Joy Loverde's Blog

What I wish I knew about family caregiving early on is that the 24/7 ongoing responsibilities never let up. We do many things for our elders in the caregiving years.

We rush to the hospital in the middle of the night and we spend countless hours making telephone calls; we cook and clean up and we make sure they take their medications; we listen to them complain and we take them shopping for shoes; we watch television with them for hours and we sit quietly as they doze.

As family caregivers, we do what we have to do with the understanding that we have no way of knowing what’s in store for us and how we’ll cope.  If you are caring for an aging parent or loved one then you know what I am talking about.

What if you could go back in time, and give your younger caregiver-self a bit of advice on the caregiving and eldercare process – what would you say?

I’ve changed from the person I was when I began to manage the care of my parents to the person I am today. Caregiving is fully integrated into my life – personally and professionally — and the lessons I’ve learned along the way (and the ones I’m still learning) are something my younger caregiver-self would surely like to know.

Here is my number one favorite bit of advice: Never underestimate the power of a creative outlet. Feed your joy. Do something you love doing.  Put creative time on your calendar; then show up. 15-minutes is good enough if that’s all the time you’ve got.

What holds you back from doing something creative? If it is the fear that your creative pursuit is not be good enough or you believe that that what you create is useless or ugly – stop judging yourself. You are taking a step most people are too afraid to do. Give yourself the credit and love you deserve.

Start something. Anything. Do what you enjoy. Here are a few creative tasks to consider:

Write – a poem, a short-story, a novel, letter
Cook – a recipe you’ve been saving for special times (like now)
Photography – nature, pets, babies, old people, friends
Day-dream – sit on the porch or in the park and stop thinking too much
Paint – a canvas, one wall in a small room, a piece of furniture
Clean – a closet, a drawer
Dance – remember that nobody is watching
Sing – crank up the volume and belt out your favorite songs

The post Creativity, Eldercare, and Caregiving: Are they related? appeared first on Giving Care by Silvert's.

There is no shortage of posts written on the topic of family caregiving and self-care. You know the drill. Get a good night’s sleep. Eat right. Exercise. Stay social, and so on. These well-meaning messages may fall short of the big picture. If you have ever asked yourself — who will take care of me when I’m old? — then you know what I mean.

One day your family caregiver role will end. In the meantime, you are currently transitioning your personal aging journey whether you realize it or not. Today you are the caregiver; tomorrow, the care receiver. What plans have you made to safeguard your health and happiness in old age?

According to the Journals of Gerontology, “one in three baby boomers falls into the category of separated, divorced, widowed, or never married.” Millennials are also following this trend; a recent Gallup poll indicates that 59 percent of the 73 million millennials are single and have never married. Adding fuel to the fire is the decline in the number of people available to provide in-home care, including family members.

Age, longevity, singledom, loneliness, and isolation is a recipe for disaster.

 

Who Will Take Care of Me When I’m Old?

I have spent a lifetime interacting with thousands of true experts—old people themselves. Using their advice as a blueprint, my new book outlines five critical sections to think about and get in order when planning for old age: personal readiness, housing, relationships (including beloved pets), chronic illness and health, and end of life.

Who Will Take Care of Me When I’m Old?: Plan Now to Safeguard Your Health and Happiness in Old Age by Joy Loverde is a step-by-step guide to living the life you want for as long as possible.

Who Will Take Care of Me When I’m Old? includes:

Real solutions for creating a support network
Checklists and worksheets to foster smarter decision-making
Website links to external resources
Tips on making a home age-friendly
Essential questions to ask the experts
Finding and creating age-friendly livable neighborhoods
Establishing long-term financial stability
LGBTQ networks, support, and resources
Planning for end of life and quality dementia care
The latest products and services to make a smoother aging transition
Books, movies, songs, and TED Talks for insight and inspiration

Planning now for your old age and care, while fulfilling the role of family caregiver today, is a smart strategy and will help bring you greater peace of mind.

The headline of this blog is in all caps for a reason. I’m shouting!

I’m looking forward to the day when bloggers, reporters, website developers, media representatives, and marketing professionals stop referring to the process of caring for parents in terms of “role reversal.” And somewhere along the line, someone thought that the statement, “parenting your parent” was a catchy phrase. Those words also need to go by the wayside.

You fulfill myriad parent-care responsibilities in your family-caregiver role: you assist with doctor visits; you run errands; you make endless phone calls; you help keep the house in order; you make day-to-day financial and care decisions. But nowhere in performing these and other eldercare-related tasks should your actions be interpreted as taking on the role of parenting your parent.

If you disagree with what I am saying, you will learn the hard way that copping a role-reversal attitude can touch off a downward spiral in the communication process between you and your parents, and may possibly lead to a breakdown in the relationship altogether — a serious loss that may not be recoverable when all is said and done.

How do you know if you are operating in this destructive mindset? For starters, listen to your tone of voice. Another clue involves making demands of your parents, rather than asking questions. Giving off a heavy sigh at the beginning of a sentence; standing over them and yelling while they are sitting; crossing your arms; and pointing your finger as you talk are also dead giveaways.

Even if you are granted power of attorney to make decisions in your parents’ behalf, this legal responsibility and automatic authority does not give you the right to behave badly.

Becoming an adult tends to level the playing field, and ideally mutual respect between parents and their grown children happens over time. Even when that is not the case, we are better off avoiding thinking and behaving “parental.”

As our parents age, they will lean on us for help in new and different ways. Our job is to facilitate their abilities and encourage them to take full responsibility for their thoughts and actions, including knowing when to ask for help.

Family caregiving is not easy. Taking on the job also comes the realization that on some level our parent is no longer the parent they were (or we wish they were). Those days are gone forever, and that’s difficult to accept. No matter what, our parents remain our parents to the very end.

The post Family Caregivers: THERE IS NO SUCH THING AS A ROLE REVERSAL appeared first on Giving Care by Silvert's.

The headline of this blog is in all caps for a reason. I’m shouting!

I’m looking forward to the day when bloggers, reporters, website developers, media representatives, and marketing professionals stop referring to the process of caring for parents in terms of “role reversal.” And somewhere along the line, someone thought that the statement, “parenting your parent” was a catchy phrase. Those words also need to go by the wayside.

You fulfill myriad parent-care responsibilities in your family-caregiver role: you assist with doctor visits; you run errands; you make endless phone calls; you help keep the house in order; you make day-to-day financial and care decisions. But nowhere in performing these and other eldercare-related tasks should your actions be interpreted as taking on the role of parenting your parent.

If you disagree with what I am saying, you will learn the hard way that copping a role-reversal attitude can touch off a downward spiral in the communication process between you and your parents, and may possibly lead to a breakdown in the relationship altogether — a serious loss that may not be recoverable when all is said and done.

How do you know if you are operating in this destructive mindset? For starters, listen to your tone of voice. Another clue involves making demands of your parents, rather than asking questions. Giving off a heavy sigh at the beginning of a sentence; standing over them and yelling while they are sitting; crossing your arms; and pointing your finger as you talk are also dead giveaways.

Even if you are granted power of attorney to make decisions in your parents’ behalf, this legal responsibility and automatic authority does not give you the right to behave badly.

Becoming an adult tends to level the playing field, and ideally mutual respect between parents and their grown children happens over time. Even when that is not the case, we are better off avoiding thinking and behaving “parental.”

As our parents age, they will lean on us for help in new and different ways. Our job is to facilitate their abilities and encourage them to take full responsibility for their thoughts and actions, including knowing when to ask for help.

Family caregiving is not easy. Taking on the job also comes the realization that on some level our parent is no longer the parent they were (or we wish they were). Those days are gone forever, and that’s difficult to accept. No matter what, our parents remain our parents to the very end.

Damon Brown’s post, “3 Terrible Reasons Why You Are Addicted to Busyness,” stopped me dead in my tracks. Who me–addicted to “busyness?”

 

He explained why busyness feels like you cannot stop:

Fulfils the ego – busyness becomes an acute measurement of entrepreneurial worth

Fulfills guilt – not taking a break, especially during crucial periods and fearing vacations

Fulfills the silence – to be still feels scary and can result in feeling anxiously bored

 

Things weren’t always this way. As a youngster, I recall sitting on the bank of our backyard creek for hours, swirling the water with a stick and throwing rocks to make ripples. I was comfortable with the peace and quiet. The second time was in my early twenties. As a young mother, I spent hours watching my newborn daughter sleep. No place to go. Nothing to do. I stayed in the moment and enjoyed the miracle of her birth. The dishes and housecleaning could wait.

 

When and how did I evolve into a person who is busy most of her waking hours? I concluded that as personal and professional responsibilities piled up around me, I said “yes” often. Relentless real-life demands pulled me in every direction: A co-worker wants the status report by tomorrow; create and deliver a keynote for a fundraising event; squeeze in a workout; take Mom to the doctor; and cram in just one more load of laundry immediately after declaring I am headed straight to bed.

 

Busyness slowly crept into my life, and settled in like an unwanted house guest.

 

No one is impressed with exhaustion, over-scheduling, and busyness. My long-time friends and loving family members are the ones who helped me understand the destructiveness of busyness. My forthcoming book, Who Will Take Care of Me When I’m Old? further explains how they taught me the value of time. Here is some of their sage advice:

 

When I over-schedule, they tell me:  

“You are running yourself ragged for nothing. You will never get it all done.”

 

When I waste other people’s time, they tell me:

“Soon enough you will alienate them.”

 

When I feed my phone distraction, they tell me:

“You will never get those hours back playing card games and checking email.”

 

When I move through time mindlessly, they tell me:

“Having no set plans means someone else eventually decides for you.”

 

When I resist delegating tasks and responsibilities, they tell me:

“Your way is not always best. You do not have all the answers.”  

 

When I multi-task, they tell me:

“You are not doing any task well.”

 

 

 

Now I know the importance of savoring the present moment; to be unbalanced comes at a hefty price.  From now on, I choose what I do with my time carefully. Life is short.  

Like many people my age, I am experiencing the deaths of close friends and beloved family members at a fast and furious rate. Sometimes the deaths come after a long and painful dying process. Other times – Poof! People die with little to no warning. This month alone, three individuals whom I loved dearly died unexpectedly. I felt like someone punched me in the stomach.

In an attempt to effectively deal with my grief, I went searching for information on the Internet and came upon an organization called The American Hospice Foundation (AHF). For over 20 years, AHF worked to improve access to quality hospice care through public education, professional training, and consumer advocacy. And just like the deaths of my loved ones, I was saddened to learn that AHF has also “died.” They closed their doors June 2014. What a loss!

I learned a lot about hospice from the AHF website. Sadly, if AHF were to shut down their website completely, and make it impossible to troll their content, invaluable information would be lost in cyberspace forever. To help keep AHF’s guidance alive for a little while longer, I offer a brief summary of two new things that I learned about hospice from the AHF website:

 

#1. People have a choice in hospice programs.

When death is imminent, the doctor may recommend hospice. For a long time, we could assume that every hospice recommendation would result in high-quality care. That assumption is no longer a safe bet. Since hospice is likely to be one of the most important health care decisions you make, you must shop around. To start the research process, request a home visit from no less than three providers. Prepare a customized questionnaire ahead of time. How receptive the hospice representative is to the following questions is an indicator of the quality of their program:

What do others say about your organization? (Get references.)

How long has the hospice been in operation?

Is the hospice Medicare-certified?  

What is the expectation regarding the family’s role in caregiving?

Are there services for the patient (and the patient’s family members) that you do NOT provide?

Are your services available 24/7?

How do you define a hospice “emergency?”

In an emergency, what is your average response time?

Are patients ever transferred out of the home and into in-patient hospice care? Under what circumstances are patients transferred?

Is family respite care available? What kind of services are offered? Under what circumstances? Is there a cost involved with these services?

Are your MDs/RNs trained and certified in palliative care?

How are family complaints handled?

How do you measure and track quality hospice care?

What kind of emotional support do you provide, throughout the dying process, and post death?

 

#2. Despite palliative medicine, many individuals continue to suffer at the end of life.

People who are dying — suffering or not — have the right to refuse life-sustaining medical treatments. But what about people, including a large and growing population with advanced dementia, who are not dependent upon life-sustaining medical treatment? How do they exercise this option when there is no life-sustaining medical treatment to refuse?

To accelerate the dying process, people sometimes choose to voluntarily stop oral eating and drinking (VSED) as an exit option. Nevertheless, VSED may be resisted by healthcare practitioners either because they think that it is illegal or because they are uncertain of its legality. To date, there has been little legal analysis of a right to VSED.

If individuals wish to refuse nutrition and hydration just as they may refuse other intrusions on their personal autonomy, it must be discussed ahead of time and can be exercised through an advance directive or a surrogate decision maker.

None of us wants to be at the mercy of a stranger (healthcare practitioner) who holds opposing views to what we or our loved ones would want at the end of life. Do your homework now.

After my father died, my sister and I were responsible for deciding what to do with his belongings and closing out his financial affairs. In addition to the zillions of caregiving hours we racked up before Dad’s death, little did we know that managing the details after his death would be no less time consuming. The process of closing the book on Dad’s life took over three years.  

How to Get Paid for Family Caregiving: Part One describes the many tasks we caregivers perform over the years. One look at that list and, like me, you may be compelled to ask the obvious question – should we family caregivers get paid for taking care of our aging parents? Our parents come to depend on us in every way, shape, and form. Plus, we tend to completely rearrange our lives and livelihoods to help sustain their quality of life.  

Many people believe that we should care for each other out of love, respect, and duty; but do we family caregivers have to go broke in the process? I’m not suggesting hard-fast rules as to how to get paid for caregiving. I’m simply tossing it out there for your consideration.

In the meantime, the following strategies may help to ease your financial load when it comes to family caregiving:

Working caregivers face additional stress when attempting to juggle work and family responsibilities. Find out your employer offers employees paid sick leave benefits to care for loved ones. 
Don’t quit your job just yet. Companies that do not offer paid family leave may offer flexible work schedules or allow you to work from home. Under the Family and Medical Leave Act, eligible workers are entitled to 12 weeks of unpaid leave per year. Go over the options with your supervisor and HR before you make any big decisions. 
Hospitals, social service organizations, and adult education centers offer training programs for caregivers who, upon completion of the program, may qualify to be paid for their services. Contact your local  Area Agency on Aging  and ask about caregiver-training options. 
Certain types of long-term care insurance will pay for in-home assistance, including family caregivers. Much is dependent on the specific policy’s rules. Ask your insurance agent about policies that will compensate family members to provide care after they have completed a caregiving-training program. 
Cash and Counseling Programs allow participants to pay family members (adult children and in some states, spouses) for their services including non-Medicaid programs and veterans’ programs. Most Cash and Counseling programs are based on Medicaid waivers. Be aware that there are waiting lists for these programs. States have also been cutting back because of budgetary pressures. 
Veterans’ pensions help pay for long-term care. Spouses or family members of veterans may get tax-free money for caring for veterans or surviving spouses. The program is called Aid and Attendance or Housebound Pension. 
A life insurance conversion of an existing policy can allow family members to receive payment as caregivers.  Discuss possibilities with the insurance agent. 
If you are caring for parents, and provide for more than half of their basic living expenses, you may be able to claim them as a dependent on your taxes. You may also be able to deduct their medical expenses, even if you can’t claim them as dependents. For more information on the Tax Counseling for the Elderly (TCE) Program, visit the IRS website. 
Disease or condition-specific associations may provide stipends or grants to support caregivers. Each organization has their own requirements to qualify.

A “Help Wanted” ad to find the perfect family caregiver would read something like this:

HELP WANTED

Qualifications:

Skilled negotiator
Demonstrates precise bookkeeping and financial-planning skills
Able to juggle multiple schedules and calendars
Has reliable car and valid driver’s license
Able to do heavy lifting
Offers expertise in home maintenance and repairs
Understands special diets and meal planning
Can whip up a healthy meal at a moment’s notice
Skilled at medication management
Limitless patience
Willing to change plans in mid-stream and go with the flow
Speaks legalese
Creative activity director
Offers spiritual guidance when needed
Willingness to sacrifice personal time and put career plans on hold
Able to withstand criticism from others
Can successfully manage feelings of isolation, loneliness, and guilt
Loves surprises
On call seven days a week, twenty-four hours a day
No days off
No financial compensation
Accepts that the job may last for decades

 

Who would take this job? It turns out that there are plenty of us family members who have already said “yes” to taking on the role of family caregiver. We don’t think twice about doing what it takes to care for elder loved ones. We “just do it.”

Knowing that this is the mindset for most of us family caregivers, there are three underlying purposes as why I have chosen to write this blog series (How to Get Paid for Family Caregiving):

To acknowledge the depth of how much you do in the process of caring for others.
To investigate the possibility of getting paid for family caregiving.
To help avert jeopardizing your long-term financial well-being.

In the coming months, I will be offering information about money and family caregiving; but for now, please review the list above once again – and take it all in. Have you really given yourself credit for all that you do?

Continued on How to Get Paid for Family Caregiving: Part Two

The phone rings. It’s Mom.

“See you later, Joy. I’m going out now to withdraw cash from the ATM machine.”

“Wait! What?”

“You heard me. I need cash and I’m heading out the door.”

The ATM machine in our Chicago neighborhood is located inside the nearby Walgreen’s. It’s a busy city scene – lots of people walking in and out of the store all day long. I pleaded with Mom to stop and think for a moment on how easy of a target she is for someone to rob her once she collects her cash. My then 86-year-old, 100 pound, 4’ 10” mother laughed at me. “Stop worrying. Nothing’s going to happen.”

I took a deep breath and said, “Mom, I’ll be happy to get the cash for you.”

“No, Joy. I like the idea of getting my own money when and how I want, and don’t want to have to rely on you.”

Then the bell went off in my head. I suddenly realized that we were not arguing about her safety; the underlying message here is maintaining control. Once I understood what was really going on inside Mom’s head, I changed my approach.

“Mom, wanting to go to the ATM machine is about your doing as much as possible for yourself. Is that right?”

“Yes, that’s exactly what I want.”

“Well, why stop there? For several years now you have asked me to manage your bookkeeping and banking, and your incoming mail. Why don’t you start writing checks, balancing the checkbook, and managing your accounts? I’ll still be your power of attorney when you need me; but one less thing on my daily to-do list is fine with me.  How does this sound to you?”

“I’ll think about it,” she replied as she hung up the phone. And off she went to the ATM machine.

Thirty minutes later, there’s a knock on my door. It’s Mom, and she has tears in her eyes. I put my arm around her and led her to the living room sofa. She says, “I couldn’t get the machine to work.”

Mom realized that when it comes to withdrawing cash, and banking in general, she is in way over her head. Her highly guarded “independence” came to a screeching halt. She apologized to me for being so stubborn, and said, “Will you please get me some cash?”

I reassured Mom that when she needs cash, we will both walk over to the bank together and she can make the transaction. She liked that idea, and I can sleep better at night knowing that her financial life is safe and secure.

Stay tuned for more interesting adventures of me and Mom.

Are you in the middle of a major conflict with a parent who refuses to move?

 

Part Two of this blog series describes my experiences with conversations that go nowhere, accompanied by that hopeless sinking feeling that something bad will soon happen.

 

As an alternative to moving, hiring in-home helpers and asking family and friends to pitch in are certainly options to be considered. However, in the case of my Aunt, bringing help into her home is not realistic. Plus, I have evidence that she is putting herself and others in danger when she gets behind the wheel of her car. I have seen what goes on with my own eyes and ears.

 

Taking the time to observe what is happening is one of the keys to furthering the conversation about a possible move. Facts lend themselves to a more logical discussion.  Gather evidence before you start any conversation about moving. When you engage your parent in a discussion about this sensitive subject, you will come from a more specific and realistic point of view. Stick to the facts. If it helps you, make a written list of your observations.

 

Also, be aware of your communication style. Do you tend to get bossy and bark demands when you get angry? An effective communication technique I use to calm myself down is to have a glass of water in my hand. I take a sip when I feel like I am about to explode and say something I will regret in the moment.

 

Here are the main reasons why my Aunt needs to move out of her house. Perhaps my list will be helpful to you:

 

Location.  My Aunt lives in the suburbs and must drive several miles to doctor appointments, to the hair dresser, and to church. There is no public transportation. There are no sidewalks. The closest grocery store is two miles away. She gets lost driving in the neighborhood that she has lived in for the past 50 years.

 

Money. Her 1960’s house is falling apart and draining her life savings. The roof needs repair. The basement floods. Also, there’s snow to shovel, lawn to mow, and trees to trim. She pays workers to do this work even though she cannot afford to do so.  

 

Environment. The house is not age-friendly. The laundry room in the basement. Bedrooms and bathrooms are on the second floor. There is no walk-in shower only a bathtub that requires climbing over. She is falling up and down the stairs regularly.

 

Nutrition. My Aunt no longer cooks for herself. She drives to the local fast-food establishments every single day.

 

Isolation. Once a socially active person, she stays home most days and nights. Her neighbors have died and/or left the neighborhood to be closer to their children.

 

Take a look around during your next visit. What are you witnessing? Make a list before initiating any conversations about moving.