Right after the accident, my life was sort of glamorous in a weird, morbid way. Everyone stopped what they were doing to rally around and pitch in. We’re young, none of our friends had experienced this before, and we were lucky enough to have friends who went all out. It was so tragic — the last time some people had seen us was at our wedding, cue the tears. It felt like our life was a movie, only in the end he didn’t make a miraculous recovery.
After that, things stopped being a tragic love story and started to be a grind. People stopped dropping off meals and checking in all the time. Everyone else went back to their normal lives. I spent 2016 feeling like I was slipping further and further away from myself. From the life I’d planned for us. From the husband I’d just married.
But my husband is still here. I’m still here. And this is our lives. I can’t just float along from one day to another forever. So I’m making a New Years Resolution — or three — to take my life back.
Choose to do this every day
If you asked me if I would ever choose to be a caregiver, I’d tell you no. It doesn’t feel like I made a choice. It feels like something that happened to me.
I know that’s not really true. The accident happened to my husband, which happened to me. But that doesn’t mean rearranging the rest of my entire life to take care of him was the only option. Yes, all of the options were terrible, but they were still options. Leaving him didn’t occur to me as a choice because I would never do that to someone I love so much, but I could have and I still could. Every moment of every day is me continually choosing to stay with him, ’til death do us part.
In a weird way, thinking about all of the things I could do instead of caring for him makes each day easier. Because for me any of those options would be harder.
My life felt like it was spiraling out of control. Remembering that I am choosing to do this — every moment, good or bad — makes me feel like it’s my life. My life isn’t on hold or being sacrificed or taken away from me, this is the life I’m choosing for myself.
I’m going to remember that this is what I want to do.
Do one thing for myself every day
It doesn’t take long to lose yourself as a caregiver. Everything is about my husband. Or, really, not about him but his needs. He’s not a spoiled child; he’s not getting any of the things he wants, either. I spend more time doing things for the hospital than doing things that are actually for my husband, like the cute, thoughtful things we used to do for each other.
At this point, I don’t even know what I want anymore. The things I used to enjoy seem completely irrelevant to me now. Or plain out impossible. I’ve changed so much and I want to get to know this new version of myself.
Maybe I’m going to get back to doing 5-minute sketches in the mornings. Or occasionally putting on makeup, just because. We can’t really go out, so maybe it’d be fun to make a nice dinner at home. Maybe it’s just giving myself permission to daydream, even though there’s always a chore to be done.
I’m going to get creative and think of things that aren’t expensive. Self-care doesn’t require a life coach or a credit card. It’s just listening to my own needs.
The one thing I might spend money on myself for is my own health. I used to think getting sick wasn’t an option with work. Ha! Now I want to be healthy for myself and my husband more than ever before. I’m going to make sure I get a checkup, go to the ob-gyn for an annual, do all the recommended screenings for my age group, and eat a little healthier. Hopefully coordinating to be able to do those things will mean more time for us together in the future.
I’m going to get to know this new version of myself.
First, let’s admit that I don’t really understand Snapchat. Luckily for me, it seems like no one over the age of 17 does and all of my friends are over 17, so we’re good. None of us know what the heck we’re doing or how those filters get added or what it means. This is why I had it installed on my phone for a really long time (in smartphone years) before I started using it.
But then one of my friends called me out for never viewing his snaps. When I told him I didn’t have anything exciting to send him, he told me I was missing the point. The point is hey, I’m thinking of you and I want you to be in my life. And he started sending me a barrage of the most boring snaps you can imagine. Waiting for his car to warm up in the morning. The silent elevator ride. The coffee cup on his desk in his cubicle. You get the idea. It was actually pretty fun and I had a whole new perspective on what it’s like to be him. And I started sending back boring snaps. He loved them.
Once I was checking Snapchat every day, friends I hadn’t heard from in ages started sending me snaps and I started sending them back.
When I was getting nonstop snaps from holiday parties I couldn’t go to, it was pretty hard. But let’s be honest that I was going to feel lonely and awful to be missing out no matter what. Instead of feeling forgotten, like all of my friends’ lives had moved on without me, here they were lighting up my phone every 20 minutes with silly little packets of hey, we love you and we miss you and we wish you were here.
I’m not going to make the holiday party next year, either. Being a social butterfly isn’t an option. But there are still ways to stay connected to my friends.
My goal for 2017 is to keep space for my friends in my life.
Why did we decide to become a family caregiver? Because we put our loved ones first and want the best for them. We want them to be happy and as healthy as possible. Part of our duty as caregivers requires the administering of medication. Adhering to a medication plan can be a challenging task for any individual, let alone caregivers, who hold a far greater responsibility.
According to a study by the World Health Organization 50% of all prescribed medications are either taken incorrectly or not at all. This can be fatal: In the US alone approximately 125,000 people die annually as a result of not following the doctor’s prescription.
This is a very frightening statistic.
Fortunately there is now a simple way to manage treatments and keep an overview of one’s progress: The MyTherapy app.
You might think: “Well, fine – another pill reminder.” but MyTherapy is much more than that. It unifies a person’s whole treatment in one application. The free app transforms a therapy into a to-do list which motivates people to complete it and fulfill their responsibilities. The app allows you to set reminders for medications, record measurements like blood pressure and even enter activities. Your smartphone will help you stay organized and on top of your responsibilities. But that’s not all.
MyTherapy also offers an integrated diary which is able to document all vitals. This is as useful for you and your loved ones as it is for the practitioners. With this tool your doctor will be able to easily identify health patterns and you will have a readily available overview of your progression. Before the next appointment, you can print out a personal health report to discuss. The well-structured report enables doctors to quickly identify and optimize a therapy plan for their patient.
There are two different ways that the use of MyTherapy can support you and your beloved one:
Only you as a caregiver use MyTherapy:
If you decide to become a “digital caregiver” with the support of MyTherapy you will benefit as the app simplifies your daily routine. The app enables you to easily make sure that your loved ones remember all their responsibilities. It will be easier to make sure they stick to the individual therapy plan, take their meds, work out and remember their measurements. This will eliminate the stress of having to remember everything – the use of MyTherapy gives you peace of mind and enables you to spend more quality time with the person you care for.
Your beloved one uses MyTherapy and you connect to him or her via the team function:
Of course it is also possible that your loved one may wish to feel less dependent and might like to take control of his or her therapy. The app will then simplify the daily routine and ensure a lot of self-responsibility. You as caregivers have the opportunity to connect via the team function and be his or her personal safety net. You will be able to see the status of medication as well as the therapy progression and their vitals. Most importantly, you are able to see if all medication is taken properly and in case your loved one forgets to do something, you can be the additional reminder.
The outstanding ease of usability for patients of all age groups has been proven many times. Also, MyTherapy’s impact on medication adherence has been demonstrated by several studies with reputable research institutes including Germany’s largest university hospital Charité Berlin. Recently MyTherapy was awarded with the Kindness for Kids Award for “MyTherapy DermaKids”, a collaborative-project with the University hospital of Munich (LMU). MyTherapy was started in Germany and strictly protects data privacy: you can use the app without subscribing and your personal data will not be shared with third parties. The MyTherapy app is free of charge and can be downloaded in the Google Play Store and in the App Store.
MyTherapy is the app for caregivers and the people they care for. Of course it can never replace the physical care and our unconditional love. But it can help to simplify daily routines and formulate an insightful overview for personal and professional use. Have a try and see how it can support you.
My name is Patrice Marie White, I’m from the UK.
I am a former fulltime caregiver for my late mother.
The other day, I was guided to draw something in a childlike way that illustrates and depicts a scenario faced, both as an adult caregiver and as a child caregiver.
1am #nilbymouth #hospitalroom #bloodpressuremachine, #stilldarkoutside #disabledtoilet #hospitabed #Sidetable #Overnightbags ect : A Rough child-like #Illustration #Drawing of #pasttime #Adultcarer #ChildCarer #Scenario #Example situation many *have* *will*or *are* facing.
Woman reaching for #medicalnotes #careplan is me, so is the little girl holding a toy. #TIMELINE #Caregiving #Carer #YoungCarer #Youngcarers the saga STILL continues for many. <3 #neverforget
A new study found that more socially isolated breast cancer survivors had higher rates of recurrence and mortality, while women with larger social networks experienced better outcomes. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the study found that some types of social ties were beneficial, while others were not, and that some types of relationships only benefited patients in certain racial or age groups.
For the analysis, Candyce Kroenke, MPH, ScD, of the Kaiser Permanente Division of Researchin Oakland, California, and her colleagues examined information on 9267 women with breast cancer to see how patients’ social networks within approximately two years following their diagnosis might affect their survival.
Over a median follow-up of 10.6 years, there were 1448 cancer recurrences and 1521 deaths (990 from breast cancer). Compared with socially integrated women, socially isolated women had a 40 percent higher risk of recurrence, a 60 percent higher risk of dying from breast cancer, and a 70 percent higher risk of dying from any cause. These associations were stronger in those with stage I/II cancer. Specific associations differed by age, race/ethnicity, and country of origin. For example, ties to relatives and friends predicted lower breast cancer–specific mortality in non-White women, whereas having a spouse predicted lower breast cancer-specific mortality in older White women. Community ties predicted better outcomes in older Whites and Asians.
“It is well established that larger social networks predict lower overall mortality in healthy populations and in breast cancer patients, but associations with breast cancer–specific outcomes like recurrence and breast cancer mortality have been mixed,” said Dr. Kroenke. “These findings, from a large pooled cohort of nearly 10,000 women with breast cancer, confirm the generally beneficial influence of women’s social ties on breast cancer recurrence and mortality; however, they also point to complexity, that not all social ties are beneficial, and not in all women.”
Dr. Kroenke added that clinicians should assess information on social networks as a marker of prognosis and should consider that critical supports may differ by sociodemographic factors. Also, she stressed the need for additional research to understand the mechanisms through which social networks influence outcomes so that effective interventions might be developed.
Full Citation: “Post-diagnosis social networks and breast cancer mortality in the After Breast Cancer Pooling Project (ABCPP).”Candyce H. Kroenke, Yvonne Michael, Elizabeth M. Poole, Marilyn L. Kwan, Sarah Nechuta, Eric Leas, Bette J. Caan, John Pierce, Xiao-Ou Shu, Ying Zheng, and Wendy Y. Chen. CANCER; Published Online: December 12, 2016 (DOI: 10.1002/cncr.30440).
Janet Byron, Kaiser Permanente Senior Communications Consultant
CANCER is a peer-reviewed publication of the American Cancer Society integrating scientific information from worldwide sources for all oncologic specialties. The objective of CANCER is to provide an interdisciplinary forum for the exchange of information among oncologic disciplines concerned with the etiology, course, and treatment of human cancer. CANCER is published on behalf of the American Cancer Society by Wiley and can be accessed online at http://wileyonlinelibrary.com/journal/cancer.
Follow us on Twitter @JournalCancer and Facebook https://www.facebook.com/ACSJournals
Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical, and scholarly journals, combined with our digital learning, assessment and certification solutions help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.
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.
A new analysis points to surprisingly low rates of serious impacts from medication errors affecting nursing home residents, despite the fact that these errors remain fairly common. The investigators noted that it’s unclear whether medication errors resulting in serious outcomes are truly infrequent or are under-reported due to the difficulty in ascertaining them. The findings are published in the Journal of the American Geriatrics Society.
Medication errors can cause considerable harm, and older adults in nursing homes may be especially vulnerable. To assess the prevalence of medication errors leading to hospitalizations and deaths in nursing home residents, and to determine the factors associated with these errors, Joseph Ibrahim, MBBS, FRACP, PhD, an academic physician in geriatric medicine at Monash University in Australia, and his colleagues conducted a literature search of relevant studies published between 2000 and 2015. After identifying 11 studies, the researchers examined three types of medication errors: all medication errors, transfer-related medication errors, and potentially inappropriate medications.
Medication errors were common, involving 16 percent to 27 percent of residents in studies examining all types of medication errors. Transfer-related medication errors occurred in 13 percent to 31 percent of residents, while 75 percent of residents were prescribed at least one potentially inappropriate medication.
The team found that serious impacts of medication errors were surprisingly low, however, and they were reported in only zero to one percent of medication errors, with death being a rare event.
“This is an important step to addressing the global issue for improving the quality and safety of medications for older people,” said Prof. Ibrahim. “Nursing homes should review their systems of care from prescribing to administration. Good practice requires using a team-based approach involving the resident, care and nursing staff, pharmacists, and medical practitioners.”
Article: “A systematic review of the prevalence of medication errors resulting in hospitalization and death of nursing home residents. Noha Ferrah, Janaka J. Lovell, and Joseph E. Ibrahim. Journal of the American Geriatrics Society; Published Online: November 21, 2016 (DOI: 10.1111/jgs.14683): http://doi.wiley.com/10.1111/jgs.14683
The Journal of the American Geriatrics Society is a comprehensive and reliable source of monthly research and information about common diseases and disorders of older adults. For more information, please visit http://wileyonlinelibrary.com/journal/jgs.
Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical, and scholarly journals, combined with our digital learning, assessment and certification solutions help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.
Every Christmas season I work myself up into a panic. As a busy caregiver and a mom, Christmas just feels like a lot of work. I’m determined to not stress out this holiday. Maybe I’ll even enjoy myself.
Here are the promises I’m making to myself this Christmas:
This is not my life. And that’s okay.
I am not going to make Pinterest perfect Christmas cookies
I’m not even going to try. We might bake cookies that look like lumps of coal. That’s just fine. Maybe I’ll even just buy cookies this year. And I’ll eat too many of them.
I am not going to send out Christmas cards
We all love getting Christmas cards, but it’s okay to not have time this year. I’m not going to feel guilty about it. A Facebook post or an email is just fine. And it’s totally fine that the kids are not going to sit still for a photo. It adds character.
I am not going to make Christmas dinner from scratch
It’s just not worth the time and effort. Stuffing out of a box is still delicious. The important thing is to spend time with my family and enjoy myself.
I am not going to get the perfect gift
I’m not going to wait in lines. I’m not going to obsess about it. I’m going to get presents, sure, but that’s not going to be the main way I show my love and appreciation for the people in my life.
I am not going to complete my to-do list
Ever. And that’s okay. I’m going to work on not putting things on there unless they really need to be done.
I am not going to go to everyone’s Christmas party
Actually, I never go to everyone’s Christmas parties. The real promise is that I’m not going to feel bad about not going. I have my priorities and they’re just fine. If there are some hurt feelings, people will need to understand that spending quality time with me can’t be lumped into a group event.
I am not going to regret what I didn’t do in 2016
I’ve done the best I can. I’m pretty impressed with myself. I’m going to leave it at that.
I remember when I loved Christmas and New Years. Before my mother got sick.
We try to pretend we’re a normal family at Christmas still. It doesn’t work.
Christmas planning used to be fun, if a little stressful. What new recipes should we try? What old favorites do we include? Which uncle will fail to RSVP and show up half way through dinner?
Maybe we weren’t going to be a TV family any time soon, but we had our moments. Christmas was about the little kids.
We try to pretend my mother’s illness doesn’t overshadow everything. We’re not kidding anyone.
The layers of planning for a holiday dinner are astronomical. Either we change all the recipes to things that are safe for her to eat, or we make two versions of everything. Every sentence is interrupted by the beeping and whirring of machines — or something she needs.
Every moment of every day is modified by her illness. Normally it doesn’t bother me. This is our life, this is our normal.
But there’s something about the holidays that really gets me down.
I’m no longer excited to stay up late to watch the ball drop. I just want to go to bed.
Normally I don’t feel like I’m missing out. My friends lead their own lives, I don’t need my life to be like theirs.
But at Christmas everyone else is sitting around opening gifts, spoiling the little kids, being an ideal of a family. On New Years we’re all looking forward to a brighter, better future.
And we can’t do that.
I wish we could do that.
Family Caregivers to Receive Free Meals Monthly Throughout 2017
Contest Goal is to Spotlight the Value and Selfless Commitment of Caregivers
Seniorlink, Inc., a leading caregiver solutions company, announced a call for entries for “Thank You Caregiver Nation” – a new contest focused on raising awareness of family caregivers – the many silent heroes who provide care and comfort to a loved one.
The contest will feature twelve winners, with one winner selected for each month of 2017. Each winner will receive a credit to purchase meal options from PeachDish, a nutritious meal kit delivery company. The winners can use their PeachDish credit to order fresh, farm-to-table ingredients to cook meals for their families, and reduce the stress of food shopping and meal planning.
There are an estimated 44 million caregivers in the United States today. They are the partners, spouses, sons, daughters, friends and loved ones who carry out a daily mission of compassion, hope and assistance. Through their commitment they provide dignity and comfort to a family member or loved one in need of care.
“Seniorlink stands alongside family caregivers as they fulfill their vital role in their loved ones lives,” said Thomas P. Riley, CEO of Seniorlink, Inc. “Caregiving can take a physical, financial and emotional toll. This contest is our way of saying thank you – and showing our unwavering commitment to provide the highest quality resources, advocacy and insights for caregivers and their families.”
Individuals wishing to nominate a caregiver, or themselves if they are a caregiver, have until midnight on December 31, 2016 to register at www.tycaregivers.com. All that is required is an email address and a short written entry outlining why the nominated caregiver should be recognized. Winners will be randomly selected from a pool of applicants and notified via email.
See www.tycaregivers.com for complete contest terms and conditions.
For more than 16 years, Seniorlink has pioneered solutions for caregivers across the nation, helping them provide their loved ones with the highest quality care. Seniorlink’s unique in-home care solution, Caregiver Homes, dedicates experienced care teams to work alongside caregivers and their families, offering coaching and support at every step. This model, known as Structured Family Caregiving, was the first home and community-based service in the nation to receive the National Committee for Quality Assurance’s (NCQA) highest level of Accreditation for Case Management.
To move from supporting thousands to millions of caregivers, Seniorlink has developed Vela, a caregiving platform that brings compassion to technology and assists caregivers as they navigate the complex and sometimes overwhelming world of caregiving. Vela transforms the caregiving experience by connecting care partners directly with caregivers to provide them with the coaching and insights they need along their journey, ultimately improving outcomes and lowering costs for their most complex, vulnerable members. To learn more, go to www.seniorlink.com and follow on Twitter @SeniorlinkInc.
NCQA is a private, non-profit organization dedicated to improving health care quality. NCQA accredits and certifies a wide range of health care organizations. It also recognizes clinicians and practices in key areas of performance. NCQA is committed to providing health care quality information for consumers, purchasers, health care providers and researchers.
Celebrating the freshest ingredients with Southern-inspired food full of innovative flavor, PeachDish delivers a refrigerated box to your doorstep with ingredients and recipes to cook dinner at home. Customers choose from at least eight different menu options each week, including at least three vegetarian dishes. While purchasing produce at the season’s peak to achieve the most flavor and nutrition, the company works directly with farmers and purveyors to source ingredients local to the Southeast, which has an especially long growing season. Boxes are priced depending on number of servings ordered, and shipping location around the U.S. Order as often as you like, with free shipping for regular subscribers.
The moment of diagnosis is emotional when the diagnosis is dysphagia or swallowing disorder. It is a big challenge for caregivers. When a person has a swallowing disorder, suddenly, from that moment forward, it’s all puree. For the newly diagnosed, this is an emergency. The whole family, patient and caregiver, are in a new moment. They must respond.
I was my mother’s principal caregiver for five years. When she was diagnosed with dysphagia, as the result of dementia, I was on my own. I approached this task as a journalist. I researched the available cookbooks and found them wanting in practical advice, the how to do it. I researched the foods available commercially and found them to be poor examples of nutritional healing.
I interviewed professionals in all the relevant fields, from physicians to dietitians and speech language pathologists to nurses and nurses’ aides. I got an editorial review from a top dysphagia care expert.
Essential Puree: The A to Z Guidebook — This is the volume that I wish I had when my mother got the diagnosis.
Essential Puree aids in the transition, takes away the moment of confusion and even fear. This is for helping the caregiver shoulder the responsibility of feeding, whether the caregiver is a family member or a professional caregiver, whether the patient is at home in a home healthcare situation or in a healthcare facility. Nutrition for the Elderly is important, and it is vastly overlooked.
Essential Puree marries the art of fine food with the science of puree. Just because the form of the diet changes, does not mean you have to give up flavor. I teach the biggest secret to the art of puree. The sauce is the medium of flavor.
This volume takes the reader from the moment of diagnosis step by step through the setting up and running of a puree kitchen. It is fast, easy, organized and smart. The pantry, the freezer, the fridge, food storage and labeling. The book celebrates clean eating and nutritional healing. It is all about flavor, flavor, flavor.
This book includes 67 family recipes for classic American comfort foods done in a healthy manner. The recipes and their variations have been handed down for generations.
I also include a section called The Science of Puree, with information about the National Dysphagia Diet, Instant Thickeners for food and for beverages. This was contributed by the dysphagia care expert, Laura Michael, a member of the board of the national Foundation of Swallowing Disorders. I tested the best kitchen appliances for simplifying the labor or food preparation, storage and cleanup.
Patient and caregiver may try free recipes, posted in my Blog at the Essential Puree website.
I offer a Free Download, Shake, Rattle and Roll, for creating three nutritionally dense shakes, ready in a flash.
These are classic American shakes, the Miami shake, the Memphis Shake and the Motown Shake. Better-tasting than anything you could buy off the shelf, with no white sugar, preservatives or chemicals. Check out the e-book.
Essential Puree is available in print and eBook editions on the website, and at Amazon and other online sources.
Diane Wolff has been published in “The New York Times, ” “The New York Times Book Review, ” and the “Chicago Tribune”, among others, for her work on China and Tibet.
I do this work in my mother’s memory, that what I created for her may be of benefit to others.
I have recently done a dessert tasting at the New York charity God’s Love We Deliver, and I do lecture demonstrations at the stroke centers of Bayfront Medical and Fawcett, here in Port Charlotte, Florida, where I live.
It’s decision time for the 55 million Americans covered by Medicare.
Open enrollment, when people can enroll in Medicare or make changes to their plans, runs every year from Oct. 15 to Dec. 7. But anyone who thinks that signing up for the medical plan for seniors is simple could be in for a rude awakening – and a costly one.
“People need to realize that enrolling in Medicare can be complicated,” says Chris Orestis, a senior-care advocate and author of the books “Help on the Way” and “A Survival Guide to Aging.”
“If you don’t pay attention you can end up missing needed coverage or paying more out-of-pocket expenses in premiums, co-pays and deductibles than you realize – or can afford.”
This year open enrollment comes during a presidential election and a time when there are concerns about Medicare’s long-term future and whether it can remain solvent. At the final presidential debate, Donald Trump and Hillary Clinton were asked what they might do to make sure the program, first implemented in 1965, will be there for seniors for decades to come.
Trump said he would grow the economy, which in turn would help Medicare. Clinton said her plan is to reduce the cost of health care and to emphasize wellness.
But any future political decisions about Medicare can seem far off to anyone whose main concern is figuring out how they fit into what’s offered right now, says Orestis, CEO of Life Care Funding.
He says some important things to keep in mind or understand during Medicare enrollment include:
Medicare coverage comes in two primary forms that participants can choose from. They are original Medicare, the traditional program administered through the federal government which anyone 65 and older qualifies for automatically, and Medicare Advantage plans, which are sold by private insurance companies. The Advantage plans sometimes offer additional services, such as routine vision, hearing and dental care.
Most people probably have heard references to Medicare Part A or Medicare Part D. Here’s how that alphabet breaks down: Medicare Part A pays for hospital and skilled nursing facility care. Medicare Part B pays 80 percent of costs for doctors, outpatient services and medical equipment. Medicare Part C is a private Advantage Plan. Medicare Part D pays for prescriptions.
Anyone who visits a doctor or has been hospitalized knows that deductibles and co-pays can add up quickly. That’s where Medicare Supplemental Insurance (Medigap) comes in. It’s a private insurance that pays the gaps in the varieties of Medicare coverage.
Want to learn more? Orestis says a good place to check is the Center for Medicare and Medicaid Services website, which provides a wealth of information and resources to review and assist enrollment.
Orestis says it’s important to act as soon as possible and not wait until the last minute.
“When it comes to Medicare enrollment,” Orestis says, “not being informed and missing deadlines can cause delays and penalties that could have a negative impact on your coverage – and your wallet.”
Chris Orestis is CEO of Life Care Funding and a 20-year veteran of both the insurance and long-term care industries. A former Washington, D.C., lobbyist, he is a nationally known senior-care advocate and author of the Amazon best-selling books “Help on the Way” and “A Survival Guide to Aging.”
Orestis also is a legislative expert, featured speaker, columnist and contributor to a number of insurance and long-term care industry publications. He is a frequent guest on national radio programs, and has been featured in the Wall Street Journal, the New York Times, USA Today, Fox Business News and PBS.
Caregivers are trusted allies, so it’s no surprise that many people reach out to them for advice and guidance when it’s time to choose a Medicare plan.
There’s a large and growing number of people who are serving as caregivers to their parents, relatives and friends, many of whom don’t have the resources to conduct their own research. According to the National Caregiver Alliance, “approximately 34.2 million Americans have provided unpaid care to an adult age 50 or older in the prior 12 months.”
Caregivers are also clearly stretched for time, since many of them are working full-time jobs in addition to caring for a loved one.
So, if you’re a caregiver, help is on the way. Here are five simple tips to help evaluate Medicare plan options and aid in the enrollment process for 2017:
Allow yourself plenty of time
The Annual Election Period (AEP) for Medicare Advantage and Medicare prescription drug coverage began last month and runs through December 7. As the caregiver, make sure you and your loved one start early so you can make the right decision. Great sites, such as Medicare.gov and humana.com/medicare, are excellent online resources for finding the right plans for the loved one you care for.
Confirm the prescriptions your loved one needs
Managing prescriptions drugs is not easy. When researching Medicare options, be sure to conduct an inventory of the prescriptions your loved one is taking. Write down the names, the dosages, when and how they are taken, and, where they’re being filled. Make copies of this list so loved ones and friends are in the loop, too.
Discuss preferences for doctor visits
If the person you’re helping to enroll in a Medicare plan is comfortable with a primary care physician coordinating their care within a network of Medicare-approved doctors, a Medicare Advantage HMO plan may be a good fit. HMO plans often have a low or even zero monthly plan premium, although the person you’re caring for will typically need to continue to pay his or her Part B premium. If the person you are caring for wants more flexibility in choosing a doctor, a Preferred Provider Organization (PPO) or Private Fee-for-Service (PFFS) plan may be a good plan option. There are also Medicare Supplement insurance plans, which allow more options for selecting a doctor. These plans don’t provide prescription coverage but a standalone prescription drug plan can be purchased as well.
Balance the budget with health care needs.
Many people with Medicare are living on fixed incomes. This makes it critical to review any current Medicare health plan and take a close look at how much has been spent on health care during the past year. Be sure to include hospital expenses, pharmacy costs and doctor bills. This will help to determine—to the best of your ability—the health care expenses expected in 2017 and whether his or her current Medicare health plan still fits within the budget and household finances.
Communicate clearly with the care team
Involve everyone who needs to take part in making these decisions – children, siblings, friends, and other caregivers. By working together as a team–like you do in caregiving—you’ll be able to gather the best information. Others may have done this before, so share knowledge as you go.
Make sure you look at all plan options, including Medicare Advantage plans, the private alternative to Original Medicare. Medicare Advantage plans often offer zero or low monthly plan premiums (although, Part B premiums typically must continue to be paid), set cost-share, and lower or no deductibles compared to Original Medicare. These plans also offer maximum out of pocket cost protection.
Caregiving is a difficult task, but choosing a Medicare plan doesn’t have to add to the stress if you follow these simple tips.
By Jeff Fernandez, Vice President, Humana Medicare West Segment
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.
Many people want to help a friend or neighbor who may have a mental illness, but they don’t know where to start or what to do. The feeling of helplessness can be paralyzing and many wind up doing nothing and walking away feeling guilty that they could have done more.
To find your way in caring for someone with a possible mental illness, follow these steps to educate yourself and become comfortable meeting your friend or neighbor’s needs.
- Recognize what you can’t see. People with mental illness can lead very successful lives. For example, anxiety is one of the most common – and often hidden – forms of mental illness – 18.1 percent (42 million) of American adults live with anxiety disorders.1 It’s important to remember that mental illnesses are rarely visible. Mental illness should never define the person. See your friend or neighbor for who they are first, not their illness. Just like for anyone else, some days will be better than others. Be patient. One day could be normal and the next could be the day they really need you.
- Avoid stigmas associated with mental illness. The stigma that is often attached to mental illness is that it leads to violent behavior. Statistics show that it is the opposite; adults with mental illness are more likely to be victims of violent behavior than perpetrators. In order to overcome stigmas, it’s important to distinguish the behavior from the person. For example, substance abuse can be used as a coping mechanism for mental illness. Substance abuse coupled with a mental illness can lead to unpredictable or dangerous behavior if left untreated. Approximately 10.2 million adults have both mental health and addiction disorders.1
- Provide a supportive environment and culture. While we all want to help, we must acknowledge that as a society we’re not quite there yet. Our culture still has to work to do to be more supportive to those with mental illness. Many people struggle alone with mental health symptoms every single day. To help those around you who may have a mental illness, do your part in creating a culture that acknowledges mental illness and the underlying challenges people with mental illness face. Let them know it’s okay to get help. Let your friends and neighbors know they are not alone and help direct them to places that can help with their specific needs so that everyone can function in a safe and healthful society.
- Overcome challenges to getting and giving help. Depending on the resources in your area, getting help for mental illness can be complicated. Don’t feel like you have to bear the responsibility of rescuing a friend or neighbor with mental health symptoms on your own. The system may not be easy to navigate, so if you are not a professional in the field, find someone who is and ask them what to do. It’s okay for caregivers to get help too. Remember that mental illness can lie dormant some days or years and then a life-changing event could cause symptoms to reoccur. Have a quick number to call a local resource that is available in short order should your friend or neighbor need short term help.
- Demonstrate unconditional love and be inclusive. At the end of the day everyone needs to know they are cared about regardless of their situation. Caregivers of any ability can help their friends with mental illnesses connect with others, socially and professionally, and help them avoid isolation. Kindness is at the root of all caregiving. As author Henry James once said, “Three things in human life are important. The first is to be kind. The second is to be kind. And the third is to be kind.”
- Don’t forget about caring for yourself, too. Caring for someone who has a mental illness can be a difficult endeavor. In order to keep helping and loving them best, make sure you continue to remind yourself that the illness does not define your relationship. You should also remember that getting help is okay and that applies to you, too.
These are some very basic principles to caring for someone who may have a mental health problem. If you take anything away from this article it’s these things:
- Your friend’s illness does not define who they are;
- Do not allow mental illness to define your relationship; and
- Remember that much is out of your control and that is okay, you can help find the resources your friend needs.
No matter what mental illness your friend or neighbor may face, the best thing you can give them is the reassurance that someone cares. The rest will fall into place.
By Donna Gallup, CEO and president of American Family Housing
Donna Gallup, M.S.W., L.S.W., is president & CEO of American Family Housing and a lifelong human services advocate who has tenaciously worked to benefit disadvantaged individuals and communities. Gallup is currently getting her doctorate at the University of Southern California for organizational change and leadership. With decades of experience in housing and community development, fundraising and social services, Donna possesses a unique and comprehensive understanding of the issues affecting the homeless population in California and across the USA. A New Jersey native, Donna holds a Master’s Degree in social work from New York University and has worked extensively with special needs populations, including the homeless, adults with mental illness, survivors of domestic violence and sexual assault, vulnerable families, and persons living with the challenges of addiction. Within the last decade alone, she has helped secure over $21 million for property acquisition and rehabilitation, operations, and services to develop supportive housing for the homeless and mentally ill. Prior to joining AFH, Donna served as CEO of the LAMP Community located on Skid Row in Los Angeles and in December 2013, the ACLU SoCal honored her at its Bill of Rights Dinner with the Human Rights Advocate award.
1 National Institute of Mental Health. www.nimh.nih.gov
On December 12, 2001 an event unfolded into a life-changing experience for my family. My brother-in-law, Rodney, was in a car accident that on the surface appeared to be an urban collision. In my mind, it could not have rendered the life threatening catastrophic injuries that it wrought. However, the accident was freakish and Rodney’s injuries were profound.
The first few weeks after the initial shock of the accident, the reality of becoming a caregiver began to take shape. My husband was the logical choice for the decision making that had to happen. Without a long-term view of the requirements needed, my husband and I embarked on what has become a 15-year journey of discovery, success and pain.
In the initial months after the accident, Rodney was in a coma and non-responsive. He was breathing through a tracheostomy and fed with a tube directly into his stomach. The best advice at this time was to accept his condition and find an institution that would accept him. Living in Australia, this is an impossible task, as no nursing homes had places available for a young person with such profound injuries. This was the reason why my family cared for him. Rodney needed a home and intense therapy to retrain his brain and begin his long journey to recovery.
Luckily, we had the help of an amazing neurological nurse who spoke to us about the brain’s ability to recover some function. She told us to keep talking to Rodney, ask him questions, and play games to stimulate healing. My husband and I were working full-time and our children were in primary school, but we made time for daily visits and extended periods of therapy. Eventually, we saw progress. The neurologist simply insisted that we were just seeing what we wanted to see. Some of Rodney’s movements appeared to be reflexes, but not in response to stimuli. I knew the doctor was wrong. The first breakthrough was the catalyst for us to continue with purpose. We were working with a small soft ball that we had to place in Rodney’s hand. My son, who was only nine at the time, was taking his turn. He would prise his uncle’s fingers open, place the ball in his hand and gently unfurl his fingers to remove the ball. In what must have been a moment of boredom on my son’s part, he asked his uncle to throw the ball. Rodney’s fingers opened and the ball rolled towards the edge of the bed. It was a response.
From that humble beginning, we commenced a long process of finding the right place for his care and the right therapists to work with him. In 15 years, we have witnessed a significant awakening. While Rodney’s brain injury is profound and permanent, he is not. He is in a wheelchair and has limited physical movement of his upper body. However, he has learned to speak, feed himself and participate in decision-making concerning his care. We have been able to purchase and renovate his home to accommodate his needs. An appropriate care provider does the daily supervision, feeding and personal care for him. He has taken vacations and participates in family activities with us. But these things did not happen overnight. It has been a process of responding to his changing needs. It has taken thousands of hours, phone calls and meetings. There have been nights without sleep, sudden and terrifying declines and many nights in intensive care. It has been frustrating, heartbreaking and exhausting. There have been many times when we have wanted to throw in the towel and say that it has to be someone else’s turn. However, we have persevered.
This is because we have been able to do this as a family. While my husband has taken the lion’s share of the work, it has only happened because we were all in this together. It was a decision to accept that this was our challenge. Together, we have moved forward and Rodney has had the best chance to live a positive and enriched life despite his disability.
When a car accident is reported, people are aghast at the images of broken cars, the horror of the injuries and loss of life. Few ever consider what the long-term complications might look like for someone with a brain injury. They also don’t usually consider what the future looks like for the family who takes on the care of the now disabled family member. It is never something you would expect. It might even be something you think you could never do. Perhaps 15 years ago we might have had that same thought. Like many challenges, it seems impossible at first. But you never know how strong you can become in the face of relentless negativity when faced with a life-changing responsibility.
Caring for someone with a disability is complicated. Not caring is unthinkable.
Tracey Lee is an English teacher at St. Peter’s Anglican College and the author of “What Remains.” She has taught English and behavioral science for more than 30 years. Lee received her bachelor’s degree in education from the University of Tasmania and a master’s degree in creative writing from the University of Canberra. She resides with her husband in Malua Bay, Australia.
Almost 10 percent of the nation has diabetes, and avoiding diabetes isn’t only about lifestyle and diet. Some people are genetically predisposed to the disease: It turns out that children with a family history of diabetic complications will be more at risk for developing similar conditions. A recent study showed that the children of families with Type 2 diabetes and cardiovascular diseases may have an increased risk of cardiometabolic conditions. With the rising prices of so many drugs, including diabetic insulin, treatment for these life-threatening conditions are becoming more and more of a strain on family budgets.
But rising prices aren’t just plaguing people with diabetes. People suffering from any number of other common conditions — from heart disease and asthma to cystic fibrosis, arthritis and more – have seen the prices of their own medications skyrocket, and no end appears to be in sight. Prescription drug prices, which rose more than 10 percent in 2015, have continued to rise in 2016. After a set of major price hikes just months ago in January, prescription drug companies including AbbVie, Eli Lilly, Merck and Bristol-Myers are continuing to announce new price increases. Recent studies show that nearly one in three prescriptions go unfilled, often because of financial hardship.
So what can a consumer do about managing prices? It turns out, quite a lot. Here are a few ideas to save you money.
83 percent of consumers today don’t bother to comparison shop for prescription drugs. They should. Your strategy will vary, depending on your particular situation with insurance and brand-name drugs, but in almost any case you can find significant savings.
Prescription savings programs
Are you uninsured? If so, a prescription discount card could help. These discount programs offer varying levels of service, but in most cases they’re completely free, and most can save you money on the majority of prescriptions issued. My own company, RefillWise is absolutely free, works immediately, and can save as much as 80 percent. It’s also the only program that offers loyalty points good for cash back.
Understand your insurance deductible
Are you insured but with a very high deductible? Over 25 percent of employer-provided insurance plans are now high deductible plans. If so, you’re paying cash for any medication until you’ve paid your deductible, which often can be as high as $2,000. If you’re sure you’ll spend more than your deductible on prescriptions, then you may as well keep plugging away. For the rest of us who won’t even get close to that, a prescription drug savings card like RefillWise is again a great option.
Ask for a generic
Is this your prescription for a brand name medication? If so, always ask your pharmacist if there is a generic available. Generics can save you as much as 80-90 percent off of the price of a brand name med. If there is no generic available, your next step should be to check the manufacturer’s website for a discount. The drugmakers know how expensive their brand prescriptions are, and they have a lot of incentive to figure out a way for you to afford them. Some of these discounts are very generous and may even work for multiple refills. Failing that, you should check with your doctor to see if there is a similar but more affordable medication that she could prescribe.
It may take some legwork, but the potential savings and staying healthy are well worth the effort.
By Keith Jacobs, president, RefillWise
Keith Jacobs co-founded RefillWise in 2014 to help Americans save money on prescription drugs. His company negotiates on behalf of its network of more than one million members for discounts on virtually every prescription from more than 50,000 pharmacies across America.
When a child, teenager or younger adult falls, usually they’re able to pick themselves up from the ground and carry on as normal. When an elderly person suffers a fall, it is far more likely to have serious consequences. In our elder years, our co-ordination and perception diminishes, which naturally makes older people more prone to falling. Indeed, a third of all elderly adults will suffer a fall every year, and an older person who falls is twice as likely to do so repeatedly.
Falls in the elderly aren’t solely down to their physique. In many cases, their homes are not adequately equipped to minimize the risk of falling. Staircases might not have handrails, or they might have broken or uneven steps. There could be unsecured rugs on floors, as well as children’s toys which haven’t been safely put away. These are health hazards for people of all ages and the danger is amplified when you have an elderly person in the home who may not recognize these hazards so readily.
We have a duty of care to take all reasonably foreseeable steps to remove any fall hazards within the home if an elderly person is resident. We should also encourage our elders to go for regular medical check-ups so that a healthcare professional can make a judgement on the scale of the person’s risk of falling.
For ways in which you can immediately remove fall hazards in your home, check out this infographic from Home Healthcare Adaptations in Ireland.
Michael Leavy is the Managing Director of Home Healthcare Adaptations, an Irish provider of household adaptations for the elderly. The company aims to promote independent living within the home by installing modifications such as stairlifts, wheelchair ramps and walk-in showers.
It’s no secret unpaid family caregivers are suffering. In fact, research shows the burden of care negatively impacts the social and physical well-being of caregivers. As people age, most of them will likely pass the weighty mantle of caregiving to a family member. Still, there are ways to lighten the load, and families should start planning for senior care sooner rather than later.
Unpaid Caregiving Takes a Toll
A recent report shows caregivers disproportionately suffer depression, stress, chronic disease, and financial hardship. There’s also evidence caregivers take less care of themselves, while another study points to lower exercise levels. Exercise might alleviate stress, if only caregivers had the time and energy.
Stress and poor self-care combine with social isolation in a vicious cycle, straining relationships between caregivers and seniors. Some employers have added caregiver paid leave to their benefits packages to help curb the burden. However, there is another option: transitioning care to an assisted living community. Research shows this transition improves social well-being, alleviates stress and improves diet and exercise for many family members of seniors who need care.
Caregivers Are Better off When Seniors Move to Assisted Living
According to a recent survey, three out of five family members who moved a senior loved one to assisted living said their overall quality of life improved after the transition. Additionally, 64 percent feel less stress about the senior after the move. Moving a senior to assisted living also gives many family members more time for self-care. A third report healthier diet and exercise, and a quarter found their social well-being improved. Perhaps less stress and isolation leads three out of five families to say their relationship with the senior also improved.
Caregivers may feel guilty for shifting their caregiving burden, but most seniors benefit from moving, too. In fact, 73 percent of families report that a senior loved one’s quality of life improved after moving to assisted living.
Planning for the Costs of Assisted Living
Moving to assisted living is a major financial decision. Median costs are nearly $4,000 per month, but those are comparable to paid home care services after accounting for home repair, utilities, food and other costs included in assisted living rent.
Families who won’t qualify for government long-term care benefits, don’t want to hire someone to help legally transfer assets to qualify for Medicaid and don’t want to risk their future financial well-being should start planning for the costs of long-term care now.
Planning for retirement can seem complicated, but Andy Smith — Certified Financial Planner practitioner and co-host of the personal finance talk show, Investing Sense — offers the following tips to get started:
1. Establish Goals
Families should talk to senior loved ones about what they want their life to look like five or even ten years from now. Where do they want to live? How will they respond to changes in health and abilities? Families should write these goals down and refer to them while building and updating a plan.
2. Build (or Update!) a Long-term Plan
Chances are the first version of a long-term plan doesn’t account for changes to a senior’s living situation. If families want their plan to succeed, they should account for those possibilities. Families should also consider changes to their financial situation, including: a different Social Security strategy; a new income distribution plan; potentially higher healthcare costs; and a change to investment risk tolerance as the senior ages.
3. Cut Expenses, Increase Income and Leverage Assets
Consider retiring in a less costly area. For example, seniors in the San Francisco Bay Area can save $8,000 per year in assisted living expenses by moving to Sacramento. Seniors in California can save $11,000 per year moving to Arizona. Be aware of tax implications when moving between states and strike a balance between savings and proximity to family.
Consider alternative sources of income. If finances are tight, consider how to leverage current investments or pool family resources. There is also a range of financing options many families use, including long-term care insurance, Veterans Affairs benefits, selling life insurance policies or reverse mortgages.
Be careful with long-term care insurance and reverse mortgages. Some experts warn long-term care insurance may not be the right option depending on your financial situation. Likewise with reverse mortgages: these instruments are rarely the best option for most families, especially if homeowners plan to move permanently out of the home.
Get the most for your home. For seniors currently looking for assisted living, now is a great time to sell a home. Although the market is settling down, many areas still show low inventory and strong job growth leading to rapid appreciation and high prices.
4. Get professional help if possible
Building a sound retirement plan that accounts for changing living arrangements can be complicated. A fiduciary advisor is a professional who is legally obligated to put the family’s interests first as they help build a long-term plan.
Research shows quality of life improves for both caregivers and seniors after a transition to an assisted living community. When families are proactive in creating a long-term financial plan for their senior loved ones, they set themselves up for success for when the senior requires additional care. Early planning could potentially improve a family caregiver’s social and physical well-being as well as their relationship with their senior loved ones.
Read a technical report of A Place for Mom’s Family Quality of Life study here.
Ben Hanowell | Lead Senior Living Researcher | A Place for Mom
Andy Smith | Certified Financial Planner practitioner and co-host | Investing Sense
Over the past few years, my family has been involved with my grandmother’s battle with Alzheimer’s. I painted this portrait as a representation of her decline.
Nancy Jane, 2015
Oil on Canvas
16 x 20 in.
graduated from Texas A&M University-Commerce in December, 2015, with a Bachelor of Fine Art degree in Studio Art with an emphasis in painting. She has been accepted into the University of Houston’s Master of Fine Art program and will begin in the Fall of 2016. Her work is primarily two dimensional, focusing on painting and drawing. Currently, she is residing in Bellville,TX.
Learn more about Madison and see more of her work at madisonluetgeart.com
The following is an excerpt from Unexpected Gifts: My Journey with My Father’s Dementia.
My dad, Reuben Soldinger, was ill for nearly two years. His mind was confused about many things. Sometimes he thought he was at a hotel, not in a nursing home. Often he didn’t recognize my mother. Some days, he thought his son was his brother. But he was so much more than his forgetfulness. He was clever. He maintained a sense of humor. He still had a sense of amazement. He remained engaged in life.
His confusion defined his existence. He knew he was confused at least half of the time and wondered what he could do about it. He looked for the train, or he tried to do his job, or he gave a speech. But confusion was where he lived. He didn’t know his age, the year, or his surroundings, but he did know that he could still have an impact on things. He knew it until his last days.
On this path he went forward with his heart. His mind no longer shielded him from feelings that he didn’t want to face. Every emotion was authentic. There was truth in his interactions. Each moment was new, but it was also full of love, anger, or fear, and he had to travel through it.
Through this journey with my father I have been transformed. I walked the narrower path of being awake to the present moment. Before his illness, I had a very good relationship with my dad. Yes, it was laced with dramatic strife in my teenage years, miscommunications as adults, some disagreements and sometimes a lack of real understanding; but mostly he was my primary source of support and my loving guide for how to be in the world. Our relationship, as is true in most relationships, relied on past history for understanding each other. As this information became less available during his illness, I had the opportunity to see and hear him differently. The pain and the tragedy of it all was there, but so was the heart’s ability to love, and the ability to see and hear his spirit, and this became the avenue for many unexpected gifts.
Dad changed. And he grew. Growing happens all throughout life, even at the end. I recognized his spiritual and emotional shifts and asked many questions along the way. How does one walk with someone who doesn’t function within the social norms? How do I see to the needs of my beloved parent? And most important, how can I accompany him?
Accompanying Dad on this journey has been an honor. This writing is a tribute to who he was as a human being and a tribute to the growth that happens in every moment of life.
Thank you, Dad.
Eve Soldinger changes lives nationwide as a popular teacher, workshop leader, and practitioner of Medical Qigong, acupuncture, and Chinese Medicine. With Unexpected Gifts, Eve brings her transformative energy to open up new ways of understanding aging parents, caregiving, and loved ones with dementia. For more resources and information on speaking or workshops, visit www.evesoldinger.com.
Thérèse and Pierrot laughed together until his last day. It was their way to take care of each other, laughing and smiling. More than 30 years of Love.
Martine Côté is a photographer in Quebec City. You can see more of Martine’s work on her website, Facebook, or Instagram.
Join four seniors—Ed, Isobel, Alfred, and Roz–in this inspirational piece on positive aging as Bay Alarm Medical explores the amazing journeys, reflection, and life wisdom only seniors can offer.
“There are plenty of things to be anti about: anti-discrimination, anti-drugs, anti-oppression, anti-poverty and anti-sickness. Aging isn’t one of them. We need to become pro-aging and embrace the opportunities that aging provides.” – Jamie Lee Curtis
This video project aims to challenge the status quo on aging in a society obsessed with youth and show how growing older doesn’t mean you have to “grow old.” We also wanted to highlight the positive aspects of aging that are rarely heard about in the media, so we sat down with a group of seniors at the Pleasant Hill Senior Center (special thanks to Darlene Roth) to talk about what they’ve enjoyed most about their lives.
We also strongly believe our seniors are a relatively untapped treasure trove of knowledge when it comes to life lessons and wisdom, so we chatted about that, too. Specifically, we asked what advice they would’ve given their younger selves. We laughed, we cried, but most of all, we found their stories and lessons absolutely heartwarming and awe-inspiring. We hope you do, too!
Bay Alarm Medical provides consultation, technical support and customer service from our headquarters in California.
As a caregiver, caring for yourself is one of the most important and at the same time, one of the most often ignored things. Only when you are physically fit and healthy, then you can take care of someone else.
Caregiving is not easy; it can be an emotional roller coaster. Caregivers are often at increased risk of depression and excessive use of drugs, alcohol, and tobacco. Caring for someone or a family member demonstrates pure love and commitment and can be a very rewarding personal experience, but at the same time, factors like exhaustion, worry, inadequate resources and continuous care demands can be enormously stressful.
As many as 44 million people in America provide unpaid care and support to older adults who are terminally ill or disabled. Regardless of age, gender, race and ethnicity, caregivers report problems attending to their own health and well-being while managing caregiving responsibilities. They often report:
- lack of sleep
- poor diet
- failure to exercise
- failure to stay in bed when ill
- postponement of or failure to make medical appointments for themselves
Remember, when your needs are taken care of, the person you care for will benefit, too. It is crucial that caregivers take steps to take care of themselves. Here are some tips for caregivers to care for themselves while taking care of others.
Move daily and exercise for at least 10 minutes
This may annoy you because you don’t have the time or the energy to exercise every day or it may be next to impossible with all the work, but the truth is that your body needs to move for at least ten minutes every day. Exercising for just 10 minutes a day will improve your physical health, energy levels, and mental health as well. Take a walk, do a bit of yoga, or simply take the stairs instead of the elevator. The more movement you can include into your daily doings, the better the results are for your health and overall well-being.
Some concerned friends, family, and neighbors may think they are helping you by loading your refrigerator with all sorts of high-calorie goodies like cakes and cookies. But stocking up on unhealthy food is anything but helpful for you—or your patient’s—health. Instead, ask friends and well-wishers to bring healthy and nutritious meals that you can freeze and heat up in the future. Eat fresh fruits and vegetables, add good fats into your diet, and stick with lean proteins. Increase your water intake, too. You can also look for other healthy options like fresh food-delivery services or cooked foods from local supermarkets if you don’t have time to cook.
Get sufficient sleep
Sleep is extremely important for the brain and body. While it’s important to get as much sleep as you can overnight, don’t miss out the opportunity of naps during day time. There is no denying the fact that caregiving can be very exhausting and in order to give good care you need to take naps when you can. The daily chores can wait, but if it’s urgent, take a 15 minute power nap, while you are waiting for the dryer to stop. It’s important to take advantage of little recharging moments each day. Remember to keep your bedroom cool, dark and comfortable so that you can get as much sleep as possible. If you have trouble falling asleep, take some chamomile tea at night to help.
Simply going outside and enjoying natural beauty, whether it’s a park or the mountains or a beach, can refresh you enough so that you can stay focused, calm and more centered. And if you are one of those caregivers who have pets around, try spending time with them regularly. Spending time with pets can do wonders for stress management and mental health.
Taking time for themselves is something that caregivers often neglect. Consider taking a break and have another caregiver spend some time with your loved one. Everyone needs to recharge and take time out for themselves. This practice can help you get refreshed and rejuvenated, when you come back as a caregiver again. It’s important to take some time out for small luxuries. It doesn’t have to be big, and it doesn’t have to take more than an hour, but you do need to find ways to enjoy a tiny bit of me time. So go out for a drink or coffee, get a pedicure or haircut and read a book that you left in between, see a romantic-comedy movie or have dinner out with a friend. Find exciting ways for activities that can lift your spirits and take you away from your tight routine.
Remember your aim
Spare a moment to think about your values and why you have chosen to be a caregiver. This will help you stay on track and won’t let you deviate from your aim when the daily routine seems like it’s too much to handle. According to a book by Dr. Julia Mayer, a renowned clinical psychologist, she highlights that ‘often it allows you to think, how you will feel exactly five years from now?’ Down the memory lane, you will probably think that even though caregiving was tough, exhausting and challenging you were glad that you did it. It’s good for caregivers to practice mindfulness exercises at least once a day to try combat stressful feelings.
You are not being self-centered, if you are focusing on your own needs and desires when you are a caregiver. In fact, it’s an important part of the job. You are responsible for your self-care as well as the person you care for. Focus on some of the self-care practices like stress reduction techniques, e.g. meditation, yoga, and prayers, pleasant activities such as swimming, reading a book or taking a warm bath, to perform the job with mental and physical ease.
Alma Causey is a blogger by choice. She loves to discover the world around her. She likes to share her discoveries, experiences and express herself through her blogs.
Find her on Twitter: @Almacausey
A recent interview study has uncovered factors that may contribute to the use of potentially inappropriate medications (PIMs) at the end of life.
Limited awareness may contribute to physicians’ practice of not discussing the discontinuation of PIMs at the end of life. Physicians also mentioned concerns about the reaction of individuals and relatives, although individuals with a limited life expectancy and their relatives might be more willing to discontinue PIMs than their attending physicians believe.
In rare cases in which physicians discuss the discontinuation of PIMs, they tend to focus on the uselessness of their continuation, but emphasizing the positive aspects of stopping PIMs, such as reducing the burden of taking pills, may be a more fruitful approach.
“Although important, reconsideration of the administration of medications in the final stages of life, especially those with a focus on the prevention and treatment of illnesses, happens too little,” said Dr. Eric Geijteman, lead author of the Journal of the American Geriatrics Society article. “Physicians seem to be a bit scared to discontinue drugs in these stages. Patients and their relatives, however, seem to be open to stop inappropriate drugs.”
Read the journal article online [paywall]
Wiley is the international scientific, technical, medical, and scholarly publishing business of John Wiley & Sons, with strengths in every major academic and professional field and partnerships with many of the world’s leading societies. For more information, please visit www.wiley.com.
Having lost a grandfather to Alzheimer’s years ago and witnessing my grandmother’s role as a caregiver become more and more necessary during his progression, I was inspired to write a piece from the viewpoint of a caregiver.
Our hope is that the song can shine a bit of light onto the love, hope, and resiliency of those people who are carers. There is such a commitment and promise that caregivers often make, and often they are the unsung heroes. We wanted to let their voices “SING” a bit, and we hope this song can help to do that, while also raising funds to aid in the fight.
It’s sung by West End actress Gloria Onitiri, and we’ve partnered with The Alzheimer’s Society to release it as a charity single, with all proceeds going to them.
The single is available to download via all major online stores including iTunes, Google Play and Amazon. A JustGiving page has also been set up to collect donations from anyone who enjoys the song and would like to give more to support the important work of Alzheimer’s Society.
Barry Anderson & Mark Petty are a transatlantic songwriting team. Their songbook album You Are Home is available worldwide on iTunes and Amazon and they are currently working on a song-cycle, a musical and writing new holiday material for concerts this Christmas in New York and London. They have recently had concerts of their work at The St. James’s Studio in London and at 54 Below in New York which featured a host of Broadway and West End performers. Barry is also currently performing as Bob Crewe in the US 2nd National Tour of Jersey Boys, and previous credits include Legally Blonde (Aaron Schultz) on Broadway, National Tours of Legally Blonde and My Fair Lady, and T.V. appearances on “30 Rock,” & “As The World Turns”. Mark also writes for mainstream pop, rock and country artists, and collaborates with other composers, most recently the Hungarian composer Sylvester Levay (Elisabeth, Rebecca, Marie Antoinette, Mozart), US composer Bobby Cronin on his original musical comedy The Concrete Jungle, and US composer Michael Patrick Walker (AltarBoyz, Dog & Pony).
Nothing is more comforting than to know your parents are strong, vital, and running their lives on their own, living out their retirement dreams so you can live yours. It’s easy to believe they are okay because that’s what we want to believe. But people beginning to suffer from dementia are good at hiding the truth, especially if they have money to pay for services that would otherwise give them away. How do we know our parents are failing? When do we step in? How far? It is often the steps we take before “Implosion” that make a difference in their quality of life, and our own.
Some things in this life can be undone, and some cannot. The art is learning the difference.
Following is the first chapter of The Goddess of Undo, a mother-daughter story of the conditions of unconditional love.
“911. Is this an emergency?”
Betty waited for her thoughts to start.
“Hello? Is someone there?”
“I’m hungry and Vern is on the floor.”
“What’s your name?”
“Betty. All I have is chocolate cake.”
“Is Vern conscious?”
“His eyes are open. The blood is dry now.”
“Did he fall?”
“Yes…and broke the thing, the darn, the pot.”
“When did he fall?”
“Not. I don’t…”
“Betty, an officer is on the way. Will you stay on the phone with me?”
“The rug is soggy.”
“Is anyone else there with you?”
“Okay. Don’t worry. Someone is on the way.”
Betty let the talk dangle from the yellow box and trailed her fingers along the walls as she made her way from the kitchen to the bedroom, trying to remember when she’d last got out of bed. Was it yesterday, or in another life? Nothing made sense except for the soft zhumm zhumm pumping at her neck that kept her going, though she didn’t know why.
A book lay open on the night stand. Yes. She had been reading her favorite book when the words stopped coming. Betty pressed her palm to a page and closed her eyes.
His voice startled her. She thought he was gone.
“My head hurts,” he moaned.
She should go to his room, but she didn’t want to see.
She pressed her palm on the book again.
The image of a woman’s face surfaced in Betty’s mind. Emma. Emma Harte still lived inside the words that Betty could no longer read. She wiped her eyes with the back of her hand. She couldn’t get the words, but she knew the story. Betty straightened in the chair, lifted her chin, and rested it lightly on the tops of her knuckles, half a smile playing on her lips.
She gazed at the back of a picture frame on the dresser and the door to her memory opened a little wider. She didn’t have to turn the frame around to see Vern as he had been—elegantly tall, wavy hair oiled and combed close to his head, manicured nails, and cuff links of gold and jade showing just below the sleeve of a silk suit they’d bought in Hong Kong. Five suits, one for each day of the week and Sansabelts for the weekend. A fitting match for the executive suite. A fitting match for Compton College’s Glamour Girl.
Then, like a naughty ghost, another image slid over her husband’s face. A younger man in Levi’s and a V-necked T-shirt, toasty brown hair curled haphazard across his forehead. His eyes sparkled blue and full of mischief, a pack of Lucky Strikes rolled up in the sleeve at his shoulder. Shoulders she had once clutched against her own. Frank Sinatra had crooned in the background wherever they went. Jimmy had looked just like him. Evie looked just like Jimmy.
Betty’s face warmed. Thinking of Jimmy still did that to her.
“Tch.” Memories were easy. Images crowded in even when she didn’t want them to. Words were a different matter. The more Betty needed a word, the farther it fled down a winding path she could never seem to follow. Naughty children, ringing the doorbell and running away.
Her stomach rumbled, urging her out of her chair. She shuffled back to the kitchen, to the box, the cold thing, and opened the door, but it was the same as it had been the last time she looked. Nothing there but a few pickle jars and a half eaten round of chocolate cake. “Dammit.”
“Betty? Where are you? Who are you talking to?” Vern’s voice sounded weaker, dried up, like her own. She should go to him, but there was nothing she could do and she didn’t want to see his eyes.
“No one,” she said, annoyed more with herself than with him. She should have done something long ago. She should have told the truth. Asked for help. Something Emma Harte would never do, but Emma was just in a book. Betty was in the real world. Most of the time.
She riffled the refrigerator shelves, found a familiar pink carton, and opened it with wobbly fingers. The fuzzy-junked lid fell, face down, on the floor. “Blahhhh!”
Her stomach growled again, pulling into a knot. She was going to have to tell. She had told. Someone. She ran her fingers through her tangled hair and then saw it hanging against the wall. She pulled the thing up by its twisty cord.
“Hello?” she asked, hearing nothing on the other end. Where did that woman go? Never mind. She pressed the big number one on the touch pad.
The voice that answered should have been her daughter’s, but instead it was that man in the machine. Pressure built inside her chest and pushed out a cough that hurt all the way to her ears. She banged the thing back on its hook.
“Ma’am?” A voice boomed inside the house, then two men in big yellow coats with clumpy shoulders shuffled through the front door. Betty pulled her Christmas sweater over her night gown and stood in her bedroom doorway as they strapped Vern on a cart and took him away.
“Where’s Betty?” she heard him ask as the last man out the door turned to her.
“You’ll be all right here alone? Is there someone you can call?”
Betty lifted a shoulder. There was only the answer man at Evie’s.
“Yessss,” she whispered, ending in a wheeze. She would try again, after Vern was safe.
She went back to the cold box and scooped a piece of dry chocolate cake into her hand, grabbed a fork from a pile in the sink and stuck it in her purse, and followed the men outside, licking sweet brown goo off her fingers.
In the passenger seat of the red Cadillac, she fished lipstick out of her purse, pulled the visor down, and ran smooth color over her lips. She flipped the visor back into place, and waited in the quiet. “What is taking you so long?” she asked out loud, and then realized her mistake.
She got out and went around to the steering wheel side. She hadn’t driven in a long time, and her feet could barely touch the pedals, but the steering wheel felt right in her hands and they knew what to do. At the turn of the key, the engine thrummed up in her ears and the Cadillac took her away, following the big yellow truck.
A woman in a white hat helped Betty sit in a wheelchair and guided her down a hall with shiny floor. “What’s your name, dear?”
She pointed to where the men in yellow coats lifted Vern out of the ambulance. “Betty. That’s my Vern down there.”
Her voice came out like gravel and tar. She had to push hard to make the words, and her chest burned. The woman wheeled her to a high counter. A yellow-coat man wrote on a clipboard, and then set it on the counter with a clatter.
“That’s her, the one I told you about,” he said, nodding his head at Betty. “You drove yourself?”
Betty smiled at him with the side of her face that worked. “The Cadillac did it.”
She straightened and craned her neck to see a man in green pajamas cover Vern with a thin blanket and wheel him down the hall. The back of Vern’s head was crusted brown. He wore nothing but his underwear. Her chest tightened a moment, and then sent her in to a fit of ragged coughing.
“That’s him,” she said again, pointing. Her face burned hot. “I can’t find his pants.”
The woman talked to another pajama man over Betty’s head. “Don’t worry about it. I’ll finish checking her in.” And then to Betty, she said, “We’ll see what we can do. In the meantime, can we call someone for you?”
“Is that your daughter?”
“Do you know her number?”
Betty looked into that place in the corner of her forehead where all the thoughts came from. “One.”
The nurse stared at her. “One?”
After a moment, she patted Betty’s shoulders with both hands then reached for her purse. “Maybe we can find it in here.”
Betty stiffened and held tight to her bag, a loud rumble rolled up from her stomach. “I’m starving to death.”
The woman stepped back. “Okay. We’ll get you something to eat, and then we’ll check you out. You seem a little flushed.” She leaned into the counter, catching the attention of a lady in a pink apron. “Get me a case worker.”
She spoke softly, as if she didn’t want Betty to hear, but she could hear quite well. In fact, she heard things nobody else did. It was the talk she had trouble with. She pushed out of the chair until she could see the woman behind the counter too. “And get me a hamburger sandwich.”
Kat Drennan is a novelist living in Ojai, California, who writes romance and women’s fiction. The Goddess of Undo is available at all major online outlets. To learn more about The Goddess of Undo and other books by Kat Drennan, go to katdrennanbooks.com or visit her author page at Amazon.
MU researcher finds female caretakers experience lower self-esteem, more negative effects to their health and schedules than males
Historically, when a family member is terminally ill, the caregiving responsibility falls disproportionately on women. However, in recent years, more men have assumed caregiving roles, and previous research has found that gender differences in caretaking have decreased. Now, a researcher at the University of Missouri School of Medicine has found women still report more negative caretaking experiences than men. The researcher says that interventions are needed to support female caregivers and teach alternative ways to cope and ask for help in stressful situations.
“As illnesses progress in loved ones, family caregivers become increasingly responsible for hands-on care, such as assisting with bathing and hygiene, as well as cooking, cleaning and managing bills,” said Karla Washington, Ph.D., assistant professor in the Department of Family and Community Medicine and lead author of the study. “This extra load of responsibility can cause serious stress in a caretaker’s life. While more men are assuming caregiving roles, we found significant gender differences in how the caretaking experience is perceived.”
Washington and her colleagues analyzed responses from more than 280 family caregivers. They found that female caregivers reported significantly lower self-esteem, less family support and more negative consequences related to their schedules and health compared to men.
Washington said these findings could be a result of socially constructed gender norms that view women as “natural” caregivers, causing other family members not to feel as obligated to offer them additional help.
“Taking care of sick family members is a responsibility often expected of women,” Washington said. “If society views female caregivers as being naturally better at caregiving, other family members might be less likely to think the caregiver needs support, and thus less likely to offer it.”
In addition, Washington said it is important to consider that gender norms also could cause men to underreport the challenges they face when delivering care, and both men and women could benefit from interventions that offer more support during such stressful times.
Washington’s study, “Gender Differences in Caregiving at End of Life: Implications for Hospice Teams,” recently was published in the Journal of Palliative Medicine. Funding for the study was provided by the National Institute of Nursing Research (R01NR012213). The content of the article is solely the responsibility of the authors and does not necessarily represent the official views of the funding agency. George Demiris, Ph.D., alumni endowed professor in nursing at the University of Washington School of Nursing in Seattle, was co-author of the study and principal investigator of the grant that funded the study.
About the MU School of Medicine
The MU School of Medicine has improved health, education and research in Missouri and beyond for more than 165 years. MU physicians treat patients from every county in the state, and more Missouri physicians received their medical degrees from MU than from any other university. For more information, visit http://medicine.missouri.edu/.
My mother would have turned 78 this week.
Her 73rd birthday was her last here on Earth. She was living with stage four ovarian cancer at the time and I was incredibly sick and couldn’t visit her. The chocolate cake I baked her sat uneaten on my kitchen counter. I didn’t get to celebrate her last birthday with her but I did hold her while she took her last breath a few months later. Cancer took her quickly, but it gave us just enough time to find peace with one another.
I’ve learned a lot about grief in the past several years. I knew about Elisabeth Kübler-Ross’ five stages of grief: Denial, Anger, Bargaining, Depression and Acceptance. What I didn’t pay attention to was that those stages aren’t linear and that I would repeat the steps over and over in various order.
I GRIEVED my mom. I grieved in all caps.
I cried, I got mad, I wondered how I would EVER figure out how to live in a world without my mom. Even though she and I had a fairly tumultuous relationship at times, she was always my mom and I knew she was there for me if I needed her. Then she was gone. The woman that brought me into the world was gone. And there was no ignoring how profound of a loss that was in my life.
Somehow I knew I had to walk through that grief. I couldn’t work it away, or ignore it, or pretend it wasn’t there. I had to walk through every painful step. And so I did. Even though I so often wanted to stop the incredible ache in my heart, I kept walking. Day by day, step by step, one foot in front of the other. And then one day, I noticed that the steps weren’t quite as painful as they had once been. I noticed the ache in my heart was not so pronounced and I realized…I was healing. I did the work. I walked, I talked, I cried, I shared, I felt every little ounce of that grief. And then somewhere along the way, I began to heal.
As I healed, I began to appreciate grief. I was no longer afraid of it.
In a way, I made friends with it. I honored the path I walked which brought me to an extraordinary new world. And I became quite aware that the path never truly ends. It just evolves. There are areas of fire and hot coals, but there are also areas of beautiful green fields with blue skies and blooming flowers in colors I never knew existed. The canvas upon which I live my life today is remarkably different from the one I had for the first 40 years of my life.
Yet, grief is tricky. Just when I think I’ve got it all figured it out, a simple ordinary moment will occur and knock me back a few steps. I find myself aching again, tears rolling down my face, missing my mom. And so…I feel it. I step over the hot coals again, but now I know that I’m capable of walking through that fire. It doesn’t scare me anymore. It’s still hard, but I know what’s on the other side. And I know I’ll find my way there.
Grief never ends. I once thought that was how it worked: You grieved, you got over it, you moved on.
But that is not the case. How could it be? We never forget the ones we love. We carry grief in our hearts for everyone we lose along our life journey. And someday, many will carry their grief for us in their hearts. We can carry that grief and still live. My mom would have wanted me to live. Someday, I want the people I leave behind to live.
So, this week, as the anniversary of my mom’s birth appears on the calendar, likely triggering my friend grief, I will remember the life my mother lived. I will be thankful for the life she gave to me. I will honor all the feelings that arise.
And I will take another step forward on my path.
Kelli Barr-Lyles, MA, is on a mission to open up the conversation about death and grief. She realizes this mission is all uphill, but is under the impression that we are all going to die, so why ignore it? She runs her own counseling business specializing in aging, grief and death as well as pregnancy, birth and postpartum. Additionally, she practices geriatric care management and is currently in training towards certification in death midwifery. She is a secondary caregiver to her father who is living with Parkinson’s disease. Her immediate family, who has to listen to her death talk at length, includes her husband, her three teenage sons and three feline daughters (the cats are the best listeners, for the record).
Her website is currently being revamped so, in the meantime, you can find her on Facebook here.
MU researcher finds only 10 clinical trials conducted in hospices since 1985, says more studies could improve patient care
Randomized controlled trials often are considered the gold standard of research studies that help guide the medical care of patients across the world. However, in hospices, randomized controlled trials are difficult to conduct since patients are so close to the end of their lives, causing a gap in research that could improve the quality of hospice care overall. Now, a University of Missouri School of Medicine researcher has found that only 10 randomized controlled trials have taken place in U.S. hospices since 1985. The researcher said more randomized trials by hospice researchers could lead to improved care for hospice patients.
“Improving care for hospice patients and their families depends, at least in part, on conducting high-quality research in hospice settings,” said Robin Kruse, Ph.D., research professor in the Department of Family and Community Medicine at the MU School of Medicine. “Research is how we make things better. Without research, we either maintain the status quo or implement programs that lack evidence.”
Kruse and her colleagues analyzed all hospice research studies conducted between 1985 and 2015. They found only 10 hospice studies used randomized control trials, and none of the studies directly addressed managing pain, one of the most cited problems for hospice patients.
“Managing pain for hospice patients relies heavily on research conducted on other populations like cancer patients, with the assumption that treatments and results will be the same,” Kruse said. “It’s a common assumption among researchers that results from other pain studies can be applied to hospice patients, but without targeted studies specifically in hospices, no one can know for sure if those are the best practices for that specific group.”
Kruse said there are several strategies researchers can use to conduct more successful studies in hospices, including building strong relationships between hospices and the research team, using research staff who are embedded in hospices and using electronic health records for patient data.
Overall, Kruse believes that if hospice researchers focused more on conducting randomized trials that do not place significant burdens on patients, families or hospice staff, it could lead to improved care for hospice patients. She encourages more researchers to address the gap of evidence-based results in hospice settings so these patients receive the best care possible in the last months or weeks of their lives.
Kruse’s study, “Randomized Clinical Trials in U.S. Hospices: Challenges and the Current State of the Art,” recently was published in Clinical Investigation, a journal focused on the progress and outcomes of clinical trials.
About the MU School of Medicine
The MU School of Medicine has improved health, education and research in Missouri and beyond for more than 165 years. MU physicians treat patients from every county in the state, and more Missouri physicians received their medical degrees from MU than from any other university. For more information, visit http://medicine.missouri.edu/.