Challenging the Alzheimer’s Association to make “The Longest Day” relevant

TLD_Graphic1The Longest Day” is, according to the Alzheimer’s Association website,

“…a team event to raise funds and awareness for the Alzheimer’s Association®. Held annually on the summer solstice, the duration of this sunrise-to-sunset event symbolizes the challenging journey of those living with the disease and their caregivers. Teams are encouraged to create their own experience as they fundraise and participate in an activity they love to honor someone facing the disease.”

They have a cute, catchy video designed to inspire people to form teams, participate, and most importantly, raise money. They invite people to “… have fun from sunrise to sunset…show those who are facing Alzheimer’s they are not alone.”

underwhelmedWhoopee.

I get the symbolism of doing something from sunrise to sunset on the summer solstice, the longest day of the year. Designed to draw awareness to the plight of those who suffer from Alzheimer’s, the idea is admirable.

But it misses the point entirely.

As sole caregiver to a husband with younger-onset Alzheimer’s, I can tell you the “longest day” is not twelve hours of daylight–it’s more like The 36 Hour Day, and that’s 365 days, not one day a year.

While thousands of people are raising money and “awareness” bowling, singing, dancing, quilting, gardening, and otherwise having fun to “honor” a loved one, we caregivers will be doing what we always do–being agonizingly and exhaustingly aware of Alzheimer’s.

We’ll be answering the same question 21 times, helping a grown man shave and dress, looking for lost hearing aids and glasses, changing adult diapers, begging Grandma to eat her vegetables, wondering when the long-lost child, grandchild, sibling or friend will call to say “hello,” juggling meds, medical bills, and household maintenance, wondering if we’ve got enough money to make it until the next paycheck, managing our jobs, taking care of other family members and pets, and doing it all without sleep, personal care or companionship ourselves. Throw in unsolicited advice by friends, family and strangers and you’ve got the classic recipes for caregiver stress and burnout.

Dallas walkI’ve been a big supporter of the Alzheimer’s Association and will continue to participate in walks and other fundraisers, but frankly, I’m a little tired of the emphasis on “awareness” and the importance of fundraising. I’m ready for action. All the money raised for “research” hasn’t produced a new medication in more than 15 years, and nothing slows the progression of the disease. Alzheimer’s Disease is reaching epidemic proportions, and the organization’s own publication shows the toll it takes on caregivers, personally and financially, and that’s old news. The Shriver Report did a better job of illustrating the challenges family caregivers face–and that was in 2010. We’re not going to cure this disease in any of our lifetimes–why not help those of us caring for the very people the organization wants to help?

How about a little service for caregivers?

Yes, I know some chapters do provide respite care and other services, but not the one in my area.  Caregiver training is fine, but how about taking some of that money raised and funding some free or low-cost day care or respite care that includes nights and weekends, or in-home care? Why not subsidize some respite and home care services that, right now, are out-of-pocket and not covered by Medicare, insurance, or Medicaid? (And aren’t tax-deductible, either.) How about some volunteer training for churches interested in homebound ministries?  How about some stress relief on an ongoing basis?

There is a stigma attached to Alzheimer’s–it’s probably at the root of the isolation and abandonment many caregivers experience when friends and family drift away. It makes it hard to get church members and other volunteers to come sit with someone while the caregiver gets out for a few hours of necessary errands or a little recreation.

Many nonprofit and government respite programs have maximum income qualifications, and they are so low that middle-class people don’t qualify. In fact, unless you’re rich or indigent, you can’t get help most places in this country.

Make the Longest Day a Service Day

The Alzheimer’s Association could do a lot to make “The Longest Day” a relevant and life-changing event for a broad base of participants.  June 20 (or the nearest Saturday) could be turned into a day of service along the lines of the Martin Luther King, Jr. National Day of Service or the National Day of Service on 9/11.

The Longest Day could become a day that takes on a new meaning, and a life of its own while bringing genuine awareness about this devastating disease. It could bring people into direct contact with those affected by the 6th leading cause of death in the United States. It could reunite families, motivate ministries and service organizations, and reduce the fear and stigma associated with the disease by exposing volunteers to the actual people they’re helping.

What will you do

Instead of forming a team to garden all day to “honor” a loved one, how about fanning out in the community and doing gardening work at the homes of people with Alzheimer’s?Raise money to buy plants and mulch, and rebuild flower beds. Trim trees and shrubs. Lay down soaker hoses. Replace high-maintenance plants with native plants. Better yet, help the person with Alzheimer’s do a little work to stimulate their mind and enhance their feeling of self-worth while improving their quality of life.

memory mitts kate and lynsey_v_Variation_1Knitting and crocheting? Comfort mitts are a great way to use up leftover yarn and sewing notions. Also called Twiddle Muffs, there are literally thousands of ideas out there (knitted, crochet and sewn), and if you spend a little time getting to know the person you’re making it for, you can personalize it to their interests.

Quilting? Spend the day helping several Alzheimer’s patients make a quilt or shawl they can use at home, or make quilts, shawls, and tote bags to fit over walkers and wheelchairs, and distribute them to Alzheimer’s patients.

Home repair? Get a group together and do home repair or debris cleanup at the homes of people with Alzheimer’s–check the weather-stripping on doors and windows, insulate the attic, do a safety check and secure the home from hazards. Get an electrician to help install motion-activated light switches, which increase safety and save energy. Paint, repair, clean, build a wheelchair ramp or install grab bars. Ask what needs fixing, get the materials donated, and fix it.

Good at organizing? Help a worn out caregiver do laundry, organize closets and drawers and figure out a system that will ease his or her burden when it comes time to get the loved one bathed, groomed and dressed every day. Help sort stuff and organize things for a garage sale–and then help them publicize and run the sale.

Haul stuff to recycling or a thrift store. Change the oil in the car, check belts, hoses and fluids, rotate the tires.

Stay with an Alzheimer’s patient and let the caregiver go out and play–and while he or she is out, make dinner or do some chores around the house as well as entertain the caregiver’s loved one. If the person with Alzheimer’s is up to it, take him or her to a museum, concert, park, or a movie–a change of scenery will be welcome. Take them to the local animal shelter to walk dogs and play with adoptable pets.

Scrapbooker? Adopt an Alzheimer’s family and go through family photos, memorabilia, and other items and put together memory books using your leftover scrapbooking materials to make it pretty. While doing so, talk to the person, listen to their stories and relieve their loved one of the burden of hearing that story for the 59th time.

Like to cook? Bring some friends and binge cook a  couple weeks’ worth of freezer meals or crockpot meals.

Raising money is great, but many of these suggestions cost little more than time. With planning, Alzheimer’s patients can be identified through caregiver support groups, social service agencies, churches and neighborhood associations, social media and inquiries via traditional news stories. A questionnaire will help personalize the day of service to each family’s needs, and background checks can be performed by most nonprofit organizations dealing with volunteers. Advance planning will also enable fundraising and securing inkind donations of supplies needed for these projects.

Everything suggested above can be done as part of The Longest Day, but most are also ongoing needs for people with Alzheimer’s and their caregivers, and should be considered whenever organizations are looking for volunteer projects throughout the year. Pushing more cities to join the Dementia Friendly America initiative, or starting a Share the Care chapter in each city is a good start, and both can partner with the Alzheimer’s Association to make a tangible difference in the lives of patients and their caregivers, most of whom probably won’t live to see a cure.

For most caregivers, every day is “The Longest Day.”

The Alzheimer’s Association won’t like my suggestion to turn what they want to be a cash cow into a workhorse, directly benefiting thousands of Alzheimer’s patients and their weary caregivers. But I’m challenging the association–and other groups–to mobilize and make “The Longest Day” a meaningful experience that makes a genuine difference in the lives of everyone involved–on the summer solstice and the rest of the year.

 

 

 

Bill #ENDALZ
Why I rant–Bill Bufkins, April 2016. #Endalz

 

 

 

 

 

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5 thoughts on “Challenging the Alzheimer’s Association to make “The Longest Day” relevant

  1. Dear Samera, tonight God led me to your blog. I was googling resources for my exhausted mother who averages 2-3 hours of sleep at night and runs non stop all day caring for my precious daddy. He has this heart breaking disease. NO ONE will ever understand or comprehend how the caretaker feels or what they go through physically and mentally, especially when it’s your husband(spouse) that you are caring for. I try to help her as much as I can but its not nearly enough. I have a full time job and 2 young boys in school with numerous after school activities to attend. So most days we just talk on the phone, which usually lifts her spirit to be able to vent. My mom is retired but to Survive financially each month, she works a few hours every Sunday morning at a church daycare. This job is her escape, one of the few things she has left to look forward to. I only live 20 min. from them so every Sunday morning, it’s me and dad time. I enjoy every second I spend with him. Yes, it’s heart wrenching to see my sweet dad sitting in his chair with zero energy, spunk or motivation when just 2 years ago, you couldn’t force him to sit for a second. He was always playing with his grandsons taking them for rides on the tractor, working in the yard and building sheds and playhouses. But now, he sits frail, weak and lifeless in his chair while asking me help him call his brothers and sisters who’ve passed away years ago….or talking about needing to go “upstairs” (they have a one story house) to find the bathroom in his house that he’s live in the past 20 years. But sometimes out of the blue He will say something that totally makes sense or something cute and funny that he used to say. It melts my heart and gives me that feeling that my daddy’s back. But, doesn’t take long for ugly reality to show back up and rub in the false hope. My dad was an amazing pianist. Some of my most precious memories as a little girl was sitting at the piano with him and playing our duets. Oh what I’d give for one more duet with him.
    I want you to know that every time I whisper a prayer for strength for my mom, I will be saying a prayer for strength for you. Thank you for sharing your story and showing my mom, and others, that though they feel despair, they’re not alone.♥️

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    1. Thank you for your prayers and support. I apologize for taking so long to respond–I haven’t been keeping my blog up to date but will try to do better in the future. I just posted a new post about our latest adventure. I hope the links to sites on the side of my blog help you. Nobody understands what we go through. Thank you and God bless you.

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  2. Samra,
    The Longest Day allows people to create their own idea of how they want to help in the fight to end Alzheimer’s. Here are just six events in the St. Louis area …
    1) Matthew Phillips https://theimpactof12.com/category/12-miles/
    2) Last Sunday 20 people made fidgit blankets and pillows that were donated to those living with Alzheimer’s
    3) Longest Day Mini Retreat: We invited 17 families facing Alzheimer’s to come in for a day of fun and relaxation for individuals with memory loss and their loved ones.
    4)Longest Ride- A staff member is riding the metro train all day and interviewing families, researchers, doctors, politicians for radio to raise awareness
    5) Lemonade Challenge: Two 10 year olds raised $125 for Alzheimer’s in their neighborhood
    6) The nuns at Naomi house are praying all day
    Betsy Brown

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    1. Thank you for including meaningful activities that impact caregivers and the people they care for. Your mini-retreat is a great idea. I would like to see more groups do more, though, to make this a national day of service to those with Alzheimer’s and other dementias. If we keep getting the word out, and pressure the Alzheimer’s Association to make it more than a fundraiser, we’ll increase awareness through first-hand contact with people suffering from this miserable disease.

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