[Editor’s note] While it seems a little inappropriate to share, this article raises some good points. Many people think of death as black and white — you’re alive or you’re not — those of us who’ve been around death know it’s not quite so simple.
Sometimes the dying process can be a difficult and lengthy one. Just how do you determine when someone is no longer alive?
Before a body slides into a morgue or is lowered into a grave, how can we know if someone is really dead? As medical science advances, the guidelines to determine death have changed, too. Miracle Max from “The Princess Bride” once assured us that “there’s a big difference between mostly dead and all dead.” It was… (more…)
One of the hardest challenges I experienced in caring for my father was helping take care of him when he was hospitalized. His memory got worse and his confusion was heightened being in a new setting. He suddenly became aggressive and agitated and had to be temporarily restrained which increased his agitation even more. I felt helpless and heartbroken.
It is not unusual for seniors to find themselves facing some type of medical problem due to a medical condition or accident that requires hospitalization. When you add that condition to someone who already has memory loss or confusion the need for specialty care becomes elevated. The first thing to do is understand why a hospitalization can trigger these types of reactions:
- They may be in pain or uncomfortable because of the medical problem and not understanding why they are in the hospital. They may have to undergo medical treatment like x-rays, injections, IV’s, catheters, that can be very frightening and painful.
- Their regular routine has changed and they may be unable to sleep in a hospital setting causing more confusion and fear.
- They are in a new place with hospital staff that are strangers coming in their room all hours day and night which can be very frightening and confusing.
- Delirium, or sudden mental confusion, can occur with a hospitalization. It can be triggered by an infection or extreme stress. Even people with no memory issues can suddenly have an altered memory status.
Now you have an understanding of what the potential reasons for enhanced memory or
behavior problems are. It is important to note there are concrete steps you can take to help
manage these problems or at least try to reduce the severity and longevity:
Work With Hospital Staff at time of Admission
The hospital staff needs to understand what your loved one’s baseline memory and functionality is so they can act quickly if changes are noted.
Have a Familiar Family Member Spend as much time as possible with the patient
Having someone your loved one knows be close by to help advise staff and calm the patient is very important. Just seeing a familiar face can reduce agitation and anxiety.
Discuss Hospital Policy on Management of Patient with Aggressive Behaviors
Talk to a doctor and hospital staff about what they recommend when these instances occur and patient and staff safety become problematical. They may suggest restraints or medication that can calm the patient. Make sure you are OK with the plan. Do you want to be contacted if this occurs? Are you against the use of restraints? Ask about other options like a sitter or an alarm.
Consistency of Staff and Routine
Request that your loved one has the same nurse, nurses aide, or other staff when they are working. Having people a patient is familiar with can reduce the incidence of behavior problems or enhanced memory issues. Also having the same routine every day can be helpful. For example meals and physical/occupational/ speech therapy sessions at the same time can help orient a patient.
Placement of Patient
If your loved one is disruptive have him/her in a room closer to the nursing station and without a roommate. This helps ensure staff will be more attentive as issues arise. Not having a roommate disrupts the frequency of unfamiliar people coming in and out possibly causing regressive tendencies.
Visual and Verbal Reminders
Try to have a clock and calendar visible to help orient your loved one. Have photos of family members with names on them. When visiting, speak softly in short sentences identifying who you are. Be in front of the your loved one by their face so you can be seen and they are aware you are there. Hospital staff should be advised to also use these techniques. Remind patient’s why they are in the hospital. Refer to your loved one by name or relationship, i.e.. “Dad this is Iris, your daughter.”
Use Calming Techniques
Using a smile or gentle touch can go a long way to calming an agitated person.
Don’t dispute or argue about what they are saying. Instead try to understand why they are saying it. My father told me he saw a cow outside his hospital room. Rather than discounting it I looked out his window. I noticed a piece of construction equipment that was oddly shaped and looked like it might have horns. I asked him if that was the cow? It was. Use reassuring words. If they seem worried about something ask why.
Don’t try to rush them into doing something. Allow time for them to prepare and explain what is going to happen in understandable steps. Offer reassurance that you will be there as things that might cause anxiety will be happening.
Bring Familiar Items from Home
If your loved one has a special pillow, blanket, clock or photograph, bring it to the hospital. If they like specific music, use that as something to do together during your visit. If they wear glasses, dentures, hearing aids make sure they are there because that can help with communication and orientation. Things can easily get misplaced or disappear from a hospital room so keep track of where they are placed as much as possible.
Good communication is a key component in making the hospital stay go as well as possible. Make sure that information about your loved one’s deficits is placed in their chart, their care plan, and if there is a board in the hospital room for special care instructions place it there. Also you can write this information on a piece of paper and hang it on the wall near their bed. If you see new staff working with your loved one, make sure they are aware of any special concerns or care needs. These steps can bring peace of mind and lessen anxiety for all concerned parties.
Family caregivers have to go through a lot – giving care to a loved one can be frustrating, difficult, and heartbreaking. And that’s just normal, day-to-day life – things can become harder when a catastrophe happens, like a sudden fall or other critical, life-threatening injury.
Because of this, even family caregivers who live with their loved ones should be taking steps to help the one they’re caring for stay safe and avoid injury – especially in the bathroom.
The bathroom is the #1 place where elderly people fall – clocking in at 35.6% of all nonfatal falls in the elderly. Because of this, it should be one of your first priorities when it comes to the safety and security of the loved one you’re caring for.
We’ve put together a list of 5 of the easiest ways you can help secure the bathroom for your loved one, and help mitigate the risk of a disastrous fall. Check them out below.
1. Install Grab Bars
Grab bars are one of the simplest and least invasive precautionary measures you can install in your bathroom – and they’re quite inexpensive. These bars allow your loved one to have a solid surface to hold and grab, whether they’re just looking to keep their balance, or attempting to prevent a nasty fall.
Typically made of stainless steel or another high quality, sturdy material with a grippable synthetic or rubberized surface, grab bars are absolutely essential – and not just in the shower.
A greater majority of falls in the bathroom occur on the toilet – not the shower. Because of this, grab bars should be installed both in the shower, and near the toilet, where they can offer aid to your loved one when they’re attempting to sit down on the toilet, or stabilize themselves when getting up.
2. Prevent Slips – And Remove Trippable Rugs
Slipping is another huge cause of falls in the bathroom – a tiled surface with water or a shower without some kind of rubberized mat can be a huge risk to an elderly person who lacks balance or strength. Any surface that’s a risk should have a rubberized mat installed, with proper steps taken to ensure that the mat will not slip itself, and can drain water and other fluids away easily while maintaining a grippable surface.
Making sure that all rugs, mats, and non-slip surfaces are secured is incredibly important, as unsecured rugs and mats are another huge cause of falls. Think about it – your loved one will never assume that these items are out of place, so even the slightest movement or upturned corner could be enough to trip them up.
Remove dangerous rugs and mats, then replace them with secured rubberized mats that are non-slip, and won’t move around or turn up at the corners.
3. Pay Attention To The Toilet
As mentioned above, toilets pose an even greater risk than showers when it comes to accidental falls – this is due to the fact that they are used more often, and usually not perceived as risky – whereas most elderly people know that showers are slippery and could pose problems, and thus are alert, the toilet is viewed as an everyday necessity that’s not as dangerous, which can put them off their guard and cause accidents.
Besides grab bars, consider other safety equipment for toilets – items like raised toilet seats can be very helpful, as they integrate side-grip bars with a high-profile design that minimizes the time that the elderly spend trying to balance and sit on the seat.
Toilet safety rails can also be considered if the design of a bathroom precludes grab bars – these devices consist of two large, sturdy safety rails anchored to the side of the toilet, and allow for increased stability when attempting to stand up from a seated position.
4. Take A Second Look At The Shower
Once you’ve put in grab bars and non-slip mats, you may think the shower is totally safe, but you’re not quite there yet.
Exertion can be a problem when it comes to showering – the elderly are more likely to tire out physically, which can be an issue when combined with hot temperatures that their bodies are less suited to mitigate. Because of this, it’s recommended that further safety precautions be taken, beyond mats and bars.
Reorganizing the shower can be important – everything that your loved one needs during a shower should be accessible without moving or reaching – this can lead to catastrophe, even with grab bars and mats.
A shower stool may also be a good investment – combined with grab bars, it is rather simple to sit down and get up on these non-slip stools as necessary, adding safety and autonomy to the shower experience.
Another problem can be getting in and out of the shower – the steps necessary and the awkward balance required to swing a leg out of a bathtub or high shower can be extremely dangerous. To help mitigate this risk, shower steps can be used – these non-slip devices allow a higher step profile, and allow the user to descend more gradually.
If even that is too much of a risk, you may consider a walk-in tub or shower – while expensive, these specialized designs are very friendly to the elderly, allowing easy entrance and exits.
5. Improve Visibility
This is often overlooked – but the elderly tend to use the bathroom more, and tend to wake up multiple times at night to urinate.
This can be extremely dangerous, depending on the lighting conditions in your specific home, but these risks can be mitigated somewhat by night lighting running from the bedroom to the bathroom, or even motion-sensitive lighting in the bathroom.
Even the most alert elderly person may trip or fall if they can’t see what they’re walking on, so it’s essential that this risk is mitigated, especially in the already-dangerous bathroom.
Mitigate Risks, Maximize Safety and Autonomy
It may be embarrassing to discuss the details of bathroom safety needs with your loved ones, or the ones who you’re giving care to, but it’s absolutely essential. Even just one fall can lead to poor health outcomes and long recovery times, so catching these problem areas before an accident is absolutely essential.
Don’t delay. Take a deep look at the bathroom, figure out what steps need to be taken, and ensure the safety of your loved one, and help them regain more control and autonomy.
As Our Loved Ones Age
All things considered, aging is a natural process that affects our daily living and self-care. We recognize that with old age, many problems and disease condition set in, making it difficult for loved ones to carry out their basic activities of daily living, also referred to as ADL.
Some of ADL that become challenging with aging and illness are:
- Personal grooming
- Moving in and out of bed or chair
- Climbing stairs
- Maintaining a safe environment
Instrumental Activities of Daily Living
Health experts have categorized another group called IADL—these complex activities require some expertise and decision-making skills:
- Using public transportation
- Handling medical emergencies
- Taking and preparing medications
- Finance management
- Social activities
Knowing When We Need Help
Regrettably, as our loved ones are affected by various illnesses, they often find it difficult to carry out their daily routine tasks.
Seeking some form of help from family caregivers or a professional in-home service, can provide much needed relief and support. Let your loved ones manage their lives as long as they can.
The idea is for your loved one to live an active, productive, healthy lifestyle as long as possible. There are tools and exercises to maintain and increase their independence and support both ADL and IADL:
- Occupational therapy
- Strength training
- Balance exercises
- Brain games
- Ergonomic equipment and devices
In occupational therapy, our loved ones learn to exercise on a regular basis in order to maintain their functional independence. This refers to one’s capacity and capability to carry out their daily activities with minimum help from caregivers.
Furthermore, the lifelong benefits of exercise, strength training and balance exercises on a regular basis can ensure our loved ones enjoy lifelong benefits, and continue to independently handle their daily activities with ease.
4 Basic Necessities
Our loved ones should develop the habit of exercising regularly and continue with the practice. As well as helping them carry out their ADL, it will enable them to stay active. Exercise and occupational therapy are more of a necessity if our loved ones are frail. OT can significantly reduce their dependence on help from others.
Prospective memory is a form of memory that involved remembering to perform a planned action or recall a planned intention at a future point in time and successfully carry our these instrumental activities. I’ve found, in my practice, that brain games significantly improve prospective memory and IADL.
Some Brain Games to Try
- Memory Card Games
- Computer Applications
- Board Games
In general, the more enjoyable the activity, the easier it will be to get your loved one to try it. Sensorial stimulation can increase their ability to remain mentally independent. Each activity should be tailored to their abilities and interests. Keep their hands exercised, strong and limber. It will make it easier for them to do so many of the activities listed above.
Equipment and Devices
- Canes and Walkers
- Grab Bars
- Raised Toilet Seats
- Special Eating Utensils
- Ergonomic Writing Pens
- Magnifying Glass
- Hearing Aids
In conclusion, figuring out your loved ones difficulties before there is a problem can make independence a lot easier for them and for their loved ones.
- Practice ambulation. Use a cane of walker to maintain their balance when needed.
- Install grab bars throughout the house—in hallways, the kitchen and bath for stability.
- Purchase special eating utensils for proper control
- For loved ones with arthritis, there’s a special pen that will ease difficulty writing.
- Purchase a magnifying glass to help them see more clearly.
- See a doctor to be fitted for a hearing aid.
Are you thinking it’s time to schedule a family meeting to talk about your aging parents?
Don’t do 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.
Don’t make it awkward
Any time someone tells me “we need to talk” I feel a little panicky. Don’t make it more awkward then it has to be.
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.
According to the National Alliance for Caregiving, nearly 20% of the U.S. adult population has taken on some form of family caregiver duties. Not only does full-time care demand time and resources, but it is evidently harmful to the health of the caregiver.
In fact, one study shows that healthcare costs for caregivers rise as their loved ones continue to decline. Even after the caregiving ends, the immune system can take up to three years to fully recover from the stress and strain of caring for a loved one.
Anyone who’s flown recently knows these familiar words: “In the case of a sudden descent, oxygen masks will fall from the overhead compartment. Please secure your own mask before helping others…”
With a little modification, this pre-flight advice may just save you from burning out: Before you care for others, please take care of yourself. If we’re going to be at our highest level, it’s critical that we take care of ourselves even as we care for our loved ones.
In this article, we want to briefly overview three essential ways to do just that.
1. Engage Family & Social Networks
As a full-time caregiver for elderly or disabled loved ones, you’ll want to tend towards isolation. After all, in home care can demand virtually all of your time, energy, and money. At the end of the day, the last thing you’ll be concerned with is keeping up your social life.
To combat this tendency, make it a point to reach out to family and friends. Additional support from your community will be crucial at every stage of this journey. Communicating with the outside world on a regular basis will keep you from becoming lonely and disconnected from the world.
2. Mind Your Own Health
As we saw above, caring for another can paradoxically take its toll on your wellbeing. One of your primary caregiver duties must be to preserve your own health first.
A nutritious, well-balanced diet will be crucial for keeping you in top condition. Regular exercise will not only boost your health but will help manage the heightened stress levels that come along with full-time care.
Naturally, adequate sleep will be vital to reducing caregiver stress and managing the physical demands of care. Be sure to check in with your primary care physician regularly as well.
3. Take Advantage of Specialized Support
There are more resources available to full-time caregivers today than ever before. Online, you can find information on everything from healthcare planning to end of life support. You can even join online community support groups to learn from others’ experiences.
You also need to connect with living, human beings in the real world. Websites like the Alzheimer’s Association provide listings of local support groups. You’re carrying a heavy burden. These groups will help you to connect with and be encouraged by people who know what you’re going through.
Finally, don’t be ashamed to take advantage of various respite care options. Whether you hire a nurse to come into the home for a break or you can make use of an adult day care center, respite care will provide you the break you need to regroup and take care of life’s everyday concerns.
Your caregiver duties will demand more than you ever knew you had to offer. Look after yourself along the way and be amazed at just how far your body will be able to sustain you as you care for your loved one.
By Adinah East, VP Quality Improvement, Caring People Inc
If you have a loved one who is aging the issue is not if but when a time will come that additional help may be needed. In my experience as a medical social worker and a caregiver for my parents I know this is a conversation that is very difficult to initiate. Nobody likes to talk about aging, illness or death. Let’s be honest, this is something we all will face. This conversation involves tackling tough topics:
- Getting sick and not being able to care for yourself.
- What do you want done if you are unable to make medical decisions for yourself.
- How do you feel about aging and eventually facing your own death?
- What insurance or money do you have available if you need additional help?
- Is it time to leave the place you have called home?
- Is your will or healthcare power of attorney properly completed?
You want to start this conversation from a place of love and caring. It also has to be a collaboration. You also have to start slowly and be aware that it is a process. This will not be one discussion but a series of talks over time as circumstances change and new challenges may arise.
There are things you can do to help it go as smoothly as possible:
Begin the conversation when your parents are alert and healthy and can make decisions from a competent place. They will be more comfortable and less defensive having this discussion when there are no current problems or deficits.
Wait for an Opening or Create One
Move slowly. Mention a friend whose parents are ill or that you are updating your will. Suggest that it got you thinking about your mom and dad. Ask if they have thought about aging and what they would want to happen? What kind of help would they want and from who? Would they want to remain at home or consider moving to a place where more support might be available?
Share the reason you are wanting to talk about this. You want them to be safe, prepared, and understand what options are available for them. You are not angry at them and don’t believe they are incompetent if that is true. Tell them you want them to continue to have as much quality in their life as possible and you want to contribute to make that happen.
Make sure the time you initiate this discussion is optimal. Don’t do it when you have to leave in half an hour. Do it when there are no distractions or additional people that don’t need to be a part of the conversation. Don’t include too many people because that may make your senior feel more defensive. Choose a stress free time to initiate this talk.
If you have a good relationship with your parents than you may be the ideal candidate to initiate this talk. If not you may want to include a trusted family member friend, doctor, priest, neighbor, that can help your loved ones feel more comfortable about addressing these sensitive topics. If you are doing this with someone else you may want to meet ahead of time to plan on what direction you want the conversation to go and who will play what role. Rehearse what you want to say and try to anticipate their responses. Make sure the message you give your parents with someone else is a unified message.
Choose the opening topic
You don’t want to throw out all of these major questions at one time. That will feel overwhelming and cause any future discussion to derail. Pick the topic that you believe is most relevant to them and one that your parents will be most open to.
Maybe they just came back from a doctor visit. You can use that as a place to begin to address questions about potential health concerns. If you know they are feeling their home is becoming harder to maintain that gives you an entry way to ask about what their thoughts are about the next step if the house becomes increasingly hard to manage.
Some Final Thoughts
If the conversation does not go well don’t be discouraged. A process has begun that you can return to and reference at a future date. Take notes about what has been said. Perhaps you can all agree on a future time to set including whatever requests your parents make regarding the parameters. Maybe the participants can agree to gather information to facilitate the next meeting. Ask your parents if there is someone else they would like to attend future discussions.
Try to remain empathetic and compassionate with each other as you enter this uncharted water. If it is clear you need an impartial mediator to manage the discussion you might want to get a geriatric care manager. They can be found at aginglifecare.org.
Finally, be patient. This is new territory for you all. When a parent agrees to work through these issues, there is no greater gift they can give you.
In this guide, let’s look at ways those with disabilities can stretch their dollars. The purpose here is not to portray anyone as “less than” or “needing special help.” For us, the bottom line is “If you can save money, why not do it?” We just want to make sure you know about the options.
There’s one thing we know for sure: people like Jon Morrow, Joni Eareckson Tada, Stephen Hawking, and so many others, prove that a disability doesn’t mean “incapable.” Not by a long shot.
Discounts, Services, and Special Offers Available to People with Disabilities
Here’s a two-word tip that can save you hundreds or thousands of dollars every year: Always ask.
Businesses typically instruct their employees to refrain from suggesting discounts. That’s not because they don’t want you to save money. It’s because they don’t want to risk offending someone
Many customers would be glad if a clerk pointed out a senior discount, or “15% off for women on Tuesday” special, but some shoppers would get angry at the suggestion. That’s why store workers seldom say anything. In most cases, you need to know in advance about available specials, or you need to ASK.
Asking, by the way, is a simple procedure. You need say nothing more than this: “Hey, do you offer any special discounts that I may be unaware of?”
Businesses love it when the word gets out about their specials. Discounts bring in customers and discounts encourage repeat visits. They WANT you to know. Our aim here is to help them out and alert you to special prices you may be missing out on now.
Organizations that Help People with Disabilities Get Discounts and Special Pricing
Let’s begin by reviewing a few of the organizations that advocate for people with disabilities. These groups can provide all kinds of assistance. They can also be an excellent platform for finding opportunities to network with others.
Discounts for People with Disabilities
This site was founded by a couple who totally “understand the financial burden of disabilities.” After Mara was diagnosed with Multiple Sclerosis, their lives changed dramatically. Her income-producing ability decreased, but expenses shot up.
They first discovered a tax discount Mara’s disability made them eligible for. That encouraged them to look for other potential savings. They needed every penny they could save.
And once they started looking, they began finding opportunity after opportunity. So they started a website to help others with a disability get help.
Features of Discounts for People with Disabilities: You can search by U.S. state and county to find special offers close to you. Categories included are extensive.
Here are just a few of the types of discounts listed:
- Assistive technology discounts
- Banking services special offers
- Education discounts
- Health care supplies at reduced rates
- Prescription plans for discounted medicine
- Tax breaks for people with disabilities
- Transportation help and rides for those with disabilities
Be advised that not all (or even most) of the offers you will find on this website are free. Many, however, are low-cost or tied to another program that will help with a purchase. Use the search feature there as a way to open your eyes to the potential.
This site is a clearinghouse for information on programs and services available via the U.S. federal government to those with disabilities.
Here are the categories covered:
- Benefits for people with disabilities
- Civil Rights and those with disabilities
- Community Life – includes information about financial help, independent living, personal assistants for people with a disability, community-based help, and more.
- Educational Assistance for students with disabilities
- Employment Opportunities for those who have disabilities
- Health, Housing, and Transportation assistance for those with disabilities
- Emergency Preparedness, Technology, and Accessibility
Check the Quick Links section for easy access to programs and phone numbers that can open the door to a whole array of services aimed at providing help for those with disabilities. This site alone has the potential to save you thousands of dollars annually.
Invisible Disabilities Association
Not all disabilities are obvious. Some suffer from mental disorders, learning disabilities, and other maladies that are often “hidden.”
According to the Americans with Disabilities Act (ADA), anyone who “has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment” qualifies for benefits under the act.
Accordingly, the Invisible Disabilities Association (IDA) seeks to reach and educate those who may not realize their rights and the potential benefits available to them. While the IDA doesn’t list specific discounts or special purchasing offers for individuals with a disability, it is an excellent clearinghouse for information.
Here are the categories covered:
- The definition of “invisible disability”
- Living with invisible disabilities – encouragement and online resources
- Programs for those with disabilities, including the Brain Ideas Symposium
- Disability awareness – including a blog and a newsletter
- Disability awareness events – seminars, awards ceremonies, other events
- Networking and involvement – social media and a support community
If there’s one message we want to get delivered with this guide is that discounts, services, and special offers for people with disabilities are widely available. In most cases, though, you need to know about them and/or ask about them.
Few people will approach someone with a disability and say, “Hey, did you know you’re eligible for a special program?” The risk of offending someone is just too big to risk saying something.
Microsoft, for example, goes above and beyond in their desire to employ workers with disabilities. Microsoft success stories abound, yet you generally need to hear about the opportunity in order to take advantage of it.
SeaWorld and other entertainment providers often provide programs to help guests with disabilities avoid long queues for rides and offer discounted admission for these individuals and their assistants – but you have to ask. Call guest services in advance to find out what you’re eligible for. They want you to have fun, and they’ll often go the extra mile to make sure you do.
Managing a disability can be tough, but you don’t have to handle it all by yourself. Plenty of people, programs, and organizations want to help. Your end is let your needs be known. Never feel bad about asking for help. None of us can function well without the love and assistance of others.
This article first appeared on CouponChief.com: https://www.couponchief.com/guides/savings_guide_for_those_with_disability
Maxwell Ivey (The Blind Blogger) is an inspirational and motivational personal coach who also runs a business brokering carnival rides and amusement equipment. A native Texan, Max loves to sing and spend time with his unique and crazy dog, a “Greymation” named Penny.
Taking preventive steps to help reduce the risks of injuries sustained from falls and slips can improve a senior’s quality of life. Aging adults can make accommodations to their home by age proofing their home to minimize future in-home accidents. Age-proofing a home isn’t about remodeling the entire house. Safety updates can be as simple as eliminating clutter or installing new light bulbs. Although purchasing a fire extinguisher, buying a new bed, or paying contractors to install handrails or an in-home elevator may all require spending some money however, these costs are helpful investments to ensure a senior’s safety and quality of life. This infographic published by Easy Climber, provides a home improvement checklist to the aging population to help make aging in place safer.
Easy Climber is part of one of the country’s largest home remodeling companies, an organization dedicated to providing products and services that enable seniors to successfully age in place.
When disabilities or memory impairment make going out more difficult, seniors can feel like they’re not able to do the things they love anymore. Going online can help them stay social, learn new things, and have fun without the hassle of going out.
That is, of course, if they can navigate the internet!
Here are some tools to help seniors get online, stay safe, and have a good time — giving us time to get some things done or maybe even have a few moments of peace and quiet!
Skills to get started
If your senior is able to attend classes in person, check with SeniorNet or your local library to see if they offer services to help people get online. If not, there are online classes and videos you can help them access.
This great website helps seniors learn the computer skills that feel like second nature to us — like using a mouse — that can be difficult to get a hang of.
The BBC created Webwise as a beginner’s guide to the internet. It starts with computer basics, walks you through email, introduces users to the internet, and helps guide seniors through the basics of social media. It even explains how to stay safe online. This is a great resource.
Senior Planet’s tech tips section is an always-up-to-date source for information on the latest tech trends, apps, and tools.
A friendlier experience
If you’re helping set up a computer for someone with visual or hearing impairments or trouble typing, this site will walk you through adjustments you can make so they can have an easier time navigating the web.
Clear out the clutter of typical search engines and direct your senior to Good50 instead. They’ll get the same results with an easier navigation experience.
Clear away the clutter of a typical PC interface and replace it with something designed to be intuitive for seniors.
So many caregivers find their requests for help fall on deaf ears. So many people say they’re willing to help, but then they never seem to be around when you need them. Why does this happen?
Friends and family
It can be uncomfortable to do, but letting people know you could really use their help is important. Ask a neighbor if they could pick a few things up for you while they’re out. Let your community organizations know you could use a volunteer for a few hours to clear up your yard or keep your mom company. See if your friend would come cook dinner and eat with your family once a week. The more specific you are, the better your chances.
It can be a real challenge to break up tasks into pieces that strangers can help you with, so start small. Hopefully soon certain asks will be taken off your plate without you having to do anything about it — the neighbor who mows your lawn when he does his and the friend who’ll take your dad to the doctor every week.
People will say no and let you down, but people will also help.
Many people want to help, they just don’t know what you need. It’s like that friend you keep meaning to see, but never make real plans with — get specific and it’ll actually happen. People feel good about helping. Think of all the times people have helped you in the past — they’ll be there for you again.
Sometimes people offer to help just like they ask you how you’re doing today or comment on the weather — it’s just a reflex. They’ll be surprised to hear from you if you call them up and ask them to follow through.
Other people really mean it when they say they’d like to help, but they don’t know what to do. Often times they’ll come through if you ask them to do a specific task.
It can be frustrating to ask people for help multiple times and have them turn you down. Everyone’s busy, not just caregivers, but there are ways around feeling like coordinating help is more effort than it’s worth.
Apps like Tyze and Caring Bridge help you by saying what you need and when you need it and allowing people to step in when they’re available. When people offer to help, add them to your network of supporters on the app. Make a list of the things you need help with. Ask them in person or over the phone, too.
Medical professionals often have to put their guard up against getting too involved with patients, so they may cut you off or seem cold when you tell them how much you struggle. They may also not take the time to figure out what, exactly, it is you’re asking for.
If you ask direct questions — can I get help with this bill? can I get medication delivered? is there home care help available? — you may have better luck.
Ask yourself this
Do you want help or someone to listen?
If you’re frustrated with someone’s attempts at giving you advice, ask yourself what you’re looking for from the conversation. Do you want advice? Offers of actual help? Or do you just want someone to listen and encourage? Let them know what you want.
Do you want an expert or someone who’s been through it?
There’s a time when you want specific advice and a time when you’d like to commiserate and hear about someone else’s experiences. Remember that an expert may have never actually had to apply his or her advice. Each person’s experiences are unique, so what helped one person may not help you.
What am I asking for?
How much of the background information does someone need to know to understand how they can help you? So many times in life a brief question is more likely to get attention than a long story.
Who to ask
Your doctor likely has no idea how much things cost or what programs are available to help. Doctors also rarely have the time to listen. What you can do is ask your doctor or nurse to refer you to a social worker.
A social worker can:
- provide counseling for you and your family
- connect you to support groups and other families
- help you find financial support
- help you communicate with the medical team
Many people struggle when a family member is seriously ill or disabled. Social workers can help you cope with the financial, emotional, and practical problems you’re facing.
I still remember the days when my parents chose my wardrobe. They paid for my clothes and therefore I had to wear what they wanted. Needless to say, their selections were less than fashionable, resulting in me getting a healthy dose teasing on the playground. This helped me learn a valuable lesson: when others get to make decisions on your behalf, it’s really hard for them to set aside their own tastes and motives. I call this the Decision Maker Bias.
Many decades later, I now find myself heavily involved in my parents’ care and often have to decide what’s best for them. Should they move into a facility or live on their own? Do they need a caregiver, or perhaps even a geriatric care manager? Should they downsize or keep living in their house with a stairway? I constantly catch myself forming strong opinions on each of these topics, but after some introspection I realize that there is a trace of my own interest in them. I genuinely want my parents to be happy, so I created a framework that helps me spot decisions where I might be affected by the Decision Maker Bias.
We often try to get our parents to move closer to ourselves, thinking that they will benefit from us being able to spend more time with them. However, we also have to consider the cultural impact on our parents’ lives. Would a culturally conservative 90 year old from the Midwest feel at home near Berkeley, CA? Will they be able to connect with their neighbors, and will they find a local church that fits their needs? While it’s true that we might be seeing them on weekends, they may experience isolation and depression on all other days of the week. Also, their old friends and neighbors they leave behind are often restricted in their mobility, making it very hard to see each other again. When relocating an elder, we have to remember that this is more traumatic to them than we can imagine.
Safety is the cornerstone argument in almost all elder care discussions; we use it to downgrade houses, move our parents to assisted living facilities, veto long trips and outdoor activities, etc. But what we often forget is that money can buy safety – you can hire caregivers, install home safety equipment, use smart monitors, etc. In other words, the question should not be: “Is it safe?” but instead: “Can we afford to make it safe?” You won’t always be able to say yes, but be aware that being an overprotective adult child is not always in the best interest of your parents – sometimes the extra effort and cost it will take to keep them safe might be worth the happiness they’ll get out of their wishes for autonomy and independence coming true.
I don’t believe that this is happening between me and my parents, but I’ve certainly encountered it as part of my work at Kindly Care – as caregivers and elders spend a lot of time together, inevitably they start forming strong bonds which can make the adult children jealous. Particularly, the topic of oversharing sensitive family stories seems to come up a lot. Caregivers are in a difficult spot – as a companion, a part of their job is to be a great listener, but not all topics are good for their job security. Adult children can get suspicious that the caregivers are being noisy, and it’s hard to determine who initiates such conversations. What’s clear in those situations is that the adult children face the Decision Maker Bias: their hurt feelings can hinder their parents’ ability to bond with their caregiver.
When encouraging my Mom to be more active, I usually suggest that we go for a walk. I just love the outdoors, and it’s one of my favorite ways to bond with her. However, I recently read in the New England Journal of Medicine that dancing trumps all other recreational activities when it comes to mental acuity in aging. Well, dancing is my least favorite activity, and now I face the same dilemma that parents face when helping their kids decide which sports to pursue – should I encourage something that we’ll both enjoy? This just reminds me once again that our personal taste has a real impact on the people we care for.
Are there any other areas where you can spot the Decision Maker Bias? Leave them in the comments so that we can all be more aware, and get better at realizing our bias when we make decisions on behalf of the ones we love.
Igor Lebovic is the CEO of Kindly Care, a self-serve care management platform that makes it incredibly simple to privately hire caregivers without having to worry about sourcing, safety or compliance.
Follow Igor Lebovic on Twitter.
Featured image: Roman Nerud / Shutterstock.com
You’re a family caregiver and need outside help. These days, most large and mid-size towns have caregiving agencies. Before you sign with an agency do your research. Keep in mind that it can you weeks to adapt to a paid caregiver. That’s because you are creating a partnership.
My husband’s legs are mostly paralyzed and I’m his primary caregiver. With help from therapists he learned to stand, stand and pivot, and walk 50 steps with the aid of a walker. Still, he needs lots of support. I’m on the job 24/7 and rely on paid caregivers. A caregiver comes each morning and stays for two hours.
The training and expertise of paid caregivers varies widely. Retired nurses, nursing assistants, and nursing students are an ideal match for our situation. Just as I want the best for my husband, I want the best for paid caregivers. You probably want the same and these tips will help you forge a partnership..
Start with a home “tour”
Even if your place is small, the caregiver needs to get a sense of the space. Caregivers need to know where the linen closet is, where incontinence supplies are stored, which drawers contain underwear, and which contain socks. I store towels in baskets with labels: towel sets, hand towels, floor towels (for the shower wheelchair puddles and drips).
Explain your daily routine
Our routine is so detailed that the agency created a task list for caregivers, a practical idea and one you may wish to use. I think a routine helps caregivers and care receivers alike. It also helps with time management. Spending too much time on one task deletes others.
Take advantage of perks
Most caregiving agencies allow caregivers to do light housekeeping and you may as well take advantage of this. I ask the caregiver to dust, vacuum, clean mirrors, etc. The caregivers know where my cleaning supplies are stored and I keep them well stocked.
Follow agency rules
Paid caregivers aren’t allowed to dispense prescribed medications or apply prescribed lotions. Always heed these rules. Still, I tell the caregiver about the medications my husband is taking because some cause sleepiness.
Frame concise, clear sentences
Caregivers must adapt to different settings, people, routines, and equipment. Often they race from one client to the next. To save time, be as concise as possible. For example, “Please carry the laundry basket to the laundry room.”
Share special needs
My husband wears a brace when he practices walking and getting ready is a process. The nine steps: 1) put on support socks; 2) put on shoes; 3) put brace on left leg; 4) put lift on right foot to equalize the length of his legs; 5) put half sock on left shoe so the paralyzed leg can slide; 7) get the walker; 8) brace the walker as he stands; 9) Be ready to catch him if he falls. I help my husband stand and follow behind with the electric wheelchair.
Follow the Golden Rule
Treat caregivers as you would like to be treated. When the caregiver leaves I say, “Thanks for your help.” According to one caregiver, we’re the only people who do this. Without paid caregivers I would be an exhausted, aching, discouraged wife. Paid caregivers make my days easier. Cheers for them all!
Chronic illness is expensive; we all know that. Doctors, medications, skilled nursing, home enhancements, all of this has a cost. Sometimes it may seem easier, and the only option for you, the working caregiver, to just pay it out of pocket. My advice is that you should refrain from doing this as much as possible. The best way I can describe my reasoning is by likening it to the warning they give on airplanes; put your oxygen mask on first before attempting to help others. If you are incapacitated, you can’t help anybody.
The same principle applies to your finances. If your finances suffer, this maybe not only a hindrance to your future but to your ability to care for your loved one. Below is a list of a few things you will want to try to avoid if needed to dip into your own pocket:
- Your retirement plans: This can have costly implications on the long term growth of that account and can really put your own retirement in peril. Typically, loans are tax free, however, if they are not paid within 5 years, it will be counted as taxable income. Also, some retirement plans do not allow loans, so if you take it as a withdrawal, it will count as taxable income as well as an additional 10% penalty and you will never be able to put that money back into the account.
- Adding your parent as a dependent on your health insurance: I have heard of some success stories with this, however, I would not count on this. It may not even be necessary with the new healthcare exchanges and, if your parent is over the age of 65, they are eligible for Medicare.
- Claiming your parent as a dependent for taxes: Claiming your parent on your taxes is allowable if you are provide at least one-half of their support. However, your parents income level has to be below the personal exemption amount (for 2016 is $4,050). If they are receiving any Social Security, this maybe a hard number to hit, so any tax benefits will be hard to come by.
- Health Savings Accounts (HSA) and Flexible Savings Accounts (FSA): Both of these accounts are tax savings vehicles to help pay for medical expenses. Money from these accounts needs to be used for qualified medical expenses for the individual and their family. If they are used on a non-qualified expense or for a benefit not covered on the plan, they will be subject to income tax as well as an additional 20% penalty tax.
Being a family caregiver for someone living with chronic is a difficult task and using some of your assets to help with care may be inevitable. The saving grace is the political discourse seems to now be addressing this issue for family caregivers. There are a few bills presented to Congress to give some financial assistance to caregivers. Even President-Elect Trump has outlined tax incentives to assist the family caregiver. That being said, the gears of democracy grind slowly and until those bills or promises become law, you should try your best to protect your finances so you can survive the difficult task of caregiving for someone with chronic illness.
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!
The capital gains tax exclusion
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.
One benefit of the increasing life expectancies for Americans is that more people have bonus years for enjoying the company of their aging parents.
But all is not rosy. Those extended years also boost the odds that parents could go broke or suffer from dementia and be unable to make financial decisions for themselves.
That can leave adult children perplexed about when and whether they should step in and find out what’s happening with their parents’ money, says Carolyn Rosenblatt, a registered nurse and elder law attorney.
“Unfortunately, it’s not always easy to have those conversations,” says Rosenblatt, co-author with her husband, Dr. Mikol Davis, of The Family Guide to Aging Parents and Succeed With Senior Clients: A Financial Advisors Guide To Best Practices.
“Some stubborn parents just refuse to talk about their money. No matter what their adult children say to them, they put it off, change the subject or tell their children it’s none of their business.”
Of course, many adult children aren’t in any particular hurry to broach the subject either, says Davis, a clinical psychologist and gerontologist.
“They have their own discomfort about it and procrastinate,” he says. “Then a crisis comes up and no one has any idea what the parents have or where to find important documents.”
But Rosenblatt and Davis say it’s critical that these conversations take place so that the offspring can gather information about such subjects as the parent’s income and expenses, where legal documents are kept, and what kind of medical or long-term-care insurance the parent might have.
The success of these conversations often comes down to how you approach the subject, Rosenblatt and Davis say. They offer a few tips:
End the procrastination by picking a date for the talk.
Make an appointment with yourself to bring up the subject at a specific time. An opportune time to schedule this is after a birthday, a family event or a holiday where other family members are together who may share in the responsibility for the aging parents in the future.
Tell your parents you understand and respect their reluctance to discuss their finances. You can even make the conversation about yourself rather than about them. Say that you’re concerned that if something went wrong, you would be completely lost as to how to help them.
Address their fears head-on.
Let them know you understand they are worried that if they talk about their finances their independence might be taken away. You might add that you want them to maintain their independence as long as possible and you’re willing to help accomplish that, but you can’t do it without the correct information.
“Getting past an aging parent’s fear about talking about finances can be daunting,” Rosenblatt says. “But a well-planned strategy for approaching the subject will give you your best chance.”
Carolyn Rosenblatt and Dr. Mikol Davis are co-authors of The Family Guide to Aging Parents (www.agingparents.com) and Succeed With Senior Clients: A Financial Advisors Guide To Best Practices. Rosenblatt, a registered nurse and elder law attorney, has more than 45 years combined experience in her professions. She has been quoted in the New York Times, Wall Street Journal, Money magazine and many other publications. Davis, a clinical psychologist and gerontologist, has more than 44 years experience as a mental health provider. In addition to serving his patients, Davis creates online courses and products to assist professionals and the public with understanding aging issues. Rosenblatt and Davis have been married for 34 years.
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.
Caring for a loved one living with diabetes is quite a responsibility and when it comes to the approximately 29.1 million people living with diabetes in the U.S., it’s important to know the types of complications your loved one may face as a result of the disease.
What many people may not know is that diabetes can result in diabetic foot ulcers. Healogics, Inc. encourages those living with diabetes and their caregivers to know how to take good care of their feet.
Healogics is a wound care services management company, putting patient care at the forefront of everything we do. With nearly 800 Wound Care Centers® across the nation that are part of the connected network of outpatient centers, academic medical centers and other post-acute sites, we offer an evidence-based systematic approach to advanced wound care treating an underserved and growing patient population.
Twenty-five percent of people living with diabetes will eventually develop a foot ulcer due to diabetic complications and foot ulcers precede 85 percent of lower extremity amputations in patients with diabetes. This disease can also cause heart disease, stroke, lack of circulation and feeling in the lower limbs and other complications which can result in hard-to-heal wounds.
The fear of losing a limb is very real for people living with diabetic foot ulcers. Healogics offers hope to these individuals with longstanding (chronic) wounds through data, advanced wound care therapies like hyperbaric oxygen treatment, and access to wound care specialists who are passionate about finding a solution that will work for each individual patient.
Healogics mission is to share our wound care expertise with every patient who could benefit, wherever they are, and by the best means available. With nearly half of our patients living with diabetes, it’s important to talk about how the disease affects wound healing and the preventive steps patients and their caregivers can take to avoid complications. Healogics offers the following tips for proper foot care:
- Get comprehensive foot exams each time you visit your healthcare provider (at least four times a year)
- Perform daily self-inspections of the feet or have a family member assist
- Clean toenails and take care of corns and calluses on a regular basis
- Choose supportive, proper footwear (shoes and socks)
- Improve circulation by eating healthy and exercising on a regular basis
- Stop smoking immediately
It’s important to seek help from wound care experts. Healogics has a network of more than 4,000 providers across the country who receive ongoing advanced wound care training, and in 2015 alone saw approximately 285,000 new patients.
The team at Healogics has a true passion and enthusiasm for wound care that can be felt from the first moment you walk into one of nearly 800 Wound Care Centers. Our teams work day in and day out to ensure patients return to a great quality of life, and have the opportunity to enjoy the people and hobbies they love most.
Dr. Scott Covington, MD, FACS, CHWS, Chief Medical Officer for Healogics
Dr. Scott Covington is the Chief Medical Officer for Healogics. Certified by the American Board of Surgery and a fellow in the American College of Surgeons, Dr. Covington was founder of the first multidisciplinary wound center in North Carolina’s Wake County. In addition to an extensive clinical experience in wound care, Dr. Covington is a Certified Hyperbaric and Wound Specialist (CHWS) with the American College of Hyperbaric Medicine, representing a dedication to the highest standards and achievement in wound care with an advanced level of specialization in hyperbaric chamber operations.
Dr. Covington lectures frequently throughout the United States on wound care, and serves as an industry advisor on wound-related issues. He is a member of the Wound Healing Society, the American College of Hyperbaric Medicine and the Undersea & Hyperbaric Medical Society.
Dr. Covington completed his undergraduate and medical school education at the University of North Carolina, Chapel Hill, and was trained in General Surgery at University of Texas, Houston.
Headquartered in Jacksonville, Fla., Healogics is the nation’s largest provider of advanced wound care services. Healogics and its affiliated companies manage nearly 800 Wound Care Centers® in the nation and saw approximately 285,000 new patients in 2015 through a connected network of partner hospitals and Wound Care Centers, academic medical centers, and other post‐acute sites. Healogics utilizes an evidence‐based systematic approach to chronic wound healing to treat an underserved and growing patient population. A fund managed by Clayton, Dubilier & Rice, a private investment firm, is the majority shareholder of Healogics. For more information, please visit www.healogics.com.
I remember when I was first tasked with figuring how the finances would work for our family to assist with caregiving. Social Security, Medicare, Long Term Care; the reality was daunting. I didn’t even have enough work history or income to qualify for these benefits and I needed figure out how they work for my family.
If you are a working professional who is tasked with the responsibility of assisting an elderly parent who has been diagnosed with a chronic illness, you maybe having similar thoughts as I was in regards to their finances. If this is the case, having a plan is going to be your saving grace to make sure they receive the best care possible, without interruption due to finances.
First, you need access to your loved one’s information. Power of Attorney is critical in managing day-to-day finances for someone who a chronic illness, however, having the document is not the only step. Make sure banks, financial advisors, CPA’s and anybody dealing with privileged information receives a copy of it and approves you to act on your parent’s behalf.
Now that you have access to their information, you may have to make decisions about what assets to use to pay for their care. Below is a summary of some common assets you may use or need to know about:
- Social Security: Senior citizens are eligible for payments from the Social Security starting at full retirement age (typically age 67). The payments are based on their lifetime earnings and are paid out monthly. If someone is disabled prior to full retirement age, they may be eligible for Social Security payments as well.
- Medicare: Basically, there are three parts: Part A: hospital insurance, Part B: doctor visits and Part D: prescriptions. Medicare is available to individuals once they reach the age of 65. One thing to keep in mind with Medicare is that there is no long-term care insurance. They are eligible for Skilled Nursing Facility Care only after a hospital stay and only up to 100 days.
- Medicaid: This is a program designed for needy and vulnerable individuals and families. It is a federal program, however, each state is in charge of administering the Medicaid dollars and determining need. What is nice about Medicaid is that it does offer Skilled Nursing Facility Care. However, since this is designed for low income population, it is very hard to qualify. Families sometimes try to “spend down” a loved one’s assets to qualify them for Medicaid, however, states now have a five year look back period to see if large amount of assets were given away instead of being used for care. Consulting an attorney is the best way to implement a strategy to qualify a parent.
- Retirement Plans: Your parent may have saved money in a retirement plan during their working years or may have a pension from an old employer. It is important to use this as additional income if Social Security is not going to be enough. Some accounts you may typically see are 401(k)s, 403(b)s, Pensions, IRAs and Roth IRAs. All distributions from these accounts are considered to be taxable income (except the Roth IRA), so tax planning may be involved.
- Reverse Mortgage: Typically thought as a last resort, using a reverse mortgage on your parent’s home may be a great way to get some supplement income to cover the cost for care. If your family has decided not to keep the home after death and if there is little to no mortgage, this is a great way to create income off an asset that is illiquid. Reverse mortgages are only available to those 62 years and older and may only take up to a certain amount on the value of the home. If you are considering this option, discuss it with a financial planner as well as a reverse mortgage broker.
In my experience, the more prepared you are, the less likely for caregiving to become a nightmare. Make sure you create a plan and periodically check in to make sure you are on track. Don’t be afraid to ask for professional help as well. There are many professionals with expertise in these areas that can help ease the stress of trying to figure it out on your own.
According to the U.S. Department of Veterans Affairs (VA), family members and friends who care for veterans spend, on average, more than 20 hours a week taking care of their loved one.
This may take a heavy toll on caregivers, but there is help and assistance for those in need of support.
Called VA Caregiver Support, this federal program ensures that veterans stay home longer by supporting their caregivers.
“Caregivers are the most important part of veterans care,” Caregiver Support Coordinator Ryan Mooney of the Stratton VA Medical Center in Albany, NY said.
Mooney said the cost of long-term care for veterans is immeasurable, running into the hundreds of thousands each year, but caregiving cuts down the expense of that care.
“Without caregivers, the veteran will be in hospitals and long-term care facilities. Living at home is better both for mental and physical wellbeing,” he said.
Support comes in many ways including providing home health aides, therapeutic workshops, and individual and group counseling at the VA medical center and at home.
Veterans who served in the military post-9/11/01 are also qualified for a stipend.
In order to qualify for the VA Caregiver Support program, the veteran must require assistance in two activities of daily living, like washing or cooking for themselves.
The VA’s Adult Day Health Care (ADHC) program at the hospital is another intervention available to the caregiver and the veteran providing respite to caregivers three days a week.
The caregiver can then arrange to take care of personal matters during this time.
“They (caregivers) know they can go to their appointments while their loved ones are at ADHC,” Mooney said. “We can also give up to 30 days of respite care who need institutional care.”
Caregivers are also able to call the Caregiver Support line at 1-855-260-3274.
“Veterans by their nature are independent, but when it comes to healthcare this can be a detriment,” Mooney said.
“We rely on their caregivers to provide us with accurate information to help assess their individual medical needs,” he said.
Support for caregivers is needed more and more as the population ages, Mooney said.
“Caregivers can show signs of dementia if they are taking care of veterans with dementia like Alzheimer’s disease. They are doing multiple things as well as taking care of their loved one,” he said.
“It’s important to stay home for the holidays or sharing the games on TV with each other. One veteran is especially grateful that he can spend time at home watching his favorite team, the New York Yankees, on TV with his wife,” Mooney said. “It definitely has had a positive impact on his welfare.”
When people age, they need more people to care for them, according to Mooney, and as medical interventions increase the longevity of people, caregiving will become more important.
Mooney can be reached by phone at 518-626-6020.
Visit www.caregiver.va.gov for more information on VA Caregiver Support.
Computers are everywhere. Naturally, they’re used widely by doctors and hospitals. Without doubt, these technologies are improving care and communication among doctors and patients. But there are new challenges too. Do digital tools interfere with a doctor’s ability to treat patients effectively? There are pros and cons, but one thing is certain: they are here to stay.
What can you do to optimize your relationship with your doctor and his/her computer? Before I present my four tips for being a patient in the digital world, it is important to understand some of the pros and cons of computers in medicine.
Electronic Health Records (EHR) systems can improve data accuracy and sharing, but currently, most EHRs don’t communicate with each other, making it difficult for doctors to easily access comprehensive patient information.
How doctors use EHRs can significantly impact appointment quality. Doctors must listen to patients, respond appropriately, and engage with patients. A doctor typing or dictating may not be able to listen intently to the patient and may have diminished face-to-face connections.
Additionally, doctors can make mistakes when entering information, including mistakes regarding diagnosis, tests, and medications. This misinformation will travel with you if corrections aren’t made.
So What Can You Do?
- Make Sure Your Doctor Is Paying Attention to You
It is crucial that your doctor listens to your complete story, as this is a major part of getting a correct diagnosis and treatment plan. If your doctor is distracted by the computer, speak up. If needed pause while your doctor types. Realize that doctors are people too and it’s a challenge for anyone to do two important things simultaneously.
- Take Charge of Your Medical Information
Make sure your EHR is accurate by asking your doctor to print a copy of each appointment’s notes. Notify your doctor if you see inaccuracies.
Don’t rely on your EHR – keep your important medical records together and organized, including test results, medications prescribed and clinical trial information, and bring them with you to all medical appointments, including visits to the ER.
Don’t assume your doctors are communicating with each other, or reading each other’s reports. Doctors are not communicating with each other as much as 70% of the time.
- Take Detailed Notes at all Appointments
Your doctor’s notes may be inaccurate or incomplete, and are often not shared between doctors. It is critical that you take detailed notes, while still with the doctor, at every medical appointment – don’t even wait until you get in the car! A landmark study found that 40-80% of medical information provided by healthcare professionals is forgotten immediately; the more information presented, the lower the proportion remembered. Of the information that was remembered, almost 50% was remembered incorrectly.
Take notes by hand, not on your phone, tablet or laptop. Importantly, writing (versus typing) helps you remember and understand information. A recent study on note taking by college students found those who took handwritten notes remembered the material better, and were able to synthesize the information better, than students who used a laptop. It’s hard to say if this translates into note-taking in a doctor’s office, but these findings could apply.
Writing helps you maintain eye contact with the doctor which can improve the quality of the appointment. Lastly, if you use a tablet or phone, auto-correct may dramatically change important words, leaving you guessing. If you want to keep digital notes, type your handwritten notes at home.
- Be Vigilant About Medications
To minimize your risk of dangerous medication errors caused by ordering systems:
- Don’t assume ordering systems will eliminate the risk of being given medications that dangerously interact. If you are taking multiple medications, discuss the potential for adverse drug interactions with your doctor and/or pharmacist. Fill all your prescriptions at one pharmacy; their computer may detect potential adverse drug interactions.
- When given a new prescription, write down the name, dosage and instructions. Before you pay, double check to make sure you are given the right medication.
- If a medication doesn’t look familiar, ask your pharmacist (outpatients) or your nurse (inpatients) before taking it!
Technology in healthcare is here to stay. Ideally, we’ll each have a master digital file that fully captures our health history which can be accessed, shared and updated by all of our doctors, offering a more comprehensive view of our overall health and improved care coordination between specialists. However, even when EHRs reach their full potential, it will remain critical for patients to be fully involved in their care by actively advocating for themselves. It will always be important for patients and providers to ensure that EHRs and other technologies don’t get in the way of basic care and critical patient-physician communication. By being engaged in the process and speaking up if something doesn’t feel right, you can help ensure that your doctor’s computer is a help, not a hindrance.
Caregiving is a difficult role. It’s filled with unexpected challenges, as well as physical and emotional turmoil that can lead to poor health. When you’re the primary caregiver to an aging loved one, their wellbeing is at the top of your priority list. However, taking some time for respite care can help you stay healthy too, so you can continue to provide quality care for a loved one at home.
Here are a few respite care services that can support you in your role:
In-Home Respite Care
In-home respite care is one options that families utilize to support aging loved ones who have decided to age in place. There are many in-home care agencies that offer trained caregivers to families for a few hours or a few days a week, depending on the elder’s needs. Most agencies have a base rate between $25 and $45 per hour.
These caregivers can provide companionship, physical therapy supervision, meal preparation, transportation, and help with activities of daily living such as bathing and dressing. Everyone needs a break from time to time, and hiring in-home care is a great way to get the support your loved one needs so you can take some time to focus on other responsibilities.
Community-Based Respite Care
Many senior housing communities also offer short-term respite stays ranging from a few days to a few weeks long. These short-term stays are great for families who need a break from their caregiving duties, are going away on vacation, or are otherwise unable to provide the needed care. Respite stays generally range from $150 to $300 per day.
During these short-term stays, communities provide assistance with activities of daily living, support with medication management, and provide nutritious meals to residents at no extra cost. To aging loved ones, a respite stay will feel like a luxury vacation in a welcoming community of peers. To family caregivers, a respite stay can provide peace of mind so that they can take time off to focus on their own health and wellbeing.
A variety of organizations also provide respite grants for families of aging loved ones to utilize when they need some help in their caregiving role. The Alzheimer’s Association, the National Family Caregiver Support Program, and the Alzheimer’s Foundation of America all offer funding to families in need of in-home or community-based respite care. Grants often range from $500-$1000, and can usually cover up to a week of respite care. Many senior housing communities will work with families and organizations in order to schedule respite stays that fit within the grant budget.
Online Support Groups
If you decide that you’d like to keep caring for an aging loved one, but just need some support from others going through the same experience, online support groups can be extremely beneficial. Whether you join a Facebook group for caregivers or a forum on The Caregiver Space, being part of a community can help you feel supported in both good times and bad.
These are just a few examples of respite services that can serve your family as you work tirelessly to provide care for aging loved ones at home. Even a few days of respite can make a world of difference when it comes to taking on a caregiving role. So if you start noticing the signs of caregiver burnout such as fatigue, stress or anxiety, consider respite care to help you get back on track.
Jacqueline Hatch is the Content Manager at Seniorly, a company that provides free resources for families in need of senior care services. Her goal is to produce educational articles for Seniorly’s Resource Center to help families navigate the complicated world of aging options.
Holidays are often considered a time for celebrating. We honor traditions and reminisce about past holidays and the people we shared them with. The very thing we love about holidays can be the source of pain and renewed grief if someone we love is no longer with us to share in these moments.
Why is this time of year so difficult for those of us grieving the loss of a loved one?
- It reinforces the idea that things will not be the same without that person.
- You may feel some guilt for trying to celebrate a holiday or special occasion.
- Awkward, painful moments may arise while celebrating that magnify the loss.
If you recognize that the upcoming holidays may be challenging there are some things you can do that will help you to cope. It means you may have to be proactive and plan ahead but this will be time well spent.
Ways to Cope During the Holidays
- Honor old traditions if that feels good. If not create new traditions that are meaningful.
- Give yourself permission to get more support from family, friends, counselors, clergy.
- Think about previous ways you coped with losses in the past that were successful and revisit them.
- If the stress of gifts, cooking, being social, feels too stressful/painful, ask family or friends to help with cooking. Ask for a year off buying gifts. Ask for permission to take time off to take care of yourself and focus on self care. It is OK to take time away from the festivities if you feel you need to.
- Be proactive. Have an honest discussion with the people you normally spend time with at a holiday and discuss what you would like to do and why. That helps you feel like you are not planning on your own and it is more of a group, co-operative event. You may not all agree but at least you will understand everyone else’s position.
- Find new ways of honoring the memory of a loved one. If they loved flowers plant or donate a tree. If they loved children, donate to a children’s charity in the name of your loved one. Maybe you might want to volunteer at a program that was meaningful to a loved one who has passed away.
Iris Waichler, MSW, LCSW
Iris Waichler has been a patient advocate and licensed clinical social worker for 40 years. She is an award winning author. Her latest book, Role Reversal How to Take Care of Yourself and Your Aging Parents received a Finalist Best Book of 2016 Award from USA Books. Ms. Waichler has done individual, group and family counseling with patients and families facing catastrophic illnesses. She has done freelance writing on health and patient advocacy topics for 16 years. Her website is www.iriswaichler.wpengine.com
Mom’s Choice Gold Award Winner for Best Book of the Year.
Winner of the National Parenting Publications (NAPPA) Gold Award for best book of the year.
Winner of the finalist award for Foreword Magazine 2007 non-fiction Book of the Year.
Being a caregiver comes with many challenges, whether you’re caring for a relative or a paying client. Caregivers who are relatives often take on the responsibility of managing their charge’s finances, which can be a complicated and frustrating process for all involved. Below are some of the major financial challenges that face seniors and some tips on how to discuss them productively.
When you no longer have a steady income, monthly bills can add up quickly, even with proper retirement planning. With rising costs in prescriptions, food, amenities, and pretty much every aspect of life, many seniors are finding that their retirement funds aren’t going as far as they thought they would.
How to Discuss
Sit down with the monthly bills and talk about what is necessary and what can be cut. For prescriptions, look into whether using a different pharmacy would change the price, or if there are generic-brand prescriptions or over-the-counter options their doctor can recommend. If your charge does not want to talk about money, ask if you can try to cut expenses without them. If the answer is no, then gently continue to bring up the subject until they acknowledge the importance of their finances.
Seniors can get defensive about their health, and since life insurance mainly exists to cover death, many don’t want to think about it. This is one of many reasons so many seniors let their life insurance lapse. It’s important to discuss with them what coverage they have, whether they need coverage that applies to long term care, and whether their final expenses will be covered.
How to Discuss
When going through the monthly bills, address whether or not the life insurance bill exists, and if it does, ask what specifically it covers. This is the first step to determining if they have adequate coverage, or if they’re paying too much. If you can keep the subject focused on finances rather than “when they’re gone”, it will be a much more pleasant conversation.
Another reason people don’t like to talk about insurance is because they don’t understand it. Print off a basic guide to life insurance and help them learn any terms they’re unfamiliar with.
Many seniors require accessible spaces. Because of pride or fear, some seniors refuse to have safety improvements added to their home. If your charge has mobility impairments or specific accessibility needs, talk with them about improving their daily life with some home improvements.
How to discuss
Many seniors don’t know where to start when it comes to home repairs. They might be worried about cost, or they might feel like they shouldn’t need special accommodations. It’s important to address the issue from a convenience perspective. If they get a safe walk-in tub, they’ll need less help in the bathroom. If they have a wheelchair ramp installed, they might be able to spend more time outdoors. If they get handrails that meet ADA height requirements, they’ll have an easier time traversing stairs in and outside their home.
If they’re worried about funding, look into subsidy programs. If the additions are accessibility focused, your client may be able to get financial assistance in making the improvements. This assistance can be government provided or come from private organizations. Many areas have local programs dedicated to helping seniors.
When budgets are tight, extra spending can be the difference between comfort and poverty. If the person you care for insists on spending extra on trinkets, unnecessary items, eating out, or other activities, you’ll have to talk with them about how much spending in wise. This can be hard, because many seniors want to assert their independence and control over their own actions.
How to Discuss
Sit down and show them what their finances will look like if they continue their current spending. Offer to set up a budget for them or help them do so using online budget templates. Many are simple and straightforward, and require no computer skills. Once they’re able to see the effect of their spending, they should be more open to making a sustainable budget plan, minimizing extraneous expenses.
These are just a few ways to discuss finances with the people you care for. They won’t work in every situation, but hopefully they will be a good starting point for you. Do you have more tips? Share in the comments!
Jeriann Watkins Ireland
Jeriann blogs about her financial journey, food adventures, and life in general at dairyairhead.com. Check out her blog or twitter to see more of her writing!
Igor Lebovic, Kindly Care CEO
The holiday décor and trappings have already appeared in stores and folks are starting to make celebratory plans for the season. If you are a family caregiver for an ill or cognitively impaired individual, you may not be looking forward to the holidays; more work, more company (including those who may not realize how their presence and demands impacts on your schedule and work load), and additional stress on you and the person you care for.
Holiday gatherings easily show off an individual’s deficits. Imagine how confusing it is to be impaired and surrounded by people who know you, but you have no recall. Think about the constant noise (music, bells, etc.), bright lights and decorations that distort your sense of who and where you are. Imagine going to a family party with foods that no longer may be recognizable to you or that you are unsure how to eat.
So my advice is to learn to set realistic expectations—for you and your family member.
For your loved one:
- Attempt to maintain a regular schedule whenever possible.
- Simplify: shorten visits and events. You do not have to accept all invitations. Determine which ones might be the most important or provide the most joy to your loved one.
- Watch your family member’s reactions. Pay attention to their stress levels and make adjustments as necessary.
- Attempt to limit visitors to smaller, sporadic groups. This might be a perfect time to let other family members “visit” while you (caregiver) take a nap, Christmas shop or quietly read a book. If you must attend a large gathering, locate a quiet spot to leave the crowd for a “time out.”
- Make introductions with explanations. Act like you are introducing the visitor to your Mom or Dad.
- Maintain the familiar. Old traditions, familiar music, reading/signing holiday cards or other simple customs can be enjoyable and feel comfortable to the impaired individual.
- Pay attention: unthinking guests may offer your 90 pound mom on heavy medication the “spiked” eggnog, or mom might forget she is lactose intolerant and make herself a cheese plate.
- Keep physical conditions in mind. A person in pain or with special medical needs should be asked how much and when they want to participate. Don’t insist that they do. Give them an “out” if it becomes too exhausting. Needless to say, ask family who are sick to visit at another time.
- Where possible, solicit your loved one’s involvement in simple preparations—cooking, cleaning, sorting, etc. Most importantly, thank them for their help. Everyone likes to be appreciated.
- Get involved and do something (anything): a short walk to look at Christmas decorations, an animated holiday musical that encourages simulated dancing or swaying, decorating a tree – these are all possible activities.
- Reminisce about past gatherings, traditions or people. It’s time to bring out those old photo albums!
- Be prepared! Make sure you have a supply of medication, incontinence products, quick snacks, some baby wipes and an extra sweater when going out.
As a caregiver:
- Set reasonable expectations for yourself. You cannot do everything, and, most importantly, you don’t have to. Do you really need to make 5 kinds of cookies when you can go to Costco?
- Maintaining the same schedule and simplifying the season will go a long way in easing your stress.
- Ask for assistance! Ask family members to come sit with mom and dad while you do errands. Better yet, ask them to bake the holiday cookies or come help you clean the day before Thanksgiving. Learning to ask for help will make for better caregiving. After dinner coffee when mom is taking her nap is a great time to bring up whatever ongoing help you need.
- Self preservation: remember to take care of yourself first. Airlines advise you to put on your oxygen mask before your child’s so you can clearly and safely care for another. Self care helps you maintain your health, your patience and your sanity.
- Forget about perfection! A lopsided tree, gift cards instead of an actual boxed presents or a bakery pie will not detract from what’s important about the season. Spending time with family, keeping mom or dad comfortable with the gathering, and sharing the love will create a much longer lasting memory.
Igor Lebovic is the CEO of Kindly Care, a self-serve care management platform that makes it incredibly simple to privately hire caregivers without having to worry about sourcing, safety or compliance.
Follow Igor Lebovic on Twitter.
Of course your doctors have a direct effect on your health, particularly the diagnosis and treatment of your ailments. It is also true that the type of relationship you have with your doctors can directly impact the care you receive. Like any relationship, a strained one can lead to frustrations and misunderstandings, and when this occurs with your doctor, the results can mean less than optimal care, misdiagnosis and/or delayed healing.
We‘ve all experienced the frustration that comes with long waits at the doctor’s office. And many of us feel rushed during appointments, perhaps even pressured to minimize the number of questions we ask. Other times we might feel frustrated and/or disappointed when we feel like our doctor is not truly listening to us, or taking our concerns seriously. The relationship we have with each of our doctors can be complicated and ripe for conflict.
In order to have the best possible relationship with your doctor, and ultimately the best possible care, it’s important to understand what it’s like to be a doctor today. If we better understand their day-to-day pressures, we’re more likely come to appointments better prepared and in a better state of mind.
Due to billing policies and overhead expenses, doctors may see 24-25 patients/day. The 15-20 minutes allowed for each patient is generally not enough time for patients with complicated medical histories, those who are very ill, or those who present with tricky symptoms. In addition to seeing patients in the office, doctors must handle a wide range of other time consuming responsibilities each day, including phone calls, emails, reviewing lab reports and imaging results, consulting with other doctors, refilling prescriptions, and dealing with insurance companies.
Your overworked doctor and its impact on your care
Doctors are impacted by job stress. One study found that 50% of Primary Care Physicians (PCPs) describe themselves as burned out. Many factors are responsible for these feelings, including an increased demand for productivity, a decrease in the amount of face time with patients, and an increase in administrative burdens (including filling out electronic forms) that don’t directly benefit their patients, and too many difficult patients.
Research has found that “burnout can be associated with a deterioration in the physician-patient relationship and a decrease in both the quantity and quality of care.” By many accounts, burned out physicians can negatively impact patient outcomes and recovery times, diminish patient satisfaction and reduce adherence to treatment plans.
The increasing demands on their time can also lead to errors. Almost 30% of PCPs report they personally missed test results that led to care delays. There have been various studies that show the negative impact of burnout on patient care. So how can we help alleviate some of these pressures.
Studies have shown that kindness, compassion and empathy actually have a significant effect on healing. When patients are stressed and anxious, their immune function and wound healing capabilities are negatively impacted. Conversely, studies have found that when nurses and doctors show empathy for a patient, by listening, connecting and validating their feelings, patients are likely to be less anxious, which leads to quicker recoveries from a wide range of conditions, including surgery.
Of course, this is a two-way street – kindness towards medical staff by patients can positively impact doctors and nurses. If you want to help your doctor avoid burnout, treat him/her with respect and have empathy regarding the burden of their work.
Be Prepared, Pleasant and Persistent
So what can you do to maximize your time and strengthen your relationship with your doctors? Here are some suggestions:
- Be compassionate and patient – realize that doctors are often overloaded, overworked and stressed. A little compassion from you goes a long way!
- Come to appointments prepared with questions, symptoms, concerns, etc. Prioritize your health issues/complaints in order of severity and/or concern.
- If you don’t understand what your doctor is telling you, politely ask for the doctor to repeat or rephrase his/her comments. Don’t leave the appointment confused about what you’ve been told.
- Don’t wait until the end of the appointment to bring up a serious concern or issue.
- Don’t leave the appointment without a plan for next steps.
- If you bring information you found on the Internet to an appointment be open to a conversation, and don’t insist that your information is more relevant than what your doctor has.
- Listen carefully and evaluate what your doctor is recommending. You have a right to refuse testing, treatments and/or medications, but don’t make rash decisions.
- Take detailed notes at all doctor appointments, and share the information with all members of your medical team at future appointments.
- Keep copies of all important documents (test results, etc.) together and organized, and bring them with you to all appointments.
- If something doesn’t seem right, speak up!
- Contact your doctor’s office to learn test results if you have not heard back within the expected time frame. Do not assume that “no news is good news”.
- Don’t wait until the last minute to contact your doctor for prescription refills, referrals, and other requests.
- If you hate waiting, try to schedule the first appointment of the day or the first appointment after the doctor’s lunch break.
Doctors today are facing increased pressures – an increase in the number of patients and related reporting and less time available per patient – and it’s not going to get any easier any time soon. A little kindness and understanding, and appointment preparedness, will go a long way in alleviating the pressure your doctor feels during your visits and may contribute to better care. We know that taking a more proactive role in our own healthcare is not just the right thing to do; it can positively impact the kind of care we receive.
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.
If you’re not on Facebook yet, you can get started with this guide. If you already have a Facebook account, keep reading.
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.
Reasons to not share personal information on Facebook:
- If you discuss someone else’s healthcare, you may be accused of HIPPA violations. Paid professional caregivers have been fired for posting patient information on Facebook.
- If you complain about a family member not helping, they may see your post and it could make the situation worse.
- If you share details of someone else’s life, they or someone they know may see it and be offended.
- If you share personal details of caregiving, people may react negatively. Posts about hygiene, mental illness, and other sensitive topics have elicited responses that were critical and unproductive.
You deserve a safe space to openly discuss what’s on your mind. Facebook is an open forum with millions of members – including bullies and scam artists. We maintain a separate website in order to create a safe space for caregivers. Facebook is a great tool, but it doesn’t cater to caregivers.
Is this post public or private?
When you look at a post, there’s a little icon next to the date and time. If you see a globe icon, the post is public:
If you see something that looks like this you’ll know it’s private:
If you place your cursor over the private icon, you can get more information about who can see the post:
In a Facebook group
Our Facebook page shares articles from our site and other things that caregivers should know about. Our Facebook group is a place where you can connect with other caregivers.
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.
You can customize what you see in your newsfeed using Facebook’s settings.
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 news feed” you’ll get these options:
If you set it to “See first”, our posts will almost always show up in your news feed. 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.
If you’d like to connect with caregivers privately, join the conversation on our caregiver forums or our Facebook group.
- posts asking for support
- pictures of you and the people you love
- relevant articles from a variety of sources
We don’t share:
- posts containing personal details
- posts containing medical information
- advertising, even requests for donations
We encourage you to share the things you need to get off your chest, requests for advice, your personal caregiving experiences, and requests for donations on our forums.
Why are they ignoring my message?
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.
Want to know more? Mashable has a great guide for Facebook beginners.
Featured image: JaysonPhotography / Shutterstock.com
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.
1 in 36 will die of prostate cancer.
Nearly 3 million men in America are living with prostate cancer.
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.
The American Cancer Society provides more information to help you understand your PSA levels.
Digital Rectal Exam
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.
The American Cancer Society has a guide to understanding your pathology report.
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.
With active surveillance, your doctor will typically run tests every 6 months. Tests often include your PSA blood test and a digital rectal exam. Doctors may perform annual biopsies. Even if you ultimately do undergo treatment, you can enjoy additional months or years of life without worrying about side effects. Men who undergo watchful waiting have the same life expectancy as those who pursue treatment immediately.
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.
The American Cancer Society has information on what treatment options are still available if your cancer does not respond to hormone therapy.
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.
AJCC TNM staging
The American Joint Committee on Cancer TNM staging system describes how far the cancer has spread. It’s made up of:
- The primary Tumor
- The status of the lymph Nodes
- Whether the cancer has Metastasized
- The PSA level at diagnosis
- The Gleason score
The clinical stage is based on your doctor’s estimate from the DRE, lab tests, biopsy, and imaging. If you’ve had surgery, the doctor can determine the pathologic stage.
- T1: No tumor can be seen or felt
- T1a: Cancer is found during a TURP and is less than 5% of the tissue
- T1b: Cancer is found during a TURP and is more than 5% of the tissue
- T1c: Cancer is found by needle biopsy
- T2: The tumor can be seen and/or felt, but is confined to the prostate
- T2a: The cancer is in one half or less of one side of your prostate
- T2b: The cancer is more than one half of only one side of your prostate
- T2c: The cancer is in both sides of your prostate
- T3: The cancer has grown outside of your prostate
- T3a: The cancer is outside the prostate, but not in the seminal vesicles
- T3b: The cancer is in the seminal vesicles
- T4: The cancer has spread to your urethral sphincter, recutm, bladder, and/or pelvis
Lymph node staging
- NX: Lymph nodes have not been tested
- N0: Cancer has not spread to any nearby lymph nodes
- N1: Cancer has spread to one or more nearby lymph nodes
- M0: Cancer has not spread beyond nearby lymph nodes
- M1: Cancer has spread beyond nearby lymph nodes
- M1a: Cancer has spread to lymph nodes outside your pelvis
- M1b: Cancer has spread to your bones
- M1c: Cancer has spread to other organs
You can view the TMN classification for prostate cancer on Medscape.
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.
Cancer.net is an excellent resource for learning about how clinical trials work and finding clinical trails recruiting participants.
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.
Prostate cancer is slightly less common in men with diabetes. Some diabetes drugs have even been shown to aid prostate cancer treatment. However, other studies show that men with diabetes have more serious cases of prostate cancer.
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.
If you’re about to go to your first urology appointment, you can learn what to expect.
It’s common for urologists to perform surgery:
- Transurethral resection of the prostate
- Transurethral needle ablation of the prostate
- Sling procedures
- Opening blockages or making repairs
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
- Bladder cancer
- Prostate cancer
- Testicular cancer
- Penile 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.
Oncology dietitian nutritionist
A registered dietitian who is a certified specialist in oncology nutrition (RD CSO) can help you manage the side effects and symptoms of prostate cancer and treatment. You can learn more about what to expect when working with an oncology dietitian and how to get the most out of working together.
Remember that anyone can call themselves a nutritionist. An RD has a 4-year college degree, 6-12 months of supervised training, and is certified by the Academy of Nutrition and Dietetics and Commission on Dietetic Registration. An RD CSO has 2,000 additional hours of oncology training and passes a certification exam every 5 years. Some registered dietitian nutritionists refer to themselves as RDs, others use the term RDN. They both indicate the same training and certification.
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.
This is a great time to start introducing small changes to what you eat to make things healthier. Eat a little less meat and a little more veggies. Substitute unhealthy snacks with a homemade version or a healthier option. The Savor Health website has lots of tips on how to do this and our cookbook has 150 recipes for you to try.
This is the time to stop smoking and cut back how much alcohol you drink.
Learn more about using what you eat, and how you eat, to manage your treatment side effects.
Exercise has been linked to an increased survival rate for some cancers, like breast cancer and colorectal cancer. While it hasn’t been specifically studied for prostate cancer, which already has a very high survival rate, evidence suggests it could be helpful. Studies suggest brisk walking has a positive impact on prostate tumors. We know that people who are active have a lower rate of aggressive prostate cancers.
Learn more about how you can safely get fit, and stay fit, as a cancer patient.
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.
Cancer treatments are improving all the time. 1 in 3 men diagnosed with prostate cancer in 1975 did not live to see 1980. Your odds are a lot better today.
Living with cancer: Quality of life
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.
You can learn more from the American Cancer Society’s guide on sexuality for men with cancer.
Incontinence and urine leakage
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.
And, it’s a cliche, but don’t forget to take care of yourself. There are tools to help.
When not in treatment
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.
Preventing prostate cancer
Unfortunately, prostate cancer has not been clearly linked to any preventable risk factors. Some cancers have well documented causes, prostate cancer does not. Cancer Research UK has an excellent guide to known and possible factors influencing your risk of developing prostate cancer.
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.
Other prostate cancer resources
Prostate cancer guides
My Prostate Cancer Roadmap – Janssen Biotech, Inc.
Diet, Nutrition, Physical Activity and Prostate Cancer – World Cancer Research Fund International
After Diagnosis: Prostate Cancer – American Cancer Society
What’s new in prostate cancer research? – American Cancer Society
Harvard Prostate Knowledge: Patient Perspectives – Harvard University
Urological Care Foundation
National Association for Continence
Prostate Cancer Foundation
The Caregiver Space
ZERO: The End of Prostate Cancer
Men Who Speak Up
Prostate cancer blogs
MaleCare: Advanced Prostate Cancer
Invasion of the Prostate Snatchers
Living with Prostate Cancer
Prostate Cancer InfoLink
The Palpable Prostate
Yet Another Prostate Cancer Blog
Originally published on Savor Health
Caring for a loved one suffering with Alzheimer’s disease can be highly rewarding, but it can also be overwhelming, especially in the beginning as you start to think about changes you’ll need to make in order to keep them safe. There are many details to keep in mind, but fortunately there are also several tips available on how to complete small or simple upgrades and repairs to your home that will ensure your loved one is healthy and happy.
The best way to start is to go from room to room in the home and write down potential hazards or changes you know you want to make. Here are some tips to get you started.
Because Alzheimer’s strikes the elderly, it’s a good idea to start by thinking about physical safety. The bathroom is one of the most dangerous places in the home for an older individual, so you might begin by acquiring a soft faucet cover, a shower chair and rail, and a non-slip mat. It’s also a good idea to check your hot water heater and make sure the temperature is normal, and remove the door locks or install a chain lock that will be easy to cut should you need to help them.
The kitchen can also be a dangerous place, but considering it’s one of the most popular gathering places in the home, it’s important to make sure it’s safe and comfortable. Chairs should have non-slip tabs on the bottom and there should be no loose rugs that could be tripped over. Consider buying a stove that has removable knobs, and always keep at least one fire extinguisher nearby.
Baby monitors are wonderful tools when caring for a loved one living with Alzheimer’s, especially if it is in advanced stages. Having a way for them to be heard should they need assistance is invaluable.
Curtains are preferable over blinds for the windows, as long cords can be safety hazards. Ensure that dressers and heavy furniture are anchored to the walls, and apply pieces of foam or other soft material to the legs of the bed to prevent injuries to toes.
Remove clutter from any walkways and make sure there are no trip hazards. It’s a good idea to consider whether your loved one might need precautions against wandering, such as motion-sensor alarms. Lock up any dangerous items, such as knives or weapons, and install childproof latches on drawers and cupboards that contain things your loved one shouldn’t have access to.
Keep all walkways well-lit and maintained. Night lights can be helpful in bathrooms and in the kitchen for nighttime use. If necessary, close off stairwells to keep your loved one from suffering falls.
Motion-sensor lights are a good idea for outside areas, especially if you have a pool or hot tub or if there is a lot of furniture that could cause a fall. Always keep pool areas covered and locked up, and put away all pool-related equipment after use.
Lock up any tools or machinery, and if you have a shed or detached garage make sure there is a sturdy door with a lock on it.
While these are all certainly great repairs to make for your loved one, it’s important that if you decide to make any of them yourself that you practice DIY safety. Wear the proper protective gear and make sure you know how to handle tools properly. And don’t be afraid to call on a professional when you need one.
Taking care of a loved one who is living with Alzheimer’s can be difficult at times, but it’s important to remember that safety is the number one priority. Making sure your loved one is comfortable and has their needs met will ensure they have healthy, happy days.
Caroline James is passionate about fighting for senior mental health and support. Caroline and her husband createdElder Action after becoming caregivers for their aging parents, with the aim of providing useful information to aging seniors.
When discussing death, the words we choose can speak volumes.
In the 1970s and 1980s, Susan Sontag wrote about the metaphors that surround TB, AIDS and cancer, arguing that their use can add to the suffering of patients, stigmatising them and encouraging victim-blaming.
More recently, much has been written, often by people with cancer or other diseases, protesting against warfare metaphors. On a BBC World Service radio programme, writer and presenter Andrew Graystone says: “I had to try and love these cancer cells because I didn’t want to declare a civil war in my own body, I didn’t want to be a battleground.” Rob A Ruff, head of chaplaincy services at a Minnesota hospital, writes: “We rarely leave room in the warfare metaphor for the realization that some battles cannot be won despite everyone’s best effort.”
While some patient groups, charities and government bodies are removing references to fighting and battles from their documents, making way for discussions of journeys and pathways, others are still embracing these metaphors. Graystone writes: “the advertising agency that designed Cancer Research UK’s recent Race for Life campaign wanted to turn their traditional sponsored runners into ‘an army who run, dance and sing all up in cancer’s stupid stupid face with the new line of Cancer We’re Coming To Get You’.”
Professor Elena Semino and colleagues at Lancaster University have been studying how metaphors are used in communication about the end of life. Based in the Department of Linguistics and English Language, they have assembled a set of over 1.5 million words, collected from interviews and from online forums where patients, carers or healthcare professionals meet to talk with their peers. They used the words as a dataset to investigate how and when people in these groups use particular types of metaphors – whether related to sport, violence or any other theme.
This work has shown that, despite the backlash, violence metaphors are still used by people with cancer, in a variety of ways and to describe different situations. One of the most striking things for Semino is how often patients use them, and how often they’re empowering. “They use them to encourage each other,” she says. “‘You’re such a trooper!’, ‘keep up the fight!’”
One of the areas in which patients use these metaphors is when they’re talking about going into hospital or preparing to meet health professionals, especially consultants. Patients also describe the effects of the disease with violence metaphors (cancer attacking, invading or strangling them) as well as their response to it (being a fighter, sharpening weapons). They also use them to describe their treatment, their relationship with family and friends and even their own mental state (“I am destroying myself with my mind right now, torturing myself”).
“Metaphors are resources and tools for making sense of our experiences and expressing our emotions and our feelings,” says Semino. “Different metaphors are more or less appropriate for different people at different times – or even for the same person at different times.”
Semino and colleagues are now working on a ‘metaphor menu’ to help people with cancer talk about their disease, and are looking for feedback on the project.
“Hopefully by sharing our data we can help doctors know what to listen out for and react in a slightly more nuanced way – if something seems to be helpful, accept it or even use it.”