Caregiving

Caregiving and Technology: Can You Say “Cutting Edge?”

Technology allows caregivers peace of mindLots in the press lately about how technology is helping seniors grow old at home and feel safer, more socially connected and stimulated—and giving their boomer children peace of mind. I’ve written my share of stories on the subject, including one recently for AARP they provocatively titled “Is This the End of the Nursing Home?” about the cool technologies that allow people to grow old at home.

I wrote another on tech tools for caregiving after speaking and moderating a panel on boomer and senior housing—fun with Cathy Smith on the panel from Google talking about trends the company is seeing– at the What’s Next Boomer Business Summit in San Diego. Entrepreneurs, venture capitalists, national experts, and companies with products and services in the aging field met to learn about the latest technology, network and cross-pollinate. It was fascinating!

If you want to keep current (a good idea!), the best resource I know is industry analyst Laurie Orlov’s website Aging in Place Technology Watch.

And talking great resources, check out the newly released Not Your Mother’s Retirement. It covers work, travel, exercise, spirituality, and caregiving. But I save the best for last. I wrote the chapter on housing. 

 

 Google Images via newsbuzzz.com

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Actors Fake Dementia to Help Family Caregivers

A hospital program teaching family caregivers to be more effective with help of actors faking dementia

Actor pretends to have dementia

Presenting a caregiving program out of New Hampshire’s Dartmouth-Hitchock Medical Center: trained actors pretend to have Alzheimer’s, other dementias, or Parkinson’s in order to teach family caregivers strategies do a better job. Here’s how it works: caregivers are given a scenario to act out–perhaps coaxing Mom to take her medication, get dressed or change clothes. The actor is Mom and you are a frustrated and running-out-of-ideas adult daughter, perhaps. Or, you perform brilliantly.

Either way, the actors and fellow caregivers critique your “scene” and make suggestions so that when that situation really occurs, you have more effective strategies.

Here’s the piece from my weekly AARP blog

Training medical students to do a better job by using actors to play patients is not new. But at the Dartmouth-Hitchcock Medical Center, actors are faking dementia and Parkinson’s  disease to help family caregivers be more effective — and that’s downright novel.

Last month, 16 caregiver spouses gathered at the hospital’s simulation center to boost their communication skills with a loved one. These husbands and wives were dealing with challenging behaviors and wanted help solving real-life issues. In the process, the group also learned what it’s like to be the one impaired.

Each participant was videotaped in a pretend scenario with an actor (made up to look the part) who refused to get dressed, say, or was exceptionally negative. After the role-playing, the actors and fellow caregivers offered feedback on the caregiver’s body language and interaction — what worked and what didn’t. “Family caregivers are often thrust into this role of providing medical care without medical training,” says Justin Montgomery, a clinical nurse and nurse practitioner at Dartmouth-Hitchcock’s Aging Resource Center.

One caregiver in the two-session program was Myra Ferguson, whose husband has Parkinson’s. While she has had experience with the disease — her father also had it — caregiver boot camp reinforced her skills.

Ferguson was asked to play the sister of a patient/actor with Parkinson’s who didn’t want to put on a sweater or take her medicine. “My job was to encourage my ‘sister’ and tell her she could do it,” says Ferguson.  The feedback was positive — and useful. “I saw that I could be gentle and patient,” Ferguson says. “My colleagues liked that I used humor and made jokes to turn things around.”

Dartmouth-Hitchcock plans another round of caregiving sessions this spring and hopes to have more in the future. The training program is part of a federal grant through the Health Resources and Services Administration. “I was feeling really alone and lost before the boot camp, but it was like a support group for me,” says Ferguson. “It was also wonderful that I was learning to be a better caregiver.”

Photo by Charlotte Albright/Vermont Public Radio

Would this kind of program appeal to you? Thoughts, please!

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Housing and Caregiving Updates

Just in time for the holidays. . .Five resources for parents and spouses with dementia and Alzheimer’s, then an interview about boomer and senior housing.

  1. The Alzheimer’s Association. Besides a Caregivers Center with educational resources, updates about the disease, a blog, and support groups, there’s a 24-hour helpline (TK), message boards to fit your situation and an online tool called the Alzheimer’s Navigator. It’s a five-minute survey that asks you questions about your specific situation, offers feedback on your answers, and helps you craft a customized action plan. The coolest part: it gives you resources in your local community.
  2. The National Institute on Aging’s Alzheimer’s Disease and Referral Center. Besides basic consumer information, it lists research centers, clinical trials and news. Another gov. site: alzheimer’s gov. with treatment plans and money matters.
  3. Alzheimer’s Foundation of America, with in-home care strategies and live chats or Skyping with a social worker.
  4. An AARP blog on best books for children about Alzheimer’s and dementia. (I’m biased, I wrote it.)
  5. The National Institute of Health’s list of organizations and associations

Green door houseAnd now, part of an interview I gave to housing expert Steve Moran from the Senior Housing Forum:

How do you see the needs/wants of seniors changing with the emerging wave of Boomer seniors?
As I said in a chapter I wrote in an upcoming book on retirement, “Boomers aren’t going to take aging lying down.” They refuse to accept today’s traditional nursing homes. Rather than grow old in isolation, the Me Generation (which should be retitled the “We” Generation!) plans to do it together. That could mean aging in place with community support and services, sharing housing or moving into a Green House family-style nursing home. And, aging in place technology will play a prominent role. The 78 million boomer demographic ensures they will have more choices if they demand them—which they are. It’s a fascinating time to be a boomer and write about it.

Because my focus very specifically is senior housing, which means in effect I am an insider, I worry that I don’t have the same perception of senior housing as someone who writes from a higher view.  How do you see the senior housing options that exist in the marketplace today?
Not varied enough, but making progress. We have multigenerational designs (Lennar’s Next Gen model and other companies.) Niche communities that are CCRC’s on or near university campuses. LGBT senior housing. The aging in place Village model. Cohousing. Active adult communities. Even with all these choices, the senior housing industry is still evolving and growing. You could say it’s in its adolescent phase!

If you were hired as a consultant to help design the perfect senior housing community what are the things you think would be most important?  What are the things that should be left out?
I’m not an architect, but here’s my dream: A good balance of privacy and social interaction, fabulous exercise facilities, first-rate medical care, a warm and responsive staff, and the ability to call the shots as much as possible. It would be within walking distance of a city or suburban town center so residents would be near restaurants, movies, stores, and people of all ages—the world outside their senior community.

Residents would be able to continue making meaningful contributions (volunteering, mentoring—feeling that they have a purpose). There would be ongoing, varied stimulation—lifelong learning, and rich cultural events not only in senior housing, but also outside the facility. When I look at the physical layout (central nursing stations, shared rooms, an institutional feel) and offerings in my mother-in-law’s nursing home (the highlight is bingo), I want to weep. At least when boomers hit the nursing homes, most will be following the Green House, neighborhood “home” model.

 Photo by jaciXIII courtesy of Flickr

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“If There’s Anything You Need”–Real Help for Caregivers

strategies that caregivers can use to get help from family and friendsYou know that blanket offer: “Call me if there’s anything I can do.” Guess what? There is! But you have to know how to ask to get what you really need. Someone can “help,” however, if you don’t need what they’re giving, it’s not really helping. 

Usually one family member–that may be you–ends up doing the brunt of the caregiving. But, no man is an island, it takes a village. You get the point.

You may be reluctant to request help from siblings, other family members or friends. This should make it easier:

So, why is it so hard to ask?

  1. You think you’ll get turned down
  2. You’re convinced no one can do the job as well as you and it’s quicker to do it yourself
  3. They’ll think you’re weak, ultra needy or shirking your duties
  4. You’ve given the impression that everything is under control and you don’t need help, or are not open to it

Let’s think about these fears:

  1. If they turn you down, it may be legit (it may be a bad time for them or your request may not be realistic). Ask another time. If they decline repeatedly, it’s possible they’re self-absorbed jerks!
  2. Okay, you may actually do the job better. That doesn’t matter. What matters is that your loved one gets help and that you get a break or have one less thing to do.
  3. If they think you’re weak, needy or trying to get out of caregiving, they don’t “get” it. Nothing more to say!
  4.  You may throw off an in-control, all-covered vibe, but they may want to help and not know what to do or how to offer assistance.

Here’s another way to think about corralling help:

  • Make a list of tasks that would be helpful. What are the people you want to ask good at? (If it’s math, have them help handle the finances or pay bills online; if they’re technology-adept, they could show others how to use a caregiving-sharing website–Care Innovations, Lotsa Helping Handsand others.
  • Be specific. Give them a choice of three things. Start with something small to get them on the team.
  • Suck up to your sisters and brothers! Tell them how appreciative you are for their past help, that you know how busy they are, and how important their pitching in is to you and their parent/friend/sibling. Check the accusations at the door! Saying “you never help. . .” won’t get you what you need. How about, “I really need your help”?

Even if you do get them to help, you’ll want to keep expanding your caregiving network so you try not to lean too hard on one person.  It could be friends, relatives, online support groups, church or synagogue members, or community resources. Just do it!

Photo courtesy of Pierre Pouliquin via Creative Commons

 

Posted in Caregiving

Look No Further: The 10 Best Books for Caregivers

books for family caregivers

Terrific resources

My office shelves are bulging with books for family caregivers. Publishers eager to get their authors reviewed keep them coming.

There are so many excellent ones that it’s probably unfair of me to create a Top Ten list. But that’s just what I’m doing! 

The list is in absolutely no order of significance. These books offer coping strategies and resources, explain critical concepts caregivers must know, and provide the information they need to make good choices. They’re worth the read:

  1. The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent, by Barry J. Jacobs
  2. They’re Your Parents, Too! How Siblings Can Survive Their Parents’ Aging Without Driving Each Other Crazy, by Francine Russo
  3. When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions, by Paula Span
  4.  Learning to Speak Alzheimer’s, by Joanne Koenig Coste
  5. A Bittersweet Season: Caring for Our Aging Parents—and Ourselves, by Jane Gross
  6. Passages in Caregiving, by Gail Sheehy
  7. The Caregiver’s Survival Handbook, by Alexis Abramson
  8. The 36-Hour DayA Family Guide to Caring for People Who Have Alzheimer’s Disease, Related Dementias, and Memory Loss, by Nancy Mace and Dr. Peter Rabins
  9. The Caregiving Wife’s Handbook, by Diana Denholm
  10. Caring for Your Parents: The Complete Family Guide by Hugh Delehanty and Elinor Ginzler

Have you read any of the books on my list? And?? Whittling down to ten means I’ve probably missed some  gems. What do you recommend?

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The 10 Top Caregiving Resources

Other good sources include:

According to the latest statistics from the National Hospital Discharge Survey, done in 2006, elderly patients underwent 35.3 percent of inpatient procedures and 32.1 percent of outpatient procedures. That number is even higher today. Carol Levine, director of the United Hospital Fund’s Families and Health Care Project, makes a good point: “Most family caregivers focus only on the day of surgery and not on what comes before and after. Yet in terms of outcome, these may be the most important times to prepare for.”

  • The Family Caregiver Alliance has updated fact sheets on caregiving issues. New, free online publications through the group’s National Center on Caregiving range from how to compensate a family member for providing care to “Downsizing a Home: A Checklist for Caregivers.”
  • The Caregiver Action Network recently released an online video series for Alzheimer’s caregivers and an online guide for navigating Medicare.

More must-know resources:

Of course there are more. What did I leave out? What else should readers know about? Please share.

Photo by Humayunn N A Peerzaada courtesy of Creative Commons

Posted in Caregiving

Tax Tips for Family Caregivers

April 15 is galloping into view. Give me a break! That’s what we all want when it comes to taxes. And this may be your year. Some of the rules regarding tax breaks for family caregivers have changed slightly since last year. I thought I’d do an update.

Software tax programs like TurboTax, TaxAct and H&R Block at Home are easy to use and do many of these calculations for you. It’s still good to know if you qualify.

You might be able to claim your parent, grandparent, stepparent, mother- or father-in-law, sibling, half sibling or step-sibling as a tax dependent even if he or she doesn’t live with you. Here are the rules:

  1. His or her gross income in 2012 must be less than $3,800 (last year it was $3,700) excluding disability and Social Security payments. That number includes rental income and wages, interest and dividends from investments or pension benefits and withdrawals from retirement plans.
  2. You must be paying more than 50 percent of his or her expenses.
  3. The person cannot be claimed as a dependent by anyone else.
  4. Mom and Dad can’t file a joint tax return unless it’s to claim a refund, and neither parent can owe tax on a separate return.
This is a little tricky: if you have siblings who are also supporting Mom or Dad, but none pays half or more in support, and you spend at least 10 percent of your money on their expenses, while expenses from all sibs combined are at least half of your parent’s yearly expenses — you can claim your parent as a dependent. But understand that only one sibling can take that “multiple support declaration” exemption per year. (AARP has a caregiver taxes Q&A and primer here.)

What if your relative’s gross income is more than $3,800? Then that person can’t be a dependent but might still qualify for a deduction on his or her medical expenses. Those expenses will need to be more than 7.5 percent of your adjusted gross income. (For 2013 taxes, the threshold will be 10 percent.)

You might also be eligible for the child and dependent care credit. If that’s the case, you’d get a credit of up to 35 percent of expenses paid for dependent care, with $3,000 in maximum expenses. That translates to as much as a $1,050 tax credit. Qualified long-term care services may be deductible as well.

To qualify for the child and dependent care credit, you must have earned income, your relative must be unable to take care of himself or herself because of mental or physical limitations, and the care recipient typically must live with you.

There’s also a credit for the elderly or the permanently and totally disabled, but just 100,000 a year lucky filers can take it. Generally, your annual income can’t exceed $25,000.

Confused? Overwhelmed? You can always call the Internal Revenue Service telephone assistance help line. Dial 800-829-1040 Monday-Friday, 7 a.m. to 7 p.m. local time.

Posted in Caregiving

Forbes Piece On Guns A Loaded Subject

What do you do if your aging parent has a gun? Okay, they've agreed to get rid of it. Now what?I wrote a piece for Forbes on guns and the elderly. I hadn’t realized that so many older people, some with dementia and Alzheimer’s, own guns until I started getting reader comments. What’s an adult child to do if Mom or Dad wants to hold onto their favorite firearm? Even if they’re ready to part with it, where do you take it once it’s out of their house? I thought the National Rifle Association might not like the idea for my post, but I received a letter from them thanking me for the story and letting me know they have a program to dispose of guns. So, if taking them to your local police department doesn’t excite you, you now have another option.

Here’s the post:

5 Things To Know About The Elderly And Guns

According to a Pew Research Center report, 35% of Americans in a recent survey said they have a gun, rifle or pistol in their home. Some of these may belong to your elderly Mom, Dad or Granddad (most often it’s a male) or the aging relatives of someone you know.

Over dinner the other night, my friend told me about the talk she had recently with her 89-year-old father. It wasn’t about driving, as you might think, but about giving up his gun. A loaded gun.

There’s great cause for concern: an older gun owner may have cognitive impairment or dementia, may have diminished eyesight and hearing (raising the risk of mistaking a family member or worker in the home for a bad guy), or may shoot a spouse or themselves. Yet from the older owner’s perspective, the gun may symbolize independence and control in a world where they might otherwise feel powerless.

That might include if he or she is ever in pain or has a terminal illness. A parent might never commit suicide, but still want to know the firearm is there. According to the Centers for Disease Control and Prevention, in 2010, 4,276 people age 65+ committed suicide by firearm and 3,367 people aged 55-64 died that way. The same friend whose dad had a loaded gun said that her parents always joked that if one of them no longer wanted to live, they’d made a murder-suicide pact. She didn’t think they were serious.

What would you do? What should you do? I asked Boston-based geriatric care manager Suzanne Modigliani and Bay Area elder care attorney Michael Hanson for advice. Here’s what they said:

  1.  Consider: Is the gun owner competent to keep a weapon? Why did he have it in the first place? To go hunting or protect himself from intruders? Are those same reasons valid today?
  2. If the answers to those questions suggest the gun should no longer be in your parent’s home, try to get his permission to remove the gun. Having the support of others, like siblings or a geriatric care manager or attorney, may be more effective than trying to convince him by yourself.
  3. If you can’t make headway, your parent has cognitive issues or you think the situation is dangerous, you’ll want to get it out of their house regardless. Call your local police department and ask them what to do. Should you bring it to the station? They may be willing to come to your house and pick up the gun.
  4. You can’t just remove a gun from someone else’s house and bring it to yours. In some states, that may be considered larceny. If you want to keep the gun, it will have to be registered in your name. Ask the police for help.
  5. A time to be particularly vigilant: when an elder is overcome by grief, such as after the death of a spouse.

Hanson, the elder care lawyer, didn’t realize his father owned a .22-caliber target pistol until he died. Hanson routinely asks clients, who are adult children or their parents, whether there is a firearm in the house. Hanson turned his dad’s pistol in to the police. And yes, he called them ahead of time and made sure it was in a bag “so I didn’t look like I was in Django Unchained!”

Here’s a thought from Jim Reardon, a Brookline, Mass., police firearms instructor: In some police departments, if you don’t want the gun to be destroyed, you can arrange to have a gun dealer purchase the firearm at the police station. Who knows, the gun could be valuable, and even if not you would get some compensation.

There’s always the NRA!

Photo by hey skinny courtesy of Creative Commons

 

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Tune In To Music Therapy’s Healing Powers

 

It’s amazing to see how making and playing music helps both those with Alzheimer’s and their family caregivers. For a story I wrote, I interviewed Gabby Giffords’s music therapist. I also watched a chorus in New York made up of dementia patients and their partners, spouses and kids. A moment of normalcy and pleasure–together–in otherwise very difficult lives.

Here’s a piece I wrote for AARP aptly named “The Power of Music”:

Geriatrician Theresa Allison can’t talk with her grandmother. Alzheimer’s disease has left her without the ability to see, converse or recognize her granddaughter. Yet the two are able to interact. Instead of talking, they sing. “I’ve watched her babble nonsense, but then bounce my son on her knee as we sing a folk song she taught me as a child. For 45 seconds, life is completely normal,” says Allison. “Engaging this way is profoundly meaningful.”

Allison, a musicologist as well as physician and assistant professor in the Division of Geriatrics at the University of California, San Francisco, sometimes sings songs with her frightened or confused patients to get them to relax during a physical exam. And she encourages generous doses of music in caregiving, whether the loved one is cognitively intact or has memory loss.

The healing power of music was recognized in ancient Greece; Aristotle and Plato wrote about it. And though the field of music therapy formally debuted in 1950, but has only recently gained many fans, including hospitals, adult day care and senior centers, and nursing homes. Health care professionals often refer patients to music therapists — the country has more than 6,000 music therapists nationally certified through the American Music Therapy Association and they can help you find one in your area. Health workers are also using music to treat a long list of conditions: depression, Tourette’s syndrome, Huntington’s disease, autism, Parkinson’s disease, stroke, brain injury and cardiac disease. It can be part of pain management and cancer treatments.

Lately, researchers have focused on how music can benefit those with Alzheimer’s. Anecdotal evidence shows that music can tap memories and reduce anxiety, pain, heart rate and blood pressure. It can help accelerate healing, boost learning, improve neurological disorders and increase social interaction.

Sophisticated imaging techniques such as PET scans and MRIs are beginning to reveal the full picture. “Neuroscientists who have wondered how someone with a stroke or brain injury can recover speech by singing, or why a person with Parkinson’s can walk or dance to music but not without it, have now acquired the technology to see, in real time, how music stimulates and activates networks in the brain,” says Connie Tomaino, executive director of the Institute for Music and Neurologic Function in New York. The research is still in its infancy, she says, but it suggests that music may improve specific function such as speech and movement.

If you’re a caregiver, music can also help you with daily caregiving routine. Music therapists offer these suggestions:

Select familiar songs

Most people remember music from childhood or when they were in their 20s. Does Mom love opera or show tunes? What songs make her dance?

After former U.S. Rep. Gabrielle Giffords was shot in January 2011 and suffered brain damage, she was unable to speak. But her mother knew her favorite songs — ”American Pie,” ”Brown Eyed Girl,” “Over the Rainbow” — and along with Giffords’ dad, husband and music therapist, surrounded her with the music she loved.

“Gabby could sing several words in a phrase, but couldn’t put a three-word sentence together on her own,” says her music therapist, Maegan Morrow, of TIRR Memorial Hermann hospital in Houston. Morrow had her sing her needs, such as “I want to go to bed” or “I’m tired.” Help your loved one recall words by singing part of a familiar song and having her finish the line with you, or alone.

 Choose your music source

Pick what works best for you: a CD player, an MP3 player or iPod, a tablet like an iPad or a Kindle, or a time-tested turntable and vinyl collection. No music of your own? Local libraries often have good CD selections.

The website Pandora.com will tailor a radio station to match your musical taste when you select an artist, song or genre. And Musicandmemory.org offers a free guide to creating a personalized playlist. (Find music collections we’ve put together from the website Spotify to help you with caregiving.)

Use music to alter moods

Diagnosed with Parkinson’s, Domenic Trifone, 59, of Newington, Conn., has difficulty walking and doing things on his own, which leaves the retired postal worker depressed. But when his wife, Susan, 56, plays Gregorian chants or opera, he is soothed. When she plays his favorite Billy Joel or Jim Croce songs, she’ll often dance, pulling him up to join her.

Donna Poulos has seen the effect music has on her 90-year-old mother, Grace Long. “When I’d leave her house, my mother would be sad, but if I put on classical or opera, she wouldn’t miss me. Instead, she’d wave good-bye, close her eyes and be transported by the music,” says Poulos, a grade school music teacher from Los Altos, Calif. When Poulos is driving with her mother, Long sways to the music and taps her toes, or they sing old tunes such as “Oh, What a Beautiful Mornin’ ” and “This Land Is Your Land.”

“I really think music is one of the things that has kept her alive and happy,” says Poulos.

Gear music to activities

You can use music to get loved ones through transitions, whether it’s moving from one room to another or on to a different task, says Alicia Clair, professor of music therapy at the University of Kansas. Play peaceful music when Mom is waking up. Pick up the pace with active, upbeat songs when getting her dressed for the day.

“One of the best ways to get directions across is to sing, rather than speak, them,” says Clair, who for 20 years has used music therapy for people with dementia. “Never use loud, frenetic music,” she warns. Need to coax a loved one into the shower? Put on Duke Ellington and dance together into the bathroom.

Make music together

Sitting together and listening to music can be bonding. Taking care of someone who can’t communicate can make a caregiver feel lonely and unable to relate, but music can provide a way to connect that is profoundly meaningful.

A pilot study by New York University Langone Medical Center’s Comprehensive Center on Brain Aging found that members of the Unforgettables, a New York City chorus made up of those with early to mid-stage Alzheimer’s and their caregiving spouses and children, reported more self-esteem, better moods, less depression and a greater quality of life after 13 rehearsals and one concert.

Joe Fabiano, 65, has been bringing his wife, Anita, 65, to the two-hour weekly rehearsals since the chorus was formed two years ago. “This is something we can share,” says Joe. “It makes me think of the old days, when we were happy.” Says Anita: “It’s good for my husband and helps me a lot. I like the camaraderie.”

That camaraderie can also ward off the loneliness that often accompanies caring for those with dementia. Husbands, wives and partners appreciate being with others who are dealing with the condition. “Having a place where there are people who can be together in a supportive, caring group is wonderful,” says Josephine Gruder. She brings her husband, Herman, 85, a former longshoreman.

Social worker Suzie Engel, 66, sang in the chorus with her mother, Norma, who died in January 2012. Engel still attends. “This group is like family,” she says.

The Unforgettables’ co-conductors, Dale Lamb and Tania Papayannopoulou, a music therapist from the Institute for Music and Neurologic Function and a pianist/singer, teach the group breathing, vocalizing, musical memory exercises and movement—good stress relievers as well as mental and physical exercise for all.

Not a singer? Consider rhythm. Drumming with others later in life is also a growing trend, according to Encinitas, Calif., music therapist and author Christine Stevens, who teaches health care professionals and family caregivers about percussion. “You don’t have to be musical whatsoever,” says Stevens. In her hospital room, former Rep. Giffords participated in a drum circle with her family and friends. Remo, a drum manufacturer, offers a “health rhythms” section on their website that discusses the health benefits of drumming and how to find a drumming group.

Tune in to your own needs

Music can be a great source of relief and pleasure. When her husband is at adult day care, during other times of the day, or before bed, Susan Trifone will turn on the tunes. “My body gets in rhythm to the beat and it makes me feel much better. But even more, music helps me get away from my everyday problems.”

There’s a (Music) App for That

If you can’t join a music group, you can mimic what they do with applications for your smartphone or tablet.

SingFit: Designed by a music therapist, this app is like a portable karaoke machine that helps participants sing along by providing lyric prompts, adjustable music volume and keys, and voice playback. Available for Apple products.

Magic Piano: Tap the dots on the screen and it plays songs at varying speeds. For both Android and Apple products.

Songify: This app turns something you said—a poem, a birthday greeting, a passage from a book—into a song. For both Android and Apple products.

 

 
 

 

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What Caregivers Don’t Tell Anyone

“Sally Abrahms can take her crown off now!” Ouch. That was one response to my story that recently ran in the AARP Bulletin explaining common emotions (guilt, grief, exhaustion) family caregivers have and strategies for dealing with them.

I was writing about my own experience — I’m a long distance caregiver, not someone who lives 24/7 with a sick or chronically needy parent — as well as what I have observed from my work.

That reader could have been less strident, but I do understand her point: being on the job full-time is more draining than what I do caring for someone from afar. Another disgruntled reader accused me of not being “a caregiver, simply a visitor.” Her reasons: I didn’t mention “changing an adult diaper, giving up your career, being tied to your home, watching your mom hallucinate and scream at 2 a.m.” Just because I didn’t mention them doesn’t mean I don’t do it. Right?

Yet the point isn’t who has it worse — a long-distance caregiver or a live-in family caregiver. (But if you want to describe, in the comments section below, what it’s really like to be a nurse/doctor/shrink/chauffeur/cook/companion, vent away!)

The point is that there are things about caregiving we really don’t tell anyone, even someone like me, who makes a living writing about caregiving and elder care. I was curious about what others don’t share with family or friends about their caregiving experiences, so I asked some AARP staff members, who are caregivers. Here are some of their answers:

  • “Seeing a parent of the opposite sex naked. You can never be prepared for that or discuss with family or friends.”
  • “Dealing with those who say, ‘she was fine while I was there.’ My mother can get it together to seem perfectly fine and charming to other people in social situations, but around paid caregivers and me, she unleashes the full frustration of her sadness, rage and confusion.”
  • “Having to play referee between my two parents. It sucks. No one wins.”
  • “Being in charge of my mother-in-law’s personal hygiene including her hemorrhoids. She isn’t even my mother!”
  • “Cleaning up pee and poop from the backseat of the new car or in public. You don’t know what to do first: help them not be embarrassed or clean it up. I don’t discuss this with anyone.”
  • “Being ridden with guilt, but hoping fervently that my parent, who has no quality of life, will die.  I don’t want to keep doing this!”

What are your secret thoughts about caregiving?

Writer’s request: I need to interview a family with a teen or boomerang kid, an adult parent, and their elderly/older parent(s) all living under the same roof. Do you fit the bill or do you know anyone who does? If so, please get in touch at sally@sallyabrahms.com. Thanks!

Posted in Caregiving

Caring for the Caregiver–my AARP print piece

I wrote this piece from the point of view of a long-distance caregiver. I can only imagine the added intensity when you are a 24/7 caregiver (and a few nasty emails told me I have no clue what it’s like!) The story has info for both long-distance and ’round-the-clock family caregivers. Let me know what you think:

At age 16 with my mother

Ever since I’ve been a caregiver, I’ve been waiting for The Call. If you’re caring for a loved one, you know what I mean — the telephone rings, and you learn that your parent has taken a turn for the worse and you must rush to his side. In the past 12 years I’ve taken care of my father, then my mother and now my 93-year-old mother-in-law. The Call keeps coming, and I’ve been on edge the whole time, waiting.

Last August my husband and I were reluctant to take our annual family vacation. Would something happen? But we went, knowing that time with our adult children, who live all around the country, was also important.

We had just entered the rental house when the phone rang. My mother-in-law had been admitted to a hospital many hours away. My brother-in-law gave us bedside reports, and she was released the next day.

On the last day of vacation, the phone rang again. My mother had had a massive stroke. I traveled for six hours to her and stayed in the hospital with her for six days until she died.

Caregiving brings about a swirl of feelings: sadness, frustration, anger, anxiety, guilt, resentment, confusion, isolation, loss, fear, grief, impatience and stress. I have been overwhelmed, drained by sibling tension and torn between my own family, work, personal time and parental needs.

I’ve also experienced devotion, tenderness, intimacy, gratitude, patience and purpose in my role. In fact, a recent study from the Sloan Center on Aging & Work at Boston College found that older Americans who feel they are making a difference in caregiving and are highly engaged in what they’re doing feel happier and more content. I understand that, as well.

But from my on-the-job training, professional reporting and research, including writing a weekly blog for AARP on the topic, I believe most caregivers confront three distinct and difficult experiences. With help from experts, I’ve also learned ways to manage them.

 Grief

Caregivers frequently grieve the loss of the person they once knew, even though their loved one is still alive. Until her first stroke, in 2008, my mother, a former university English teacher, read a book a day, without glasses, and was in three book clubs. Post-stroke, she could no longer see well enough to read and couldn’t process Books on Tape. Instead of dashing to a play, a lecture or a party, she stayed home, unable to walk unaided or get up from a chair by herself. She was a different person.

“When someone dies, it is an overwhelming and horrible experience, but it is the end of something,” says Suzanne Mintz, cofounder of the National Family Caregivers Association and author of A Family Caregiver Speaks Up: It Doesn’t Have to Be This Hard. “But with a caregiver, the grief is perpetual; it goes on and on and on.” Mintz has watched her husband, diagnosed with multiple sclerosis in 1974, lose his independence. “You grieve because you’ve lost the life you had, and you know it won’t be coming back. Both of you have the diagnosis — the person with the condition and the family caregiver,” says Mintz.

 One way to combat grief is to forge a way to relate to the “new” person. Chuck Niggley’s wife was diagnosed with Parkinson’s disease 27 years ago. “Do I ever think about what if my wife weren’t ill? Sure,” says the Beaverton, Ore., 73-year-old. “But I don’t spend time dwelling on it. I’ve given up going to a three-hour movie or a baseball game with her, but we’ve substituted things we can do together, like attending our grandchildren’s events and going to music programs.”

The arts, in fact, give caregivers and their charges a powerful way to connect. Interactive creative programs — such as songwriting, storytelling, dancing, playing instruments and painting — provide ways for caregivers and care recipients to relinquish their usual roles and enjoy a fun and stimulating sensory experience together.

New York’s Museum of Modern Art opens its doors to those with dementia and their caregivers each month. An art educator leads a discussion about master artists — van Gogh, Picasso, Degas — while the group views their works. This exercise taps into little-used senses and memories and ignites lively conversation, often making it impossible to tell who’s taking care of whom.

My mother had always loved poetry, so I would bring Robert Louis Stevenson’s A Child’s Garden of Verses, a collection of the same poems she had once read to me and I had read to my children, when I visited. She’d smile as we finished the lines together, and I felt close to the mother I remembered while relating to the person she had become.

Guilt

During caregiving guilt is constant. Guilt for not spending enough time with your loved one. Guilt for not tending to your own family. Guilt for having negative feelings. And guilt for resenting your new role. On my hundreds of trips back and forth to visit my mother, I remember thinking that — shame on me — I wish this would be over so I could get my life back.

What caregivers must remember is that this is a situation over which you have limited control and shouldn’t feel guilty about, says Alexis Abramson, a gerontologist and author of The Caregiver’s Survival Handbook. ”However, you are in control of how you react to it,” she says. And that is empowering.

Abramson advises reaching out to caregiving organizations that offer education and support, investigating elder-care benefits at work and resources in the community (respite programs, adult-day-care centers, transportation services), and scheduling time for yourself.

Without a network of support, caregivers often become isolated, which can lead to depression and their own serious health issues, and further exacerbate problems — one being guilt.

One way for caregivers to handle guilt is “to accept that having negative feelings about caregiving is normal,” says Barry J. Jacobs, a psychologist and author of The Emotional Survival Guide for Caregivers. ”You love the person you’re caring for, but you hate the caregiving. That’s normal.”

 Exhaustion

Caregiving often leaves the caregiver feeling depleted, both physically and mentally. For years, every other Saturday or Sunday my husband and I would pull a “doubleheader”: driving two hours to see my mother, then driving another hour to be with his mother, and finally getting back home by 8 that night, when I would fall into bed and not move. It was physically draining, sure, but the mental toll also wiped me out for the next day and left me dreading the time we’d have to return.

“That’s when the caregiving plan needs to be changed,” says Jacobs. “Caregivers need to be smart and strategic about setting limits on the tasks they take on, and recruit others to pitch in.”

Yes, taking the pressure off yourself is key. Hire outside help. Involve other family members and friends. A sibling or in-law who lives far away may be able to pay Mom’s bills online, deal with insurance companies or take time off to stay with her so you can take a breather. “When family members do pitch in, then everyone feels like a team in caring for a loved one,” says Jacobs. “Caregivers feel better supported and more resilient; family relationships become stronger and more enduring, even after their loved one has died.”

Talking out emotions with a friend, an elder mediator, a therapist or a peer group can also lighten the mental load. “Many of the caregivers I see who do well go to support groups,” says Lisa Campbell, a clinical psychologist who specializes in 50-plus issues at the Willow Wellness Center in Park Ridge, Ill. “It’s normal to feel overwhelmed,” she says. “Families are complicated.”

This is why, in part, there is no pat formula for navigating your own maze when you become a caregiver. Each experience is unpredictable, ever changing and unique. Your plan will require constant revision. You’ll need to reach out to others for ideas, advice and help, and that includes finding ways to take care of the caregiver — you.

 

 
Posted in Caregiving

What Long-Term Care Costs (A Lot!)

If you’re considering long-term care, expect to pay more for nursing homes, assisted living communities and homemakers/companions, MetLife Mature Market Institute’s annual 2012 survey reveals. Good news: the study of average national long-term care costs shows they’ve stayed the same for adult day services and home health aides.

Of course, rates and services vary by state and area; those differences are included in the survey. Take a look at national average costs:

  • A private room in a nursing home is $248/day, $222 for a semiprivate versus $239 and $214 respectively last year. That is a 3.8% hike for a private, 3.7% for a semiprivate
  • Assisted living increased to $3,550/month from last year’s $3,477 or 2.1%
  • A homemaker’s hourly rate rose 5.3% to $20, a dollar more than in 2011.
  • Adult day services stayed the same, or $70/day
  • The $21/hour cost of home health aides was the same as in 2011

Now that we’re crunching numbers, here are four more:

  1. In 2011, the median age of a nursing home resident was 82.6 years (16% were under age 65), with 66% made up of women, the U.S. Census Bureau reports.
  2. The average age of assisted living residents was 86.4 years.
  3. According to the National Adult Day Services Association, there are more than 5,000 U.S. adult day centers, with 260,000+ participants as well as their family caregivers. The average transportation cost for centers that charge is nearly $10 each way.
  4. 68% of home health care agencies surveyed give employees Alzheimer’s training; 98% don’t charge extra for those with the disease.

More detailed results from the latest MetLife study are available.

Are these costs what you expected? (My mother-in-law is in assisted living so I’m completely clued into the high price of care.)

Posted in Caregiving

Five Avoidable Caregiver Mistakes

Now there are probably a lot more than just five caregiving mistakes! But in the process of finding out what they were–and please, add your own–I discovered a cool collaborative model I wanted to share. It’s a concept you’re going to be hearing more about. Concentrate!

Here’s what I wrote in my AARP blog:

Trend alert or rather, trend-to-be alert. I recently heard of a new concept that sounds like a caregiver’s dream: a team of professionals from various disciplines (i.e. legal, financial, caregiving) who specialize in aging issues. Someone on the team steers you to other experts you need — and may not even realize you need. These pros confer to make sure all your bases are covered.

Rod Chamberlin, a financial planner in Irvine, California, has one such team. Besides a financial planner and eldercare lawyer, it includes a senior care placement expert, long-term care specialist, family advocate aka mediator, personal business facilitator (helps Mom cancel subscriptions and insurance, arrange documents, pay bills) and geriatric psychiatrist.

Clients hire whichever specialists they need and pay each separately.

I asked Chamberlin for the most common mistakes his group sees boomers make regarding their parents’ financial, legal, and care decisions. This applies to you, too!

Here are his top five:

  1. Becoming vulnerable to scammers and unqualified professionals. “It doesn’t just happen to dumb people,” says Chamberlin. “I’ve seen professionals whose parents were scammed!”
  2. Not having proper legal, financial, and healthcare documents. At the least, you need power of attorney, a will and/or trusts and an advanced care directive.
  3. Misunderstanding your options for senior care and how to pay for it: assisted living vs. a nursing home vs. memory care. They’re different, as is Medicare and Medicaid. Do you qualify for benefits i.e. a veteran or spouse of a vet may be eligible for paid in-home or long-term care? Some long-term care life insurance policies pay in advance on a death benefit (tax-free cash now), and, in some situations, a reverse mortgage makes sense to help bankroll care costs.
  4. Holding inappropriate investments and/or selling investments that trigger unnecessary taxes. A professional can identify the best assets to sell (to pay for care or simply maximize investments) that won’t have a big tax impact.
  5. Not taking advantage of tax credits, exemptions, exclusions and deductions. If you qualify, you may be able to claim your parent as a dependent or write off healthcare costs, for instance.

Chamberlin’s model is new; there aren’t many like it — yet. If you can’t find a similar group, then look for a legal or financial pro able to coordinate efforts with other specialists.

(Thanks, adult son, for the blog idea.)

Photo Courtesy of Ponyinarope via Creative Commons

Posted in Caregiving

Caregiving Tasks: They Keep Coming

Is  there a doctor in the house? You might as well be one, according to a new AARP study of family caregiver responsibilities. I just blogged about the research and realized how lucky I was that I didn’t have to perform medical tasks with my parents or  mother-in-law. Intravenous feedings? Caregiving is already so complicated emotionally and logistically.

 

Examine my blog:

Family caregivers: If you’re ever looking for a new career, you might want to consider nursing or medicine. Results from the national survey “Home Alone: Family Caregivers Providing Complex Chronic Care,” released this week, suggest your learning curve may not be very steep.

Yes, family caregivers still perform typical tasks such as bathing, dressing, toileting, eating, shopping and handling finances. But the survey reveals the scope of duties often goes far beyond these responsibilities to include handling wound care, administering intravenous fluids and operating specialized medical equipment. Home dialysis. Suctioning. Ventilators. Scary!

Add to the list uncooperative recipients, inordinate amounts of time required to perform these sophisticated tasks and stress over making mistakes. What’s more, many of the 1,677 caregivers who participated in this joint AARP Public Policy Institute/United Hospital Fund online survey felt they didn’t get enough training or support.

For further admiration of family caregivers, check out these critical survey findings:

  • 78 percent managed medication, including intravenous feedings, as well as injections. Nearly half dispensed five to nine prescription medications daily and 65 percent also took one to four over-the-counter pills.
  • Almost half, or 46 percent, performed medical/nursing tasks for those with multiple chronic physical and cognitive issues.
  • 53 percent who had medical/nursing responsibilities also coordinated care—more than double the rate of those who predominately gave personal care.
  • More than half who did complex nursing/medical tasks said there was no one else to do it or insurance wouldn’t pay for a professional.
  • The majority managing five or more nursing/medical duties believed their help allowed a family member to stay out of a nursing home. While caregivers felt that they were doing something important, more than half felt depressed or hopeless and more than one-third reported being in fair or poor health.
  • 47 percent had no training for managing the medications, with more than 60 percent saying they learned how to manage at least some of the medications themselves.

Okay readers. What kinds of caregiving duties do you do? Which do you consider the hardest and why? Do you have any strategies to make your job easier? Let’s get the conversation going!

Photo courtesy of cakencookiebakr via Creative Commons

 

 

Posted in Caregiving

Another Caregiving Concern?

Eduard Titov via Creative Commons

Here’s a trend with significant implications: Older adults are not just receiving care, but also providing (think sick spouse, a family member, friend, or neighbor). In one of my AARP blogs, I write about a study just released with steep statistics on this phenomenon. What community services do we have, do we need, to address these graying caregivers/care receivers?

Take a look:

A new national survey confirms what some of us already know: Many older Americans take care of others and are not just on the receiving end. Let’s get specific. In this first-ever United States of Aging survey, half of respondents identify someone as their caregiver, while nearly one-third say they care for another person.

Those are just two caregiving results culled from the survey, created by the National Council on Aging, UnitedHealthcare and USA Today. Its purpose is to gauge the readiness of communities and adults age 60+ to what I call the “silver deluge”—the 77 million boomers turning 65 to the tune of 10,000 a day.

The three groups decided to ask 2,250 adults age 60+ how prepared they are for their own aging and what they think of the resources available to them in their cities and towns.

Questions covered financial security, community resources, health and wellness, aging in place and caregiving. But don’t expect to see survey results here on all of these topics. Reminder: You are reading a blog on family caregiving!

Not to worry. You can still bone up on survey findings in these other areas.

Consider this a baseline survey. Comparing subsequent reports to it will be particularly insightful. Here are highlights from the inaugural report:

  • Close to half of caregivers say they would benefit from more community services. On that list is respite care.
  • 61% know their community has services to help them, yet just 15% have used them.
  • 21% more have no clue whether services are available where they live.

Have you ever thought about who will be your caregiver should you need one? How about who you may need to look after?

It may seem ultra premature to think about your own caregiving plan for the future. Get over it! You don’t have to make a move, but it’s important to begin thinking about positioning yourself so you’ll have an optimum caregiving situation. Will it be easier if you live closer to family or have them live closer to you? Can you create your own “family” with supportive friends, a retirement community, or consider other housing options?

Intergenerational cohousing? Aging in place and belonging to a “Village” membership network that offers social opportunities like movies, museums, theatre, a group meal, or book club, not to mention rides to medical appointments, discounted home repairs and even dog walking?

I’d love to hear what you’re thinking. Are you a caregiver who also needs care? Have any strategies you can share?

 

 
Posted in Caregiving

Six Ways Caregiving & Dating Can Go Together

What happened to sexytime and intimate relationships?

If you’re a caregiver who happens to be single (one-third of baby boomers are), there’s probably little time for romance. Nothing like having Mom or Dad to cramp your dating!

When you have other responsibilities—that would be work, boomerang or younger kids, grandkids, your own life—the significant time investment of caregiving can wring out every bit of desire, you have. Who even has time to think about dating?

But studies galore show that caregivers’ health often suffers. One way to take the sting out of caregiving is to take care of yourself. And this may include having a love life.

With better medicine and longevity, elder caregiving can go on for years. (I’m into my 12th straight year as a  long-distance caregiver.)

Of course, the logistics can seem exhausting: finding someone you want to date; becoming prepared (get over the guilt of doing something for yourself, dealing with what to wear, what to talk about); and, how to have your parent(s) cared for in your absence (should it be a professional, another family member?)

Here are six strategies that work whether you’re looking for love or just need a break and are perfectly happy solo:

  1. Find a support group of caregivers of aging parents (online, via telephone, or in person). What are some successful approaches these daters have used? What hasn’t worked? Who knows, you may even meet your next beau or suitor through one of these groups!
  2. If your parent is cognitively capable, let them know you need some personal time. Reassure them that you will still take care of them, but may be getting more support. With dementia and Alzheimer’s, try to keep their routine the same and their set-up familiar.
  3. Get them involved in “non-you” activities in the community so they have as full a life as possible and are not totally dependent on you.
  4. Once you’ve met someone you expect to stick around—and not a transitory date—you’ll want to introduce him or her to your parents. (Remember when we did the same with our boyfriends, girlfriends, and exes?)
  5. If your parent has dementia or another disease, get your new partner up to speed. Show them a disease-specific website or give them information on the condition before meeting Mom and Dad.
  6. Caregiving is a big part of your life now. If your partner seems unsympathetic or is unsupportive of your role, he or she is not a keeper.

Take a look at a new guide to caregiving and dating, aptly entitled “When your Only Date is Mom,” written by Kelly Scott of Emeritus Senior Living.

What have you found works best for you when it comes to dating? Or, what is keeping you from dating?

Photo by Ed Yourdon via CreativeCommons.org.

 
Posted in Caregiving

Eldercare Finally Recognized by Feds

 

Wahoo, eldercare has arrived! The latest federal survey, which tracks how much time people spent per day working, performing household tasks, engaging in leisure activities, and taking care of children in 2011, has a new category: Eldercare.

This entry into the annual American Time Use Survey (ATUS), put out by the Bureau of Labor Statistics, reflects the deepening responsibilities Americans age 15+ have for providing unpaid care to someone over age 65–perhaps a parent, spouse, relative or friend.

And just wait: Nearly 10,000 people a day in the United States will turn 65 in the U.S. for the next 20 years. As the 78 million baby boomers age, those number of hours are going to escalate big time.

Eldercare covers a lot of turf, from helping with meals and medication to grooming to transportation to companionship. Or really, anything else that needs to be done.

The ATUS is weighty information used in federal economic, health and safety, and family/worklife balance research, as well as for international comparisons. The inclusion of eldercare is significant. For laymen, it provides insight into how Americans spend time, what they do, and with whom. The study further propels momentum for coming up with solutions and policies to ease the burden of family caregivers.

Here are the survey headlines:

  • No surprise to some: 56% of the 39.8 million eldercare providers were women. Note that the male/female gap is getting smaller. The age 45-54 demographic provided the most eldercare (23%), followed by ages 55-64 (22%), then age 65+ (16%).
  • Surprise: A spouse or domestic partner provided just 4% of eldercare, while 42% cared for a parent, 20% for a grandparent, 20% for another relative and one out of four for a non-relative.
  • On average, 24% took care of at least one person 65+ every day, for an average 3.1 hours; 23% helped several times a week, 20% once a week; 20% several times a month; and around 11% once a month.
  • 85% of care came from someone who did not live with the recipient.
  • 69% cared for just one person.
  • Oh, boy! 23% of providers also had one or more kids at home under age 18. Can you say “sandwich”?
  • One out of six people in the U.S., or 16% of the civilian noninstitutional population ages 15+, spent time helping elders.
  • More than 60% of care for an older person came from someone age 45+; one-sixth by a person age 65+.

Which statistics did you find most interesting? My pick: Very few recipients live with providers. What is your eldercare situation?

Posted in Caregiving

Do You Mind? Meditation for Caregivers

Grand Velas Riviera Maya via CreativeCommons.org

It’s time to take up meditation. A new UCLA study shows it’s a great stress-buster for caregivers–better, in fact, than a relaxation CD. Participants were taking care of family members with dementia, but it could really apply to any group–and not just caregivers. Who wouldn’t want to feel less depressed and have a sharp brain?

Here are the details from one of my weekly AARP blogs:

For dementia caregivers, it seems that daily meditation can lower depression, improve cognitive functioning—yes, we’re talking about the caregiver here—and even reduce cellular aging caused by stress.

According to a recent UCLA study reported in the International Journal of Geriatric Psychiatry, meditation did a better job of keeping the blues at bay than a relaxation CD given to caregivers.

This study may be small, but compelling because:

  • 5.4 million people in the U.S. have Alzheimer’s
  • More than 15 million Americans do unpaid caregiving for those with dementia
  • 80% of care is provided at home by family caregivers
  • Close to 50% of family dementia caregivers are clinically depressed

Researchers had 49 family caregivers 45-91 years old (36 adult children and 13 spouses) divide into two groups. The meditation group learned a 12-minute Kirtan Kriya yoga practice that included chanting, finger poses, and visualization meditation.

The second group listened to instrumental music on a CD in a quiet place with their eyes closed. The groups did either meditation or relaxation listening at the same time every day for eight weeks.

And the winner is. . .meditation, with 65% showing a 50% improvement on a depression scale (vs. 31% for the CD group), and 52% with a 50% improvement in mental health and cognitive functioning (compared to 19%).

But the next finding may take your breath away. Meditation slowed cellular aging by increasing telomerase activity. Before I lose you: An enzyme known as telomerase is associated with health risks and diseases that can be regulated by stress. Without telomerase activity, the cells divide, and telomeres, as they’re called, become so short they die. So the more there’s telomerase activity, the longer the immune cells will last.

The group practicing meditation had a whopping 43% improvement in telomerase activity, while the relaxation group scored just 3.7%.

UCLA’s caregiver program has added yoga/meditation to its offerings. This doesn’t mean the relaxation CD wasn’t valuable. It, too, reduced depression, boosted mental function, and hiked telomerase activity.

You probably don’t have to take care of someone with dementia to benefit from the UCLA findings, either. Stress from any kind of caregiving can lead to poor mental and physical health. And, meditation can relax the body and the mind.

I’m planning on boning up on Kirtan Kriya. How about you? Here are some resources:

Or, contemplate these other articles on the power of meditation:

  1. Free mindful meditation podcasts from UCLA 
  2. Help for family dementia caregivers 
  3. American Meditation Institute

 



Posted in Caregiving

No Kids, Who Cares?

Excuse the flip title,”No Kids, Who Cares?” The question is, who will care for the one out of three folks ages 65+ who live alone when they need help? I know many single, older women who anguish over this question.

Many women never married, or are married without kids. Or, they may have children who live far away or from whom they’re estranged. It’s those adult children, if not a spouse, who usually wind up doing the bulk of the caregiving.

So, through my AARP blog post, I wanted to let readers know about a fascinating, new website started by Los Angeles social worker Marcy Cole called Childless Mothers Connect (don’t let the title confuse you, it’s for women childless by choice or circumstance). It could be a good place to discuss caregiving.

Fascinating figure: nearly half of adults ages 65-69 are self-employed, according to the latest Social Security Administration report.

Boomers: Take a look at this Forbes piece “Baby Boomers: America’s Hottest Group of New Entrepreneurs.” Love it!

Posted in Caregiving

Cool Technologies for Caregivers

The new technology for caregivers would make The Jetsons proud. Ever heard of GPS safety technology or wireless sensors that can notify a caregiver if Mom’s activities don’t make sense–she isn’t leaving her bed, or is leaving the house at an odd hour, for instance? It may sound Big Brother-ish, but it can be a godsend.

There’s lots for the active set, too: mobile PERS (Personal Emergency Response System)

A mobile PERS from MobileHelp

–think Medic Alert on the go–that Dad can use on the golf course, take the dog for a walk, or when out with friends.

For my weekly AARP blog, aging in place tech expert Laurie Orlov recommends the premiere products and services for caregivers.

New topic:

Loved this piece in the Wall Street Journal on 90-year-old Iris Apfel. The face of MAC cosmetics. Designer. Metropolitan Museum donor–I mean actual things, not $$. Professor. Party-goer. Creative aging to the hilt!

Posted in Caregiving

Bring on the Caregiving Talk!

The email is intriguing: My friend is gathering a group who are grappling with caregiving issues for a brainstorming dinner at her home. She feels overwhelmed, with a job and husband in Boston and very ill parents in Connecticut.

Not only do I write about caregivers, but I’ve been one for 14 years straight (first my father, then my mother, now my mother-in-law).

I’ve never met the others at the dinner table. At 58, I’m the baby, while one of the guests is turning eighty. Some of us have downsized, others have big houses they vow never to leave (that would be the 79-year-old who works full-time).

I think the conversation is going to be about how hard it is to be in this role—the exhaustion, the guilt, resentment, worry, and time drain, for starters. But, it’s really about how we can avoid finding ourselves in many of our parents’ positions when we’re their age, and how we make it easier on our kids.

The host mentions the mistakes she thinks her parents have made: Refusing to leave their house so that now, even with full-time help, her dad feels isolated. (Her mother has Alzheimer’s, her dad, late stage cancer.)

She wants to know what others think about moving near their adult children when they can no longer take care of themselves. (Most of us raise our hands.)

A guest says that as soon as she or her husband die, the other will move out of state near one of their two daughters. The daughters have already scouted out places and she’s seen them in each city. “What does she think?” we ask. She says, “It’s fine, I will make friends. But most important, I will be close to my child so my kids don’t have to worry about me”—the way she did with her long-distance parents.

How considerate, I think. My husband asks why we are so reluctant to lean on our kids when we need them, just as they have leaned on us (and still do) for so long?

A male in his 60s talks about how his parents died in a retirement community, in their own beds surrounded by friends and family. He says he, too, wants to grow old with caring people.

He has an idea: What if a group of friends buys a building rehab it and live together in separate units so they can help support one another?

I don’t have my life as an older person mapped out. I do know, though, that there are options (Cohousing? Live near a university?)– some yet to be invented: Assisted living on a cruise ship?

As I write this, I get a phone call from another friend in the throes of caregiving. How about getting a group together for lunch to talk about it?

We’re meeting next week. You can do the same.

Posted in Caregiving

When You Don’t Want to Be the Caregiver

We’re supposed to want to take care of our parents or aging relatives. And, if we don’t want to, we rarely admit it.

But what if they treated you terribly (i.e. critical, controlling, demanding) and now you are expected to treat them well? Perhaps you’re no longer close or there’s an unresolved conflict (your father, let’s say, cheated on your mother and doted on his new wife and kids rather than you or there was blatant sibling favoritism.)

You’ve kept your distance, perhaps, but age-related declines are forcing you to become more involved. Dealing with them now can reignite old hurts and resentments. Still, you may feel responsible and realize they’re not the same person today. Or, you may decide you don’t want to participate in caregiving.

Alexis Abramson, a gerontologist and author of The Caregiver’s Survival Handbook advises “not feeling guilty because you don’t have affectionate feelings toward your loved one—acknowledge them and move on. Caring for a parent doesn’t mean you have to coddle them … you just have to behave responsibly.”

Perhaps her best advice: “No matter what: Never lose sight of the fact that through your actions, you’re setting an example for your children.”

Lisa Campbell, a clinical psychologist who specializes in adults age 50+ at the Willow Wellness Center in Park Ridge, Ill., believes identifying why you’re caregiving and putting that into simple terms can help: “I’m caring for them because this is important to me, or this is the right thing to do, or what love means, what a daughter does, or what my faith calls me to do.”

Campbell also sees adult children who choose not to play the nurturer/caregiving role or get involved only minimally. “There are times when it just isn’t healthy or safe for people to care directly for relatives in need, and people should have the right to say ‘no,’” says Campbell. In these cases, you need to figure out a different support system.

Explore community resources at senior centers, agencies for aging, park districts, churches, neighborhood centers as well as consider professional help and/or shifting the task to a less conflicted family member or friend.

Connect with others in a support group, reach out informally, read books. “The people I see who do well go to caregiving support groups,” Campbell says.

Here are more ideas for those not brimming with love:

  •  Can you set clear boundaries, such as limiting the hours you’re available for calls or establishing grounds for cutting off contact (“If you swear at me, I’m hanging up”)?
  • What can you do so that you feel good about how you’re handling the situation, have no regrets, and are still self-protective?

Are you taking care of someone you’d—how to say it?—rather not? What gets you through?

Posted in Caregiving

Drawing Comfort from Museum Programs

Courtesy of the Museum of Modern Art

Do you know that many museums around the country, including the Museum of Modern Art, offer fabulous programs for caregivers and those with Alzheimer’s? I visited one at MoMA–incredible! Here’s a bit about it and others I wrote about in my AARP blog. Participants on both sides of caregiving were enthralled. And check out the Degas in that photo!

 

Posted in Caregiving

Caring for the Caregiver

Palliative care can be a godsend. I discovered it when my mother was in her final days last summer. My AARP blog on caregiving this week talks about how helpful it was not just for my mother, but for me. For anyone at the end of life (or suffering from medical treatment or a disease), palliative care is a terrific resource. Have you ever used it? What kind of experience did you have?

Whoever says that older adults tend to disengage from social activities and responsibilities as they age is dead wrong, according to a new study from the Boston College Sloan Center on Aging & Work. Well-being, it shows, is linked to active engagement in paid work, education, volunteering, and, yes, caregiving.

 

Posted in Caregiving