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My family faces an impossible choice: caring for our mom, or building our future

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My final year at medical school began this fall with an unexpected flight home to Colorado. My mother has multiple sclerosis, and my sister, her caregiver for the past three years while I attended school in New Haven, was moving away to start a new job she’d suddenly gotten. There was no one else but me. I postponed my hospital rotation and canceled my board exam. I notified the school registrar, saying I was uncertain of when I could return and resume my studies.

Many people assume that having a disability guarantees access to a network of resources. Not so. Because my mother has an income of $36,000 from her divorce settlement, is younger than 65 and lacks a 10-year employment history, she is disqualified from receiving Medicaid (despite its expansion), Medicare and Social Security Disability Insurance. Her private insurance company, like many others, does not cover home care for daily needs. The median cost of this service, for help seven days a week, is more than $80,000 per year. Like many families, we could not afford full-time coverage. This posed a life-altering dilemma: One of us had to stay home to care for her.

With my sister away at college, I went first: At age 16, when our 43-year-old mother lost the ability to walk, my life shifted to sleepless nights and baby monitors. Her disease progressed swiftly; soon she could no longer stand, eat or bathe without assistance. For six years, I provided 10 hours of care every day.

I woke up at 5:30 each morning. After helping my mom with a bed bath, brushing her teeth and lifting her into her wheelchair, I would arrive late to school, breathless and racking my brain for an excuse to tell my English teacher. I accumulated enough pink tardy slips that, despite being a straight-A student, I received a letter threatening my graduation. I dedicated weekends to caring for my mother and missed class to make it to her doctors’ appointments. I quit the cross-country team after finally making varsity. I skipped prom. I turned down the chance to give the graduation speech. I lost my adolescence, and still my mother needed more support than I could give.

Even though I told no one about my home life, it permeated every decision I made. When I received my high SAT score in the mail, I cried tears of disbelief: I soon received a flood of invitations to apply to Ivy League schools and full-ride scholarship offers from out-of-state universities I longed to explore. I declined them all, knowing I had to stay nearby for college. To save money on home health-care costs, my sister and I spent weekends with our mother; that way, we wouldn’t have to hire extra help for the physical tasks that required two people. Midway through my sophomore year, we both moved off campus and back in with her.

I knew that even if I reached out for assistance, few resources were available: Most nursing facilities serve only seniors. And even if we found a facility for younger adults with disabilities like my mother’s, the cost of that care could exceed $10,000 a month. Home care is only slightly more affordable, at $6,000 or $7,000 a month. My mother is on a first-name basis with all the local paramedics — not because of medical crises, but because of the many nights when we needed another set of hands just to help her get out of her wheelchair and go to bed.

Read more at Washingtonpost.com

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Caregiving For A Loved One? How To Get The Help You Need

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This year I joined the ranks of 40 million Americans who are family caregivers as I began to care for my 81-year-old father. As a physician, taking on this role has given me the chance to experience what so many of my patients and their families encounter.

As I’ve learned, no one is prepared to become a caregiver. It just happens.

My dad had been in good health until this past February when he had two disastrous falls, resulting in a subdural hematoma which nearly killed him. Fortunately, a neurosurgeon was able to drain out most of the blood under his skull, beginning a long, slow recovery process.

For several weeks my dad was “complete assist,” meaning he required help for everything: changing position in bed, dressing, eating, and bathing. He couldn’t even stand up, let alone walk.

Fortunately, this stage mostly played out in both the hospital and at an acute rehabilitation facility — so there were many hands on deck in the help department.

But as my father improved, and was transferred to lower levels of care (skilled nursing followed by assisted living), it became clear that family members would have to pick up the slack.

We’ve been fortunate that many of Dad’s friends learned of his condition and have made genuine offers of help. The outpouring has been overwhelming enough that my family and I reflexively went into ‘cocoon mode,’ trying to shield my father from overexertion and fatigue so that he can focus on recovery.

Say yes to help

One thing I’ve learned is that when help is offered, it’s important for caregivers to accept it.

“Make sure you ask for a little bit of help as soon as the crisis hits,” says Katy Butler, journalist and author of the memoir Knocking on Heaven’s Door, about her journey assisting her elderly mother in caregiving for her father. He’d suffered a major stroke at age 79.

“Right after a crisis, friends and family rush in and say, ‘Is there anything I can do?’ And you’re often so overwhelmed you can’t even think — but strike while the iron is hot and take advantage of it.”

Caregiving for a loved one can be so overwhelming that Butler suggests looking for help in “bite-sized pieces.” For example, if someone offers a meal, suggest a specific time and accept that generosity. Further, maybe it could be a recurring offer at the same time each week!

Get help managing help.

In A Beginner’s Guide to the End, authors BJ Miller and Shoshana Berger warn that accepting offers of help can itself be a challenging task. They suggest that you find a friend willing to help you organize your tasks — like regular health care appointments, getting groceries, or house cleaning — and assign them to other willing friends and family.

And don’t forget, one other task you might need a friend for is just to be there for you— to be a listening ear if you’re feeling down. Asking a friend to sometimes call just to check in on you is another way to accept help.

Know what to pay for

You can look for paid help in bite-sized pieces too. Hiring help isn’t an all or nothing proposition.

Butler found that her father benefited from water aerobics. He looked forward to it, and it was an activity that would get him out of the house a couple of times a week. So she made it a priority to get him there. Eventually, she was able to rely on a medical van service to take him to and from the pool–which was a huge relief to both her and her mother.

Bedtime was another piece of her father’s day where Butler and her mother looked for help.

“At night they would both be exhausted…and they would descend into my father’s misery,” she says. “I heard him whimpering and my mother would be shouting at him. It was just too much for both of them.”

Thus Butler decided to outsource bedtime to an aide at $25 an hour. That’s a luxury to be sure, but one that paid dividends in family harmony. Butler notes that it was more affordable because it was only a few hours per day, rather than full-time care.

Look for a program

If your loved one has care needs that exceed your capacity and they can’t left alone all day, an excellent and affordable option might be a PACE program: Program for All-Inclusive Care for the Elderly. These are government-funded community programs that provide transportation, daily activities, nutrition, medication and therapy all under one roof.

But PACE programs only operate in 31 states, so make sure to find out if there’s one in your area.

Even if there isn’t a PACE program nearby, talk with your loved one’s health care team (probably a social worker or case manager) about subsidized programs for the elderly or care-dependent in your area. Many are grant-supported. You could also look for a geriatric care manager who can help coordinate and organize care and other support services.

Schedule your own health care

Caregiver stress is a well-known phenomenon and good one to avoid; it can lead to higher rates of anxiety and depression, and fuel a sense of burnout.

To minimize the likelihood of caregiver stress, be sure to take care of your own needs: See your own doctor or therapist, be mindful of your hobbies, be it yoga class or working out. Maintaining activities you enjoy and having me time allows for reflection and recharging.

The main takeaway is do your homework: Find out what resources exist, what you and your loved one can afford, and take as much help as you can get.

And even though caregiving is serious business, don’t forget to savor the moments of joy that do come your way. When caring for her father with advanced dementia, Debbie Mefferd looked forward to the moment each day when he’d ask her if “the drinking light was lit.”

She’d pour him his daily sweet and dry vermouth with a twist of lemon on the rocks and together they’d sit on the porch, enjoying the breeze. “It resembled a conversation and a little bit of normal life. And I thought it was a very good thing,” she told me.

Savor those small moments. You and your loved one will be happier for it.

John Henning Schumann is an internal medicine doctor and serves as president of the University of Oklahoma’s Tulsa campus. He also hosts Studio Tulsa: Medical Monday on KWGS Public Radio Tulsa. You can follow him on Twitter: @GlassHospital.

Article from npr.org

BOB WOODRUFF

The Reality of Suddenly Becoming a Caregiver

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One phone call turned my world upside down.

It was Jan. 29, 2006, and the then-president of ABC News was on the phone, explaining that my journalist husband, Bob Woodruff, had been hit by a roadside bomb in Iraq where he was covering the war for ABC’s World News Tonight. Bob had suffered a severe traumatic brain injury (TBI) and was being rushed into battlefield surgery, where doctors would remove half of his skull to save his life. It was unclear whether he would make it through the procedure.

When the phone rang, I was in Disney World with our four young children. Like many, I was baptized by fire into the world of caregiving. I had no warning, no training and no previous experience. I was terrified.

For the next 35 days, Bob lay in a medically induced coma at the Bethesda Naval Hospital in Bethesda, Md. [now called the Walter Reed National Military Medical Center]. As his body physically healed, his mind refused to wake up. My initial hopeful spirit had finally given way to heartbreaking reality. I forced myself to tour an acute care nursing home because doctors had gently been telling me this was Bob’s next step — unless he could wake up and begin the grueling process of rehabilitation.

The next day, just like a made-for-TV movie script, Bob woke up on his own, elated, speaking gibberish and gradually becoming aware of the extent of his injuries. Now the real hard work would begin: the long, slow slog of recovery after brain injury and the roller-coaster ride of the caregiver.

The medical staff and others had prepared me to deal with Bob’s depression and sadness, the common reaction to patients coming to grips with loss in the wake of traumatic and life-changing events or diagnoses. In addition to my own broken heart, I wondered if I’d be able to carry the weight of my husband’s sorrow and preserve the emotional well-being of my children. Could I parent them through the shoals of family trauma without permanently staining their worldview?

Worried about such an uncertain future, I decided to ask Bob directly if he was feeling depressed. Three days after he had emerged from the coma, I took his hand and bent down near his face in the hospital bed, trying not to look at the sunken place on his skull where the bone flap was gone.

“Honey, do you feel cheated?” I asked gingerly. “It would be normal if you did. You just took over the anchor chair from Peter Jennings, and you’ve barely had time to enjoy the new role. Are you asking yourself, ‘Why me?’ “

Bob’s answer set the tone for how I would move forward, for the lens through which I would try to view the immediate future and everything that would come after.

“Why not me?” he answered, with no trace of bitterness. “I’m no different than the 25-year-old soldier from Kansas. Just because I’m on TV doesn’t make me more special than anyone else.”
I was stunned — in a good way. Bob’s response and his ability to try to look at everything from a place of positivity was what allowed me to pick myself up that day and vow to do the best I could as a caregiver.

Anyone who has been through “the bad thing” knows that not every day can be viewed with Doris Day-like optimism. There were good stretches and then periods of what I called “payback” — two steps forward and sometimes three back. There were moments of grief and also secretive soul-crushing sob fests, and there was disappointment, regret and anger. That would be the stuff of real life.

This is my first column as a regular contributor to AARP, where I will be sharing my caregiving experiences and those of others. I am humbled by the stories of people who care for loved ones and friends through many different aspects of hardship and adversity. They are the true heroes to me, especially the thousands of military families who endure injury, illness and loss in service to their country.

I certainly don’t pretend to have all the answers. And our family’s story is just one of millions out there, each one important to remind us how we all get through — by combining our strengths, doling out helpful advice and feeling connected to a larger caring community.

And while we all can’t adopt the “Why not me?” attitude every single day, my attempts to hold that thought on the bad days was a kind of armor, a mental talisman when I felt myself slipping under. It’s those moments of grace that can pull us through when we feel simultaneously overwhelmed and grateful as caregivers.

Lee Woodruff is a caregiver, speaker and the author of three books, including the best-seller, In an Instant. She and her husband, Bob, are cofounders of the Bob Woodruff Foundation, which assists injured service members and their families. Follow her on Twitter @LeeMWoodruff and Instagram @leewoodruff.

Original article from AARP.org

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On the Job, 24 Hours a Day, 27 Days a Month

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STAMFORD, Conn. — Tuesday night was rough. A sharp scent drifted into Marjorie Salmon’s dream world at 4 a.m. She was still trying to rouse herself when its source, her 77-year-old client, pounded on her bedroom door, yelling that he wanted to go home.

“You’re home, Bob. This is your home,” Marjorie told him. She calmed him down, cleaned him off, showered him, dressed him and put him back to bed, but could not get herself back to sleep.

Now it was deep into a dreary Wednesday morning. Marjorie set out a bowl of Cheerios, a plate of strawberry and apricot slices in a star pattern, milk, juice and a plastic shot glass with six pills in it — blue, white, brown.

“Where are you, Bob?” she called. “Come in and have breakfast, finish your food, your cereal, then you have your medications.”

This was in late May, but it could have been pretty much any time this year. Since mid-January, Marjorie has been Bob Dettmer’sround-the-clock caretaker. Bob is fogged in by Alzheimer’s and unsteady from Parkinson’s. Marjorie’s job is called home health aide, but the term does not begin to encompass her duties. She is social worker, housekeeper, behavioral-modification expert, dietitian, diaper changer, day planner, de facto case manager, warden and more.

Marjorie agreed to do the job for a flat rate of $160 per day plus room and board. Her workday starts when Bob wakes up, or before, and finishes after he goes to sleep, and can stretch for 14 or 16 hours or more. She works 26 or 27 days out of the month. The pay is not much — at 16 hours a day, it would come to $10 an hour — but Bob’s family is deeply grateful, and that counts for a lot.

“If I take a client and I have the respect,” she said, “I will stay through to the end.”

Home health care is the fastest growing major job category in the country, one of the most emotionally and personally demanding, and one of the worst paid.

Elder-boomers living longer and seeking to “age in place” rather than in institutions have created a demographic explosion that even a 150 percent increase in home care workers in the last decade, to nearly 2.3 million, cannot keep pace with. Nationwide, hundreds of thousands of ailing people entitled to Medicaid-funded home care are on waiting lists.

But home care workers’ labor happens behind closed doors. The workers are mostly women of color, and about one-third are immigrants. As a result, many advocates say, their work is systemically devalued, dismissed as “domestic care” and reimbursed at rock-bottom rates by state Medicaid programs.

It is a vicious circle. Because these have always been poor-paying jobs, they are seen as lousy, low-skill jobs. And because they are seen as lousy, low-skill jobs, they pay poorly.

“Rather than calling them low-wage workers, I would call these workers professionals who are paid low wages,” said Robyn Stone, senior vice president for research at LeadingAge, an association of nonprofit aging-services providers.

“They are taking care of people with very complex needs, people who have multiple chronic conditions, who may have all kinds of varied living environments. A lot of the families are really dysfunctional and the aides have to deal with that, too. And they’re getting paid chump change, and it’s a travesty.”

Nationwide, home care workers — a category that includes home health aides as well as home care aides and personal care aides, who have less specialized training — average $11.52 an hour, and 45 percent of them who work full time are on public assistance, according to P.H.I., a research and consulting group focused on direct care workers.

In the New York region, inflation-adjusted wages for home health aides actually fell from 2007 to 2017. In New York, one of the most expensive cities in the country, the 91,000 full-time home care aides earned an average of $27,000 in 2017, according to the city Department of Consumer and Worker Protection.

The turnover rate, not surprisingly, is astronomical. As many as two-thirds of home care workers leave their jobs, their field or the work force every year, and more than 4.2 million jobs will have to be filled from 2016 to 2026, P.H.I. says.

Twenty-four-hour care is particularly grueling and isolating: long bouts of idleness, punctuated by spasms of disorder and intimate struggle. Home care workers are typically offered little support or counseling on how to deal with the stress or process the grief.

“All they tell you is, ‘Don’t get attached to the client,’” Marjorie said. “But how do you prevent that? If you have a heart, how can you not get attached?”

In some ways, taking care of an Alzheimer’s patient is like parenting a 170-pound toddler. In some ways, it is like being married to one.

Yet many aides who stick with the job consider it a calling.

“This job, it is total, it is total demand,” Marjorie said one day. “Sometimes they don’t pay you what they should, but you know what, I don’t know what the end of my time is going to be like. I believe that what goes around comes around, and I believe in distributing love equally and fairly.”

Read More at nytimes.com

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Home Safety and Alzheimer’s Disease

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Over time, people with Alzheimer’s disease become less able to manage around the house. For example, they may forget to turn off the oven or the water, how to use the phone during an emergency, which things around the house are dangerous, and where things are in their own home.

As a caregiver, you can do many things to make the person’s home a safer place. Think prevention—help avoid accidents by controlling possible problems.

While some Alzheimer’s behaviors can be managed medically, many, such as wandering and agitation, cannot. It is more effective to change the person’s surroundings—for example, to remove dangerous items—than to try to change behaviors. Changing the home environment can give the person more freedom to move around independently and safely.

Create an Alzheimer’s-Safe Home

Add the following items to the person’s home if they are not already in place:

  • Smoke and carbon monoxide detectors in or near the kitchen and in all bedrooms
  • Emergency phone numbers (ambulance, poison control, doctors, hospital, etc.) and the person’s address near all phones
  • Safety knobs and an automatic shut-off switch on the stove
  • Childproof plugs for unused electrical outlets and childproof latches on cabinet doors

You can buy home safety products at stores carrying hardware, electronics, medical supplies, and children’s items.

Lock up or remove these potentially dangerous items from the home:

  • Prescription and over-the-counter medicines
  • Alcohol
  • Cleaning and household products, such as paint thinner and matches
  • Poisonous plants—contact the National Poison Control Center at 1-800-222-1222 or www.poison.org to find out which houseplants are poisonous
  • Guns and other weapons, scissors, knives, power tools, and machinery
  • Gasoline cans and other dangerous items in the garage

Moving Around the House

Try these tips to prevent falls and injuries:

  • Simplify the home. Too much furniture can make it hard to move around freely.
  • Get rid of clutter, such as piles of newspapers and magazines.
  • Have a sturdy handrail on stairways.
  • Put carpet on stairs, or mark the edges of steps with brightly colored tape so the person can see them more easily.
  • Put a gate across the stairs if the person has balance problems.
  • Remove small throw rugs. Use rugs with nonskid backing instead.
  • Make sure cords to electrical outlets are out of the way or tacked to baseboards.
  • Clean up spills right away.

Make sure the person with Alzheimer’s has good floor traction for walking. To make floors less slippery, leave floors unpolished or install nonskid strips. Shoes and slippers with good traction also help the person move around safely.

Minimize Danger

People with Alzheimer’s disease may not see, smell, touch, hear, and/or taste things as they used to. You can do things around the house to make life safer and easier for the person.

Seeing

Although there may be nothing physically wrong with their eyes, people with Alzheimer’s may no longer be able to interpret accurately what they see. Their sense of perception and depth may be altered, too. These changes can cause safety concerns.

  • Make floors and walls different colors. This creates contrast and makes it easier for the person to see.
  • Remove curtains and rugs with busy patterns that may confuse the person.
  • Mark the edges of steps with brightly colored tape so people can see the steps as they go up or down stairs.
  • Use brightly colored signs or simple pictures to label the bathroom, bedroom, and kitchen.
  • Be careful about small pets. The person with Alzheimer’s may not see the pet and trip over it.
  • Limit the size and number of mirrors in your home, and think about where to put them. Mirror images may confuse the person with Alzheimer’s disease.
  • Use dishes and placemats in contrasting colors for easier identification.

Touching

People with Alzheimer’s may experience loss of sensation or may no longer be able to interpret feelings of heat, cold, or discomfort.

  • Reset your water heater to 120°F to prevent burns.
  • Label hot-water faucets red and cold-water faucets blue or write the words “hot” and “cold” near them.
  • Put signs near the oven, toaster, iron, and other things that get hot. The sign could say, “Stop!” or “Don’t Touch—Very Hot!” Be sure the sign is not so close that it could catch on fire. The person with Alzheimer’s should not use appliances without supervision. Unplug appliances when not in use.
  • Pad any sharp corners on your furniture, or replace or remove furniture with sharp corners.
  • Test the water to make sure it is a comfortable temperature before the person gets into the bath or shower.

Smelling

A loss of or decrease in smell is common in people with Alzheimer’s disease.

  • Use good smoke detectors. People with Alzheimer’s may not be able to smell smoke.
  • Check foods in your refrigerator often. Throw out any that have gone bad.

Tasting

People with Alzheimer’s may not taste as well as before. They also may place dangerous or inappropriate things in their mouths.

  • Keep foods like salt, sugar, and spices away from the person if you see him or her using too much.
  • Put away or lock up things like toothpaste, lotions, shampoos, rubbing alcohol, soap, perfume, or laundry detergent pods. They may look and smell like food to a person with Alzheimer’s disease.
  • Keep the poison control number (1-800-222-1222) by the phone.
  • Learn what to do if the person chokes on something. Check with your local hospital or Red Cross chapter about health or safety classes.

Hearing

People with Alzheimer’s disease may have normal hearing, but they may lose their ability to interpret what they hear accurately. This loss may result in confusion or overstimulation.

  • Don’t play the TV, radio, or music too loudly, and don’t play them at the same time. Loud music or too many different sounds may be too much for the person with Alzheimer’s to handle.
  • Limit the number of people who visit at any one time. If there is a party, settle the person with Alzheimer’s in an area with fewer people.
  • Shut the windows if it’s very noisy outside.
  • If the person wears a hearing aid, check the batteries and settings often.

It may not be necessary to make all these changes; however, you may want to re-evaluate the safety of the person’s home as behavior and abilities change. For more on home safety and Alzheimer’s, read Home Safety Checklist for Alzheimer’s Disease.

Is It Safe to Leave the Person with Alzheimer’s Alone?

This issue needs careful evaluation and is certainly a safety concern. The following points may help you decide.

Does the person with Alzheimer’s:

  • Become confused or unpredictable under stress?
  • Recognize a dangerous situation, for example, fire?
  • Know how to use the telephone in an emergency?
  • Know how to get help?
  • Stay content within the home?
  • Wander and become disoriented?
  • Show signs of agitation, depression, or withdrawal when left alone for any period of time?
  • Attempt to pursue former interests or hobbies that might now warrant supervision, such as cooking, appliance repair, or woodworking?

You may want to seek input and advice from a healthcare professional to assist you in these considerations. As Alzheimer’s disease progresses, these questions will need ongoing evaluation.

For more home safety tips, visit the Home Safety Checklist for Alzheimer’s Disease.

Read about this topic in Spanish. Lea sobre este tema en español.

For More Information About Home Safety and Alzheimer’s

NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center
1-800-438-4380 (toll-free)
adear@nia.nih.gov
www.nia.nih.gov/alzheimers
The National Institute on Aging’s ADEAR Center offers information and free print publications about Alzheimer’s disease and related dementias for families, caregivers, and health professionals. ADEAR Center staff answer telephone, email, and written requests and make referrals to local and national resources.

Family Caregiver Alliance
1-800-445-8106 (toll-free)
info@caregiver.org
www.caregiver.org

Eldercare Locator
1-800-677-1116 (toll-free)
eldercarelocator@n4a.org
https://eldercare.acl.gov

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Navigating the Transition into Caregiving

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Personal transformation is usually an experience we actively seek out – not one that hunts us down. But in the twenty-first century, becoming a caregiver is a transformation that comes at us because today the ‘call to care’ is at odds with the imperative of work and the call to individual achievement. Being a caregiver is not something most people think or dream about, let alone prepare for, even though it’s a role many of us will inhabit, since there are approximately 43 million informal caregivers in the United States and 6.5 million caregivers in the United Kingdom.

When a loved one becomes a caregiver everything changes, including responsibilities, beliefs, hopes, expectations and relationships. Caregiving is always different than we imagine it to be, largely because so few of us think through our care roles in advance. The disorientation associated with these roles can be deep, intense, and isolating because it entails a series of paradoxes, including an ongoing tension that becomes difficult to reconcile: this is a relationship you may not want but feel you must accept.

In the resulting process of transformation, your loved one’s story, your story, your relationship story, and the ‘cure’ story you have mapped out in your head can betray you when what happens isn’t what you thought would happen – or should. It’s as if someone steals the script you have been working from your whole life through.

Unlike the taken-for-granted script that leads you to believe that willpower and love and desire can change almost any situation, your caregiving exists in the overlooked spaces of life where the language of doing and action are confronted by the ongoing realities of care, realities that require you to change the way you think and talk about your experiences.

Our interviews with caregivers across the care spectrum reveal an unexpected change in how they perceive support from those who once – pre-caregiving – provided comfort and reassurance. Suddenly there is a growing awareness that you feel alone. Troubling questions emerge such as, Why is it that the more time, energy, and attention I provide to my loved one in need, the less comfortable I feel interacting with family and close friends? And why do I feel so frustrated and out of place in the company of people I used to enjoy?

Although the friends and relations who surround you may be familiar, something is different. They are still recognizable, but the ways in which you interpret what they are saying (or not saying) may no longer make sense. If a caregiver could write a truthful letter to family and friends explaining this experience of disorientation, it might read like this:

I see when you’ve called, but I don’t have the energy to even listen to a voicemail message. It’s not that I don’t want to. It’s just that I feel like I can’t right now. I’m here, but I may not even answer the door if you come by. It’s not that I don’t want to. You want to help and for that, I am deeply grateful, but caring so deeply for someone I deeply love is changing me in ways I don’t know how to explain. I want to be called. I want you to text. I want you to want to come by, even though when you do I may not answer.

You may hear me and think I sound the same, but I don’t. I didn’t choose this way of looking at things; it feels like it chose me. You may hear me and think I sound the same, but I don’t because I’m not.

When the people you most want to understand your care roles can’t or don’t, it can feel like a betrayal. When the loved one you are caring for can no longer be an audience for you in the ways they once were (as a spouse, parent or child), you can feel trapped by a desire to share, but painfully reminded that you can’t or don’t know how to disclose what you most want them to know and understand.

Relationship confusion is what can happen when care roles ask caregivers to act in ways they feel are inconsistent with preexisting relationships. Talking to a friend the way you once did – filled with references about future vacations and plans – may no longer be possible in ways that make you or your friend comfortable.

Simply bathing a spouse you are caring for can change how you think about your relationship. This act of care can become charged with meaning that threatens relational identity. No longer is physical intimacy and touch designed to enhance your relationship. Rather, the caregiver role changes the meaning of physical intimacy, from enhancing closeness to fulfilling a need. Over time, this can create confusion and resistance because it unsettles the way you once viewed your relationship as a spouse or partner.

In these moments you can feel desperately lost in a relationship you’ve been in for years. No one gives you permission to make sense of your experiences. After doctors, nurses, physical therapists, family and loved ones drive away, hang up the phone, close the office door or send an email or a text, you are still living deeply inside the situation. Other people won’t find value in your experiences in ways that make sense to you. They don’t have to – yet – but you must, and now.

Only by reaching beyond your existing networks into relationships with other caregivers will you be able to try out new stories that make it possible for you to see your experiences from different perspectives. Multiple vantage points can grant you the freedom and permission to be self-compassionate in ways that only others in similar circumstances and relationships can promote and sustain.

Reaching out and connecting with people who share common caregiving challenges is vital to the process of shaping personal growth and voicing experiences that allow you to explore meanings that may make no sense to your existing networks, but which are necessary to your evolving caregiver identity – meanings that move beyond good or bad, sadness or happiness, cure or recovery.

The changes that accompany the shift from loved one to caregiver can also invite new ways of understanding yourself and your evolving purpose. The care roles in which you find yourself require a reclaiming of a mindset that allows you to think about yourself and your experiences in sustainable and authentic ways.

Although others may use values like ‘perfection’ and ‘outcomes’ to guide them, these things make no sense in terms of caring. Instead, caregivers must lean on values that are consistent with their experiences. Connection and mindfulness, not perfection and outcomes, are more appropriate markers because they emphasize the value of the care role and how this role may change how you think about yourself.

In the 21st century, caregiving isn’t simply a set of obligations. Rather, it’s a radical re-envisioning of the self-in-action. Care can’t be accomplished in isolation, but only with and through others. Caring for each other occurs within nested dependencies. The outer nest is society, while the innermost is an individual with health needs, or oneself. Giving and receiving flows back and forth between individuals and groups within these layered ‘nests’ of family, community and society. Caring itself is the foundation of our individual and collective wellbeing, but it cannot thrive without support.

Often however, support is hard to come by because caring is mistakenly conceived as a private set of activities. Instead, caregiving is an integrative way of being with others that leaves no room for specialization or prefabricated boundaries. It requires fluency in participation, negotiation and innovation with others who are both similar and different, close byand far away, face-to-face and online, intersecting the formal and informal spaces of our lives that cannot be quarantined from one another, whether at home or at work, in the community or in the world of hospitals, care homes and hospice.

Caregiving requires a laser-like focus on the needs of another person. But the aspect of caregiving that others too often forget, but carers know intimately, is that care also requires a radical opening-up to others, a willingness to connect with those you know are in the midst of struggle too. This awareness, born from personal transformation, can be the beginning of a new way of seeing and being ourselves, entwined with the lives of those we love.

Donna Thomson and Zachary White’s new book is The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver.

This article originally appeared in the Transformation section of OpenDemocracy. It is republished here with permission. Donna Thomson is the author of “The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving”and blogs at The Caregivers’ Living Room. Dr. Zachary White is an Associate Professor of Communication at Queens University of Charlotte and blogs at “The Unprepared Caregiver.”

surviving-caregiving

Surviving Caregiving with Dignity, Love and Kindness

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Yesterday, my husband Les died. No, it was actually a year and 41 days ago, but it feels like yesterday. I’m still wondering how this could really have happened. He was diagnosed with Early Stage Early Onset Probable Alzheimer’s Disease in January 2000 at age 63.

For the first week after diagnosis, I kept saying, “WE have Alzheimer’s,” but then I quit saying that even though it was certainly true. When a person is diagnosed with dementia, there must be someone who is the caregiver. That someone may be hired, but in most cases it is a member of the family.

In many cases, that is the spouse of the person with dementia. Whether that new caregiver knows anything about the condition, she or he is thrust into a role for which they may have no preparation at all.

This article is about how I learned to become a caregiver and what I found to be the 10 most useful things to know in caregiving—not only for myself, but also for Les.

1. Love: Sometimes we don’t have strong feelings of love—when we are tired, scared or angry about the situation. I have heard and read about situations where there is a great deal of anger simmering in a relationship that may make it extremely difficult to be a caregiver. “Brotherly” love may help to get through those difficult times. Inspirational readings can be calming and encouraging. It may be useful also to talk with a clergyperson or a therapist.

2. Learning: Learn as much as possible about the particular kind of dementia your loved one has. There are many books about the subject now as well as articles on the Internet. Ask the doctor for recommendations about ideas for reading. If he or she doesn’t have any, then try the library or Google.

3. Support groups: I cannot say enough about the value of support groups. I learned as much from other caregivers about how to handle situations as I did from anywhere or anyone else. Fellow caregivers can be an absolute goldmine—not only for ideas, but for venting when things are tough. It takes a fellow caregiver to fully understand what you are going through.

4. Humor: This is one of the best ways to get through those sticky situations where you are getting resistance or disagreement. Your own “private” jokes with your loved one may be great for maintaining a bond between you.

5. Diversion: Another way to get through a difficult time is diversion. When humor doesn’t work, coming up with an alternative activity or topic of conversation usually does. It may be something as simple as looking for a favorite object; i.e., “Now where did the coin box go?” or possibly offering a drink of water or a “treat” that is appropriate to the person’s diet.

6. Exercise: This may sound like a nearly impossible thing to do if you are a 24/7 caregiver, but it is not. It is really on a par with being in a support group. Physical exercise is very important for anyone with dementia and their caregivers because it helps with depression, stress and overall health. There are several ways to do this. One possibility is to take your loved one with you as long as she or he can walk. Another option is to leave him/her doing some activity for the duration of your walk or other exercise. Finally, ask a family member, friend or agency person to stay while you exercise.

7. Planning: Time to plan ahead may vary with the extent to which the dementia has progressed when the diagnosis is given. Contact an Elder Care Attorney and have him or her help prepare all the Advance Directives one needs. This includes Power of Attorney, Living Will, Healthcare Power of Attorney and a regular Will. You may also want a Do Not Resuscitate (DNR) Form.

8. Meaningful Activities: While this may seem like an improbable recommendation for a person with dementia, it was definitely my experience that non-pharmacological activities were a key to a slower progression of the disease in my husband and others with dementia. Just as we are given suggestions for activities to “prevent” dementia, I strongly believe that activities can keep those already diagnosed from going downhill faster. It does not have to be huge. For Les, one year it was helping to propagate poinsettias over a year for the Christmas show at a Chicago conservatory and then taking people there to see them all. Other years, it was going to various nearby attractions with a caregiver willing to take him places to keep him seeing new things and active.

9. Dignity: As long as possible, it is important to treat those with dementia with as much dignity as possible. This occurs not only through participation in meaningful activities, but also when going to visit the doctor. One of my husband’s most important messages to doctors and other groups he addressed was that patients do not want to be ignored or separated from the caregiver during discussion. If there were things I wanted the doctor to know that I didn’t want to say in front of Les, I wrote them down and handed them to the nurse before we went in so the doctor could read them. It is not always easy to work around the patient as their abilities diminish, but it is vital to allow them to maintain their dignity, and especially not to treat them as a child. They have a lifetime of experience even if they have lost some skills, so they must be allowed personal freedom balanced with the degree of risk.

10. Respite: This is last, but not least. Even though Les had long-term care insurance so we could have paid caregivers to come in a few hours a day, I did have a stroke after 10 years of being a caregiver. It was only then that my sons suggested we put Les into a nursing home. If you have long-term care insurance, it’s good to use it while your loved one is still home so you can get much needed breaks. If you don’t have that insurance, hopefully family and/or friends will offer to help. If they don’t offer, ask. It you still need help, try your church or social service agencies in your municipality or township.

I have very fond memories of Les even after he was diagnosed with Alzheimer’s. I will never forget that he was still Les until the day he died; he was always “there” after 11 years. Being there for those moments was a blessing for me and our whole family. Dementia is a disease, but it doesn’t have to be a disaster.

This article was first published several years ago.

by Barbara Hanson Dennis
June 6, 2018