits, and got paid. Then her dad died. She had no work skills or history and they lost the subsidized apartment. – Kathy G.
In Michigan they will pay anybody but a spouse. Our caseworker told us to get a divorce just a piece of paper! That’s crap we are still married! – Nikki D.
I live in the state of Arizona, I am a caregiver for my adult son. I work for an agency and became a certified provider. The agency can help you with paperwork to see if your loved one qualifies for services.If they do, you can become a certified provider and care for them. – Suzanne K.
In Georgia they have to be on Medicaid. My mom with ALZ will qualify for medicaid in the next year and then I can get paid to care for her as a registered CNA. – Sonja A.
If you live in Massachusetts, there are many programs that provide a money stipend for caring for loved ones in the home through medicaid. – Christine H.
I live in Ohio, I’m a certified caregiver for my adult daughter. I’m a independent provider through Medicaid and Department of Developmental Disabilities (DODD). It was a really simple process, requires CPR training, 8 hours of training, a background check, and a 20 page packet that I had to fill out. The worst part was the waiting; it took 16 weeks for me to receive my provider number. All well worth the wait, now I make a living along with caring for my baby girl! I thank God everyday for the fact it all worked in our favor. It took me four years to figure out that the program was available. – Scott T.
Only eligible for this if the loved one has Medicaid in Missouri. – Allyson L.
I get paid by Medicaid to take care of my husband here in Colorado. He’s paralyzed from his neck down following a car accident. – Ann T.
Oregon does, but it is a Medicaid program, so you pretty much can’t have much assets and there is a ton of other rules. And if you are a spouse then there are even more hoops to jump thru, as it’s a different program in Oregon, though still Medicaid. The process was supposed to take a couple months. Eight months later we finally got through all the red tape. – Dwight P.
My husband is disabled, C-4,5 quad. I am now able to be paid to be his caregiver. My hours are limited. Medicaid/Medicare keeps you stuck being dependent on them. My husband was a Master Plumber and could do some work from home on his computer. But, if he earns income, he loses his benefits. His medical costs are so high that we’re stuck. – Ann T.
I am in Maryland I have a 23 year old son with cerebral palsy, in a wheelchair and totally dependent of care. I left my job a year ago to take care of him full time. He has a caseworker, but they do not tell people these programs are available. I had to research and ask. Then they act like they know nothing about it. I pushed the issue and they found information. She applied for me to be put on his Medicaid waiver to be his paid caregiver. It has been a month I have heard nothing don’t even know what the pay would be. I hope everyone that needs this gets the help they need. It comes down to having to work but having to be home to care for them full time. I feel like there is either no help or very slow to get answers. – Linda S.
I get paid by medicaid to care for my mother. It’s a total blessing. – Angelina F.
Arizona has privately owned companies that hire family members or friends of family to provide in home care as well as people who just want a job. The client must qualify for care through state funded medicare. Client then gets assigned a company and caregiver. The client can request a specific company and caregiver to provide that care. More than half employees of in home care companies in Arizona are family or friend of the client. – Debra C.
I got paid thru Medicaid in Ohio to take of my Handicapped Brother. I took a lot of classes to get certified by the State. It’s not much, but it sure as hell helps. – Emma B.
In Tennessee if your loved one qualifies for both the PAE (physical assessment evaluation requirements) and the financial requirements for the Medicaid Choices program. However, I was told that in the near future Tennessee might do away with a family member being able to be the paid caregiver. For now it is in place. – Holly O.
In Illinois it’s a complete joke! I applied for this and was told my mom and I met the requirements. However, they would only pay 20 hrs a week and I had to go through training and get hired on through a company that works with the state. And if I was on the clock with them I wasn’t aloud to refill my mom’s meds or dispense her meds to her! Oh and she would have to apply for Medicaid and if she were approved when she passed away they have the right to put a lien on her house to repay back whatever they paid me! So I would have to go through training for someone to tell me how to take care of my Mom when they have no clue then they slap on a lien! We are sinking financially I have no choice to try to look for a job now and pray she’s ok alone. – Kelly W.
I was told I could be paid to care for my mom here in Illinois. But once she passes, her estate will need to pay the state back all the salary it had paid me. So, ultimately, my mom really has to pay me if we choose that route by taking it away from her beneficiaries. – Cindy H.
Each state has different Medicaid programs, so run a specific state Medicaid web search. There are also other options for paying for senior care services such as reverse mortgage or viatical settlement. – A.F.
Consumer Directed Attendant Support Services
I’m my fiancées full time paid caregiver. He has a Traumatic Brain Injury and Epilepsy due to his TBI. He is on Medicaid, so there is a Program so that you can be a paid caregiver called CDASS (Consumer Directed Attendant Support Services). It’s a home care choice for people with disabilities. Doesn’t matter if you’re family or not, if your loved one qualifies the caseworker determines how much care they require and that determines how much “allocation” (money) the state allows per month. The loved one can have more than one caregiver. They can have as many as they want, but you have to stay within your monthly allocation amount. Before this program was brought to our attention I was paid through a Seniors Resource Center so there are other options out there. Please be aware that it’s not the same in every state. I live in Colorado.
Community Based Alternative
In Texas it depends, I’m a paid caregiver for my adult son, but not until he was accepted for Medicaid and then we signed him up to a program called the Community Based Alternative or CBA. They pay me for 21 hours at minimum wage. It was a long wait, but we had nothing but time. He sustained a brain injury in a auto accident at age 30. It seems as though Medicaid has a don’t ask, don’t tell policy, so you have to ask. – Jan C.
Agency on Aging
If you have an Area Agency on Aging, that’s what it’s called here, you can ask them for help. I can take care of my mom and get paid, fill her meds and what not, but since she owns her home she can only get a voucher for $300. She has to pay whomever cares for her. Then she sends the signed paper to Agency on Aging of Westmoreland Co, then she is reimbursed. If she sells and rents a small apartment then she qualifies for more help. – Heather G.
Contacting your Dept. of Aging would be your first step. They will set an appointment to assess mom and her needs. My mom is non-ambulatory but was only given 15 hours a week. I had to go through my state rep to get a reassessment and I’m now at 22.5 hours a week. I had to go through a background check, fingerprinting and 3-day training class with Help at Home. I was told by the caseworker for DOA that I would get more hours if we didn’t live together, since they expect me to do all the other work anyway. – Michelle C.
I live in Arkansas and the Agency on Aging pays me two hours a day. It’s a joke. I am here 24\7. – Janet C.
In Illinois you can thru the Dept of Aging. Help at Home is the agency that I am paid thru for 22.5 hours a week at $10 an hour. Dept of Aging assesses the patient and determines the amount of hours that will be allowed. I am not allowed to give meds on company time. I had to give up POA to my brother. I am the only family member caring for mom. I am with her 24/7. The amount of hours paid is an insult but better than nothing. – Michelle P.
Supportive Home Care
It was a long processes for me in the state of Wisconsin. It took from my first initial phone call in February to receiving my first payment in July. Call your local Aging and Disability department. You can get paid Supportive Home Care (for doing laundry, cooking, errands etc) and then they have Supportive Home Care (for anything hands on…bathing, changing etc) you can make a decent amount of money. Plus the program is also to help keep your money in your pocket. They help pay copayments on prescriptions, if the person needs depends, disposable pads which is help and they have it delivered right to your house. It is most definitely worth checking into it. – Dawn
If you take care of a veteran, there is a benefit called Aid and Attendance available through the VA. I quit my job two years ago, moved in with my Daddy and he received an additional $700 per month to give to me for taking care of him 24/7. It’s not much but, it helps. – Stephanie T.
Rhode Island does not cover it unless you are 50% below poverty level and then it’s a huge waiting list to even get into the program if you qualify. Veterans affairs is even more bush, they don’t cover crap unless it was combat related. If not then ‘it’s we can give you a Dr or put them in the VA nursing home.’ If you have ever been to the VA you will understand that going to the local veterinarian would be a better choice. – Kevin S.
I’m in Tennessee and get paid through my papaws VA benefits. Differs in every state I guess. I’m sorry you all can’t get paid. Something should be done. – Elizabeth R.
I get a monthly stipend from the VA to care for my husband. Post 9/11 disabled vets and their caregivers should look into it. – Katy C.
In Florida we have VA Aid & Assist. My dad was a veteran. I get it for my mom. I am able to work and have someone with her when I am not. – Sandy H.
I’ve been my husband’s caregiver since November 2003. He became disabled due to service in Desert Storm; he was one of their guinea pigs that they injected with pesticides. The VA turned me down as his spousal caregiver since he’s not bedbound. – Glynnis P.
My husband has MS. He was also in Desert Storm and given a huge cocktail of unknown vaccines. We are currently pending on Aid and Attendance as well as SMC’S for various loss of use. I know the caregiver stipend is for post 9/11 only and for injury and not illness but there are other ways to get compensation, don’t stop fighting. – Tricia R.
Thank God, my mother took out an in home health care insurance plan back years ago that actually pays for a family member to care for her. If we didn’t have that, to where I’m paid to stay home and care for her…we would be sunk! Best decision she ever made by far! – Rita J.
I took care of my sister the last three years of her life.. Her insurance company did pay me to take care of her, but I was only able to get paid one month out of the year because I was a family member. – Jennifer G.
I’m getting paid to care for my mom. I had to become a CNA and register with a state-approved agency first. We’re in Louisiana. 50 hrs/weekly. It’s through her long-term care insurance. Still, it’s working out well. – Ruby D.
Shared Living Provider
Here in Massachusetts, I get paid (tax free) to be a Shared Living provider to my special needs brother-in-law. MA also has a program to pay caregivers for the elderly (even their own aging parents). It is a win-win all around. Group homes (for special needs) and nursing homes (for elderly) cost the government a small fortune for each individual. The brother-in-law living in a MA group home costs the government approximately $300,000 per year. To care for my other special needs brother-in-law, I get paid $30,000 per year, tax free. Just look at that massive difference! Government saves $270,000 annually and I make a living wage. Win-win. – Kim N.
Personal Care Attendant
In Massachusetts if the ill individual is covered by Masshealth then there is a strong possibility of qualifying for the PCA program. They assess, and approve hrs and a wage and Masshealth will pay someone to be the personal care attendant. It is a God-sent! Spouses can not provide the care but they can oversee the caregiver. I don’t want anyone having the difficulty we did getting enrolled. – Tiffany L.
In-Home Supportive Services
In California, there is the IHSS program (In-Home Supportive Services) via Dept. of Social Services for low income patients. I received payment for taking care of my mom, and later on, my husband’s uncle. – Penny F.
California has IHSS. However, you have to have SSI or MediCal to qualify. There is a MediCal waiver but it only applies to the developmentally delayed. My son is blind so we don’t get it. – Kassidee R.
In CA it’s called In Home Support Services. My 95 yr old Mother has 2 caregivers and I am their weekend relief and standby in case they need a day off or sick. – Debbie M.
If you have a special needs/disabled child/adult you can. It’s called In Home Support Services and they don’t go by family income, Bill Gates could get it! – Shawna S.
I get paid to take care of my disabled daughter through a federal SSI program administered by the state and county; it’s called IHSS. Annie A.
In California we have In-Home Support Services. You have to be low income, which I became after Part D went into effect years ago. I have multiple sclerosis and have a caregiver. Family member should not feel guilty or greedy. If you have to leave a job or cut back on hours, know that there are resources to get paid. – Janice V.
We have a support program here in California, but please read and be aware of issues that can happen. We took in my 90 year old mom-in-law after a long hospital stay and rehab. She is now on hospice care. We had to shift our work obligations to accommodate her needs. We knew that IHSS in California would take a while, but we thought it would be more like a month or so. It has been over three months, as she had to re-qualify for the support program as everything established to that date cancelled because she was in a facility over a month (she had received IHSS benefits for many years up to now). When she is finally approved again, she can “hire” me to be her caregiver. At that point I wilI need to go through the process of being approved, trained and fingerprinted, which may take possibly (they said) another 6 to 8 weeks. Now I realize that can mean much longer and I can’t do anything about it ahead of time. The good news is Mom is doing wonderful here at home with us. Needless to say, we now have some challenges financially to make this work. We will make this work no matter what, but I think it’s wise for anyone considering using a support program to realize that a any support program has many steps to quality for and know that the pay is minimal. Although she will be compensated back to the time she was out of the hospital, it would have been good to know that payment might be as much as six months later. Maintain your work status, if possible, until the support resource is established. – Patricia C.
I am actually a Social Worker who works at an agency that reimburses Caregivers through Medicaid for caring for a loved one in Massachusetts. The company is Caregiver Homes and they are in Massachusetts, Connecticut, RI, Louisiana, Ohio, and Indiana. – Christina H.
Guardians of Children
Parents of disabled children living in New York can now be paid, as of April 2016. – Bambi K.
Talk with your tax preparer. I do know there are tax deductions for caregivers. The amount would be deducted from gross income and your taxes lowered by your tax bracket. – John W.
The only thing I am aware of is the caregiver amount we can claim on our income tax. – Anita K.
My mother does not qualify for any state funded program so she pays me herself. I’d love to do it for free but cannot. She would have to pay someone whether it was a caregiving agency or a nursing home, so why not me? Besides, I am much much cheaper! Been this way for 16 years and it’s worked out fine. I feel bad for others who cannot afford this. – Beth I.
The sad reality is that our society does not value the elderly, ill, or disabled enough to provide support for them or their caregivers.
This needs to change! We need and should have programs in place to provide care for our elders that are straight forward, easy to access and compensate the hardworking individuals out there who lovingly care for those that require caregivers. – William W.
We all need to speak up and demand that the government and the insurance industry stops relying on unpaid family members and starts stepping up to the plate.
Some comments have been edited slightly for clarity or grammar.
We hear it all the time — and I’m sure we’ve all said it, too — our society doesn’t value family caregivers.
It sure feels like we aren’t valued. Doctors refuse to share vital information with us, while they’re pushing more and more responsibilities on us — assuming we’ve got the time and the skills to be chauffeur, nurse, housekeeper, and errand runner.
But then there’s the stuff about how we’re saints and heroes. I personally find it cloying. I do not feel like a saint when I’m changing my grandmother’s diaper while she’s shouting for the neighbors to save her. It does not feel heroic to go to a dozen pharmacies in one day or spend hours on the phone to fix clerical errors. Was it my mission to be put on this earth to fill out insurance paperwork? I hope not.
Many of you feel differently and I’m not here to disagree or dissuade you. We each have our own calling, but the incredible number of people who find themselves responsible for the selfless care of someone else is so high I suspect this isn’t everyone’s reason for being.
Caregivers feel marginalized — are marginalized — despite how common we are. Why are family caregivers asked to give up months, years, or decades of their lives to care for someone else without any pay? The tremendous cost of caregiving leaves many family caregivers destitute, unemployable, and without a safety net of their own. Who will care for the caregiver when they need it? Even the most fortunate caregivers are not insulated from the emotional devastation.
It’s the ultimate insult to our disabled and ill loved ones that their care requires martyrdom.
Yet caregiving is seen as vital. A common synonym for family caregiver is natural caregiver. It is seen as natural that we give this much of ourselves, often without support. When my mother was unable to pick up her uncle after a medical procedure and his neighbors kindly volunteered, he was given access to home health aides, along with visits from a social worker and a nurse. When my mother was there at the hospital, it was simply assumed she would fill all of those roles herself.
When I saw the headline “Healthcare is a Business and Not a Right” I couldn’t resist the provocative title. The author, citing economist Robin Hanson, presents a compelling case for why people are so disgusted by the idea of people being billed for medical care. Caring for each other — from cooking meals for each other to helping someone work through a problem to watching after a child with a cold — all fall under reciprocal altruism. These are transactions that fall outside of the market system.
My father is not going to invoice me for giving me a ride to the airport. My mother is not going to present a bill for our lunches together. My best friend does not charge by the hour for the times I ask for her advice. My former professors don’t charge me for their mentorship, even if it was once a responsibility under their salaries. That’s reciprocal altruism. We support each other without a quid pro quo.
You can see how much society values caregiver when someone shirks their caregiving responsibilities. They’re vilified. Even providing care in a way that’s not acceptable — like putting your mother in a skilled living facility you’ve so carefully vetted and visiting her every day while finding a way to cover the costs — will get you snide remarks or open accusations of neglect.
Reciprocal altruism works just fine for a short-term illness. Chronic illnesses that are manageable work well, too. Yes, there is a cost of co-pays, out-of-pocket care, getting to and from appointments, and missing days of work. The community rallies around when someone falls ill or has a flare-up. Most of us weather this without major sacrifices. It feels like part of life, family, friendship.
The system falls apart when an illness is prolonged. The community does not maintain that rally for months or years. Your relationships suffer. The bills pile up. Friends drift away. You realize you cannot keep juggling work and care. You tap into your retirement. Then you sell your home. The bills keep coming. You grow increasingly isolated. You’re stressed to the point where taking care of yourself is not an option. Even the co-pays add up quickly. The medical supplies, the cost of parking. There are patchwork systems of support, but even the few who qualify for it find that it is not enough.
The question I hear most often is “How can I get paid as a family caregiver?” It is always couched in apologies, guilt, and shame. The explanations for why they do not want to ask for money for their time and sacrifices, but they are forced to.
When you get yet another bill for thousands of dollars and overhear someone else claiming “Their love is all the payment I need” it’s enough to make you lose it.
Our legal system and our society are set up for an age when the ill rarely lingered. When people with disabilities died as children. When the elderly were rare — having survived a gauntlet of accidents and illness — and could be cared for by women who weren’t permitted to work outside the home. Surely, we do not want to return to that age.
Our world has changed. Huge medical breakthroughs mean we can keep people alive longer — but no one has set up the systems to support them so they can thrive. We save them and then we send them home. This wonderful scientific advancement is creating it’s own carnage of people who aren’t being allowed to reach their potential.
The levels of care required are not natural. So many caregivers face a burden that is too great to carry on their own.
Unlike McArdle, I do believe healthcare is a human right. However, in a world where there are so few objectively right answers, she makes a powerful argument. If we all have the right to healthcare, why is it individual caregivers who are bearing the cost?
Thankfully, there are healthcare systems that are providing exceptional support for patients and their caregivers. Our Canadian community members rave about their experiences with Saint Elizabeth. Saint Elizabeth provides a full spectrum of care, from home to hospital.
Encouraging a support system
Did you catch the finale of Mad Men? Were you horrified when the doctor ignored Betty and spoke only to her husband? I’ve personally experienced hospital staff giving me all of the information — talking right over the patient. I’ve also had treatment teams refuse to include me in the discussion, even with the patient requesting I be involved. Neither option feels good.
Family centered care means finding out who the patient wants involved in their care and respecting their wishes. This eliminates the game of telephone and makes sure everyone gets the information they need to provide the best care.
Donna always reminds us that “caregiving is a job to be shared.” Saint Elizabeth provides their Tyze Personal Networks service free of charge to anyone, anywhere. This simple tool allows families and friends to share updates and information and schedule caregiving responsibilities. It’s an incredible tool to help communities work together to ensure the people we love get what they need — without everything falling on the shoulders of one person. It’s totally private and secure, so you don’t have to worry about personal information becoming public.
One important thing that makes Saint Elizabeth’s different is that they acknowledge the important role of all the caregivers in someone’s life. Those of us who provide intermittent support or who serve as long-distance caregivers need support, too, and Saint Elizabeth’s recognizes that.
Healthcare is intensely personal. Part of providing quality care is finding ways to make sure each patient, and their family, is as comfortable as possible with the help they’re receiving. This is especially true for home care, where a home health aid can feel like a welcome friend, or a stranger invading your space. The best situations are those where the professional caregiver starts to seem like part of the family.
After 100 years of providing home care, the staff at Saint Elizabeth understand that home care needs to be incredibly flexible to meet the needs of the families they serve.
Part of building real relationships with people is acknowledging their faith, whatever it may be. They’re currently expanding their chaplaincy program, which is privately funded through their foundation.
Answers when you need them
As much as the staff at Saint Elizabeths recognize that patients and caregivers quickly become experts in their health, there’s no replacing certified professionals. Natalie Strouth, a nurse and information specialist, runs Ask Elizabeth, a telephone hotline and live chat where anyone can get answers to the questions that come up. Her career as a frontline nurse means she’s ready to provide guidance for a wide variety of situations. While Saint Elizabeth serves residents of Ontario, Alberta, and Nova Scotia, they’ve gotten calls from people all over North America.
Natalie also has a Huffpost column providing answers to common issues faced by caregivers.
Not just trusting your instincts
If you’ve heard about the Caring for Caregivers Resource Centre, you’re already familiar with the work of Saint Elizabeth. There’s so much information out there; they’ve done the research to uncover what really works and help the best ideas spread. They provide in-depth information with caregiver-focused assessment tools and guidance. Because no one organization can be the leader in every area, this program encourages support and education programs to work together and provide a stronger network of comprehensive support.
Anna Renault had a severe reaction to a medication to control her chemotherapy side effects, sending her to the emergency room with anaphylaxis in 2009. The bill for this life and death situation was rejected by her insurance company.
Somehow, her treatment was being billed as having been for the flu, which Blue Cross/Blue Shield felt did not qualify for emergency treatment. Luckily for Anna, she’d requested a print out of the diagnosis and treatment as proof of her allergy. Her health insurance company eventually paid the claim in full.
When she received additional cancer treatment last year, her claim was rejected by Medicare because they claimed she had an open workers compensation case for Black Lung. Only Anna didn’t have an open workers comp case…and she certainly didn’t have Black Lung. Her employer provided paperwork, but that wasn’t enough. Anna recalls, “I had to get letters from my primary care, lung specialist and oncologist to submit to Medicare proving I did not have Black Lung.”
Many patients are billed for treatment that should be covered by insurance, often because of simple typos. Even when a patient has obviously been billed in error, they will often give up and pay out of pocket after a few failed attempts to clear up the charges.
Samantha Markovitz of GraceMark Wellness & Lifestyle Coaching knows the hassle of dealing with health insurance. “As a person living with type 1 diabetes, I have had more than my fair share of claims denied by insurance. I have learned that arming myself with knowledge and patience can make the difference in whether I can eventually get the claim decision overturned.
Sarah O’Leary is the CEO/Founder of Exhale Healthcare Advocates. Individuals, families and small businesses hire Exhale to help them successfully manage all of the business aspects of their healthcare. Exhale doesn’t sell insurance, so they’re unbiased and independent.
How to dispute a health insurance claim
Sarah shared the steps for what to do if an insurance claim has been denied in error:
Know the jargon
You have to know what all of the terms mean to fully understand what your policy is responsible to pay. To work with the insurance company, you have to speak their language.
Check your EOB
Your Explanation of Benefits is provided by the insurer against your medical bills. Between 50% – 80% of all medical bills contain errors. The denial might be a result of miscoding by the healthcare provider. In that case, you need to go to the healthcare provider to have them resolve the mistake and resubmit the claim.
Question the denial
Call the insurance company and ask for a detailed explanation of why the claim was denied. Ask for a manual appeal of the denial. Without requesting a manual appeal, your decision could be made by a computer. Don’t be afraid to ask to speak to a supervisor. They often have more information than those on the front lines. Be persistent. If you believe that you should have been covered, you’ll need to fight.
Getting your claims paid
How can you make sure your health insurance policy pays your claims? Teri Dreher, president of North Shore Patient Advocates, a patient advocacy agency based in the Chicago area, has these tips:
Know Your Policy
Learn the terms of your coverage before you seek medical care, so you can avoid legitimate claim denials, like using an out-of-network provider.
Keep a Detailed Log
Every time you call your carrier regarding a claim, record the date, the names of the people you speak with, and exactly what was said. Keep copies of all written correspondence. A detailed record can make a difference.
Be Patient and Polite
Assume that this will take time, that you’ll be transferred around and put on hold. No matter what, don’t be confrontational or rude. It can hurt your case.
Have Your Details Straight
Before you call, review the facts of the case. Have your policy number and claim info handy. Being organized makes you more credible.
Ask Your Provider for Help
Carriers don’t always have the right facts. Asking your provider to submit more detail or reword their submission can make all the difference.
Educate Yourself about Your Condition and Care
You’re no doctor, but in order to advocate credibly for yourself, you may need to be able to explain why a disputed treatment was medically necessary.
Don’t be afraid to appeal repeatedly. Some experts believe that carriers bank on the fact that most insureds will give up along the way, saving them money.
Some companies will do the legwork for you. If you require complex medical care that involves expensive claims, you can always turn to a professional patient advocate like Teri for help. A critical care nurse for 30 years, Teri now serves as an intermediary between patients, providers, and insurance carriers.
Ardina will manage insurance claims and medical bill negotiation. An Ardina membership gives you access to HealthAdvocate. Hoa-Lisa Pyles McManus said “I just call their 1-800 number and a personal health advocate will handle the insurance claim and medical bill negotiation. They really took the stress out of the process.”
Why do healthcare advocates succeed where caregivers fail? Sarah explained, “Frankly, we get treated differently than patients do by healthcare providers and insurers because our experts are professionals from the industry. Most clients come to us after they’ve tried for months and failed.”
We focus exclusively on providing content by, for, and about caregivers.
You’re a caregiver if you…
are supporting a loved one through an acute illness, like cancer
are supporting a loved one in recovery after an accident
provide support for a loved one who has a chronic illness or disability, like diabetes, mental illnesses, or autism
help an elderly relative or friend with household chores, the bills, and other tasks
are a professional caregiver in a home, nursing home, hospital, or other facility
volunteer to support the ill, disabled, or elderly
have ever done any of the things mentioned above
We welcome a wide variety of artwork and writing for publication on The Caregiver Space
Some of our authors are experts because they have degrees, certifications, and professional experience. Others are experts through lived experience. Many have both. We’re interested in honest stories with strong voices.
This is an inclusive space. We welcome all viewpoints and share stories that reflect a wide variety of opinions and beliefs. We each share our personal story without tearing down others. Your voice is welcome here.
Remembering to take medications goes way beyond remembering to take a pill in the morning and one before bed. We’ve got charts on the fridge or spreadsheets or notebooks to tick off which medications get taken when — and which ones they’ve actually taken. You don’t want anyone to accidentally take their medications twice.
There’s got to be a better way, right? Well, there is. It’s Medisafe, a medication reminder app.
If your loved one struggles in managing their medications — with a little help — this could be the perfect tool for you.
How does Medisafe work?
Patients download the app and can connect with their caregivers, whether it’s a family member, a friend, or someone on their treatment team. They get notifications when it’s time to take their medication. If they mark that they’ve taken it, they’re all set. If they ignore the notification, their family member gets a notification and can check in with them.
There’s no need to type in medication information. You can get your medication information straight from your clinic by connecting to your patient portal. If your clinic isn’t on the list yet, , it’s easy to add things manually. Naturally, Medisafe is 100% HIPAA compliant.
Medisafe works with caregivers, by letting us know when a dose has been skipped or taken improperly. It also:
provides helpful reminders on when it’s time to order a refill
keeps track of doctors appointments
monitors health stats, like glucose levels
provides personalized information
share, email, or print records for your family or doctor
Medisafe also provides you with instructions on how to take medications, potential side effects, safety information, and other helpful things to know about the medications your loved one is taking.
Medisafe also keeps track of medications you take as needed, like Tylenol. Because certain medications might also contain Acetaminophen, it’s easy to accidentally overdose. Medisafe will help you keep track of these meds.
Know what’s working — or not
The simple charts in the app make it easy for people to see their glucose levels stabilize or their blood pressure fall within the normal range — making them more likely to continue taking their medications, because they can see them working. You can import information from wearable devices or pull it in from Apple’s Health App or Google Fit.
Of course, Medisafe isn’t for everyone. The person you’re caring for needs to be comfortable using a smartphone and able to reliably report what medications they’ve taken. If that doesn’t describe the person you’re helping, there are plenty of other medication management tools out there to help.
The list of things that need to happen when a loved one is diagnosed with a serious illness is huge…and keeps changing. There’s so much research to be done, doctors chosen, appointments scheduled, records requested, insurance disputes, disability claims, trips to the pharmacy, someone to pick you up after appointments. Your life is taken over by the endless task of coordinating care.
When I ask caregivers how we can better support them, the answer is always ‘come clean my house.’
The laundry keeps piling up, the dog still needs to be walked, the utilities need to be paid, the kids still need rides to parties and someone to make dinner. What about work? How are you going to pay for all of this?
Ashley Reid founded Wellist to help you shorten your to-do list. Wellist helps your support network take over the little things so you can focus on what’s really important.
One of the biggest issues faced by family caregivers is that you don’t know what other people can help you with — and people who want to help you don’t know how.
This not knowing what to do makes things more stressful for everyone — and can have serious consequences. A strong social network of family and friends provides patients with a level of care that can’t be matched by social workers and home health aides.
Wellist addresses those factors two ways: by connecting caregivers and patients to reliable service providers and helping them get the financial support they need.
Caregivers don’t always know what they’ll need until they need it, leaving them to scramble to find service providers. Doctors are restricted from recommending for-profit services, so patients and caregivers are left to wade through listings on their own. Wellist solves both of these problems by helping patients and their families understand what services they might need and providing verified listings with reviews from other patients.
Once caregivers have figured out what services they need, there’s still the matter of paying for it. Wellist makes it easy to share a list of the services needed so friends and family can make donations. All of the money donated — 100% — goes directly to the patient.
Covering the cost of parking or make sure groceries get delivered is something that’s easy for loved ones to chip in for. People want to help and are happy to know what you need. And it’s one less thing for you to worry about.
You want to choose a retirement community, either for an older relative or for yourself and your spouse. The number of options are staggering — and there are so many different amenities and pricing structures. Sure, there are paid services to help you choose or directory companies, but they only recommend companies that have paid to be listed.
Bojana Nedic worked with seniors who had recently been discharged from restorative care. Not all of her clients were able to move back home to age in place — they needed a new place to call home where they would be safe, comfortable, and happy.
Bojana and Andrew Colterjohn found themselves making a detailed list of retirement home options in Excel. They realized there had to be a better way. That’s when they founded Pearl’s Choice.
The goal of Pearl’s Choice is to make sure people are confident in their choices. When people are given a comprehensive list of the options and the tools to sort through them according to their unique needs, they know they’re making the right decision.
Pearl’s Choice is an online tool, but users can create custom printouts showing details for their top choices.
Growing old seems to sneak up on us, even though it’s an inevitable part of life. When’s the right time to start talking to family and friends about retirement home options?
As early as possible. Really, whenever the idea begins to enter your thoughts. Becoming comfortable with moving into a retirement community is difficult for some people who might think that they will lose their independence while others might welcome the opportunity to live with less responsibility around the house.
The most important point to stress is that retirement homes come in many different “shapes and sizes”. What I mean by this is that one home could “fit” you better than the other. So the sooner you start to identify what’s important, the sooner you begin to understand the costs associated with retirement living and the more prepared you will be when you are ready.
Part of what makes choosing retirement homes so difficult is that adult children often find themselves making decisions for their parents. How can parents and children work together to make the right decision as a family?
It’s so normal to feel uncomfortable entering into these conversations with your loved ones. However, the best option is to begin the conversation before a move is necessary. If there isn’t a sense of urgency, you’ll have more time to explore your options.
I suggest that the [adult] children should do some initial research about retirement community options in order to get the conversation rolling. A good example would be letting your parent know that weekly housekeeping and laundry services are included in most base rental fees – how great is that!
Don’t shy away from discussing the negatives as well; being realistic is important and it will ensure that your parent is well-prepared for the change. Let them know that you want to make the decision an experience and book tours around lunch or dinner-time in order to enjoy a meal together.
Those of us who are addicted to Yelp and Trip Advisor know how helpful real reviews can be. What steps do you take to make sure reviews are accurate?
All of our reviews undergo a 48-hour vetting process. Meaning that no review “goes live” until our team has verified the users email address. If the email checks-out and the review is positive, we will post it for the public to see. If there is criticism or negative review, we will contact the home to verify that the individual who wrote the review has actually experienced life at the residence.
It’s important for users to know first-hand what life is like candidly from people who have actually lived there. We believe it’s also important for retirement home operators to learn from their potential or current residents what is happening at their home, this way they can continue to improve.
If a user alleges any sort of criminal activity or elder abuse, we take the conversation offline and involve the appropriate authority.
Many people think putting their parents “in a home” is the worst thing they can do. How can family members be reassured that retirement homes provide greater independence for relatives who need support?
Today’s retirement communities are not what they used to be! The residents get to enjoy living in a community of their peers, a fully scheduled social calendar, transportation and have the peace of mind that meals and housekeeping are taken care of.
For those who enjoy cooking for themselves, many communities offer apartments with mini or full kitchens, so you can continue to cook some of your own meals.
I can’t emphasize enough how crucial it is to understand what’s important to you and that way you can find a home that accommodates your unique needs.
Those of us who’ve had loved ones living in residential care facilities know that family caregiving responsibilities continue. What can family caregivers expect when their loved one moves into a retirement home?
To become an advocate and a care partner. Your responsibilities as a caregiver might be lessened but it’s still important to understand what’s going on in the community.
Asking both the staff and your loved one questions about their day-to-day routine will help you understand what life is like. Keeping an eye on the cleanliness of their suite and the common areas will be important.
If you are receiving assisted living services, you’ll want to ensure that medication is being properly managed and the care you are paying for is being given.
It’s also important to take advantage of the new surroundings and begin enjoying time with your loved one in their new environment. Join them on a day trip or attend an event together. Sit and read with them in the library or play a game of chess in the common area.
Many retirement communities even have private dining rooms for rent – this way you can bring your next family function to your loved one!
Right now Pearl’s Choice has profiled nearly 1,000 retirement communities in Canada. Do you have any plans to expand to the US?
We’re focusing all of our efforts on Canada right now because we want to learn the exact needs of Canadian families and retirement community operators. We do have plans to begin providing support in America, but we want to be sure we’re doing it right, at home.
Kinsights is a site that connects parents — and is a fantastic resource for parents of children with special needs, disabilities, or illness. Kinsights also stores important medical information and records, making it easy to keep everything organized and have fast access to it when you need it.
Jennifer Chung, Kinsight’s founder, was kind enough to chat with us:
What sparked the idea of Kinsights and what do you think is the most essential part that has made your company such a success?
The idea was born from Dr. Carol Wilkinson’s experience as a pediatrician (she is the Kinsights Medical Director) – she saw that parents were often coming to appointments with lists of questions, but many of their concerns could be addressed in a more relevant, actionable way by other parents who share similar experiences. But there weren’t great alternatives to facilitate these interactions between parents. Parents would often turning to busy and cluttered parenting forums, where the information can often be confusing or misleading.
We take a very different approach to the parent experience within our community. As a parent uses Kinsights, we’re able to better understand their interests, health concerns, content preferences, whose opinions they value, where they need help, and how they can help the community.
When a parent poses a question, we’re able to identify the subset of parents who are most able to provide guidance. For example, the parent of a preemie with cerebral palsy dealing with separation anxiety can get advice from a parent who has experienced with the same combination of concerns. And quality matters – the community votes up thoughtful, thorough answers and the questioner selects the answer that best addresses his/her needs.
Can you tell me more about your personalized matching system? And the private groups?
We leverage a unique relevance engine to connect our users to the right groups of parents – so whether you are dealing with a medical condition or seeking recommendations on local schools, we can find parents within our network that have local and/or topical knowledge and experience. We can also recommend resources and support groups, based on your profile, interests, and concerns.
We partner with organizations – parent groups, non-profits, and employers – to create customized communities within our platform. Some of these are public groups that our parents can join, and others are completely private groups, only accessible to their existing community.
Kinsights wasn’t created specifically for kids with serious health conditions, was it? How did special needs and acute care become such a big draw for people to your community?
Kinsights was created to serve all parents – whether you were dealing with a behavioral issue, needed help finding a school, or have a child with a medical condition. As soon as we launched a tool for parents to start their own groups, parents started creating support groups for their child’s condition. What we’ve found is that parents of children with rare or complex medical conditions often have a day-to-day need for a community of parents who have truly been in their shoes before, as they navigate the social, emotional, and healthcare challenges their family faces.
How does Kinsights work if a person’s medical records are currently on paper? Can users sync their Kinsights account with their doctor’s office?
Parents enter and track data on their child’s health, and we make this process extremely easy – we use industry-standard vocabularies in the background and an incredibly intuitive, easy-to-use interface that enables parents to track problem lists, medications, developmental milestones, immunizations, and more. We’re starting to collaborate with a few partners that will facilitate data entry from paper records into our health record.
Kinsights seems like a natural extension of the quantified self movement. Is that accurate?
In some ways, yes, in that we help parents track data on their child’s health – but we focus heavily on the actionable end of that data. For our parents, health data provides some initial context – and as a parent uses Kinsights and engages with the platform, we’re able to better understand their interests and needs, so we can surface relevant content and community members.
Do you have a personal story you’d like to share with us about your connection to healthcare and caregiving aside from your scientific, clinical and professional endeavors?
I’m part of the sandwich generation – I have a 4-year-old son and parents in their late 70’s. Luckily, I have two sisters and we often split up responsibilities and check in with each other frequently. Connecting with other adults who are feeling pulled in both directions has been incredibly valuable for me – most of the time I just need a patient ear, but sometimes I also need well-researched advice. In many ways, Kinsights serves that same purpose for parents all over the country.
What is the main takeaway you want readers to know about the goals and mission of Kinsights? Is there any advice you can give to caregivers?
The connection between parent mental and emotional health and outcomes for children has been demonstrated in studies across multiple pediatric conditions. Traditional online communities can address the need for an emotional connection, but they are often the gateway to information overload. Kinsights facilitates those peer-to-peer connections, while providing smart filters that improve both the quality and relevance of interactions, so that parents feel supported instead of overwhelmed.