Tag: Alzheimer’s Association

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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Finally! Somebody’s paying attention to Alzheimer’s caregivers. (Part 1)

forget-me-not-flowers-22283849

It’s been a while since I’ve updated the blog. A lot has happened, and I’ll get to all of it in future posts, but this CBS News story  really strikes a nerve, and I can’t go to sleep without writing about it.

Quick update: Near the end of January Bill slipped or tripped and hit his head on the vent hood over the kitchen stove. While he never lost consciousness, he suffered a subdural hematoma, spent two days under observation in the ICU at Denton Regional, and suffice it to say maxed out his annual deductible and yearly out-of-pocket expenses by January 28. (An ER visit including ambulance ride, 3 CT scans and an MRI and two days in ICU will do that to  you.) That saga isn’t over, but this blog post isn’t about that.

People constantly tell us caregivers how heroic we are, or how they “don’t know how [we] do it.”

We don’t know how we do it, either, and no, we’re not heroic. Heroes do what they don’t have to do. They do it out of courage and often without thought–they act on impulse. We caregivers do what we do because we have to—because nobody else will and most of us don’t have the money to pay for all we need. (And those who can pay still have to deal with the pain of seeing their loved one slip away a bit every day.)

I’ll boldly say you don’t know how we do it–because you are relieved YOU don’t HAVE to do it.

Yet.

2025

Every 66 seconds somebody in the United States is diagnosed with Alzheimer’s Disease. Throw in the many other types of dementias, and we’re dealing with an epidemic. I’d wager in a couple of years 100% of the population will either have some form of dementia or will have a family member with it. The Alzheimer’s Association just released a new study with some shocking figures.

heroThere’s nothing heroic about being an unpaid caregiver to an Alzheimer’s patient. We’re isolated because our friends don’t ask us out any more or come over to visit; family members desert us, we’re tired all the time, scared most of the time, and angry much of the time. Those of us who still have jobs, at least have a little outside contact, but that spouse who is full time caregiver in the home probably finds the UPS guy delivering another crate of incontinence supplies the most enlightening conversation he/she has had all day.

And a lot of us are broke.

Hubby is getting to the point I can’t leave him alone as much as I used to. Oh, sure, he can heat up food in the microwave, make a salad, soup or sandwich, brew coffee in the Keurig, and do toileting, etc., independently, but he has no mental or physical stimulation. The video monitoring system I have in the main rooms of the house prove he sleeps way too much when he’s alone, or just watches TV. He’s bored, and since initiative is often one of the first things to go, he rarely engages in productive activity without prompting. That only adds to the rapidity of his cognitive decline. Years of asking people in his men’s group or other groups to schedule some time to come visit, play Monopoly with him, engage in activities at the Senior Center, go to the animal shelter and walk dogs, do ANYTHING, have fallen on deaf ears. So now I’m looking into paid caregivers, and I don’t like what I see.

Most caregiver assistance agencies in our area charge $17–$20 an hour with a 4-hour minimum and a regular schedule set in advance. That doesn’t work for an academic schedule, which can be erratic and hectic. A “quick trip” to the office often becomes a 4 hour ordeal because I must have a microchip implanted somewhere in my body that sends out a signal when I’m on campus and near my office. Needy students and needy colleagues all get a slice of my time when I’m in the building. Don’t get me wrong, I enjoy them all, but when I’m distracted by the urge to get home, not so much. And forget getting a caregiver on short notice. You think getting a baby sitter is hard? Try getting a caregiver from an agency after hours or on weekends without lots of advance scheduling.

A friend at church who volunteers for a hospice bereavement ministry identified a recent widower with the same interests as Bill’s, and this gentleman is coming over one or two nights a week when I teach an evening class. I make sure both guys are fed, either by throwing something into the crockpot or shoving a casserole into the oven, or ordering a pizza. I assume they have some meaningful conversation. It’s better than nothing, and Bill feels useful because he feels like he’s helping his new friend, as he says, “be less sad.”

I’m considering a paid caregiver one or two days a week–someone with Bill’s interests and ideas for enrichment activities that can slow Bill’s cognitive decline. But those aren’t cheap, and I’m still paying down debt run up during the years (pre-diagnosis) when Bill couldn’t hold a job and we lived off credit cards because I was working part-time. Bill has never been particularly forthcoming about our finances, and I was content with that. His parents were good with investments–mine had a checking account and a savings account. Little did I know disease was messing with his brain long ago, and that messed with our finances. I expect my retirement home (assuming I outlive Bill) will be a park bench somewhere.

Our house, with a great floor plan, gorgeous yard and pool in a wonderful neighborhood, is paid for–we inherited it from his parents, who did little more than change light bulbs for 40 years, so there’s the 1969 wallpaper and shag carpet to deal with, among other things. Theoretically, all I have are utilities, property taxes and maintenance. Still, it really hurt when a service organization–one that has helped us out with manual labor in the past, and that my husband is a dues-paying member of–responded to a recent request to schedule a project they volunteered for last year with “…consensus is you need to downsize and move to a place easier to maintain. In the meantime you’ll just have to find someone to do that work or pay somebody to do it.”

Easy enough for you to say. Are you offering to help with that downsizing sale (at which I’m lucky to get 50% of the proceeds if I hire a contractor), property cleanup and move us to a place where I’ll have a mortgage payment or rent? Then, are you willing to help with the inevitable confusion and wandering that comes with moving an Alzheimer’s patient away from his longtime home? No, you’re just giving advice to a drowning person.

fbfc22a6f978781b1da988d565ac861aAlzheimer’s does that to people who don’t live with an Alzheimer’s patient every day. Fear of the unknown takes over. It makes them uncomfortable when the person loses executive function, suffers memory loss, or starts to confabulate a story. They’re embarrassed by minor behavior aberrations.

So that discomfort leads friends and family to distance themselves, because it’s easier for them to just walk away.

But it’s not easier for the caregiver, who has no break from the routine and the drudgery. No adult conversations at dinner. No stimulation. Never a moment alone at home.

And when that stranger in a familiar body is your spouse, your soulmate, with whom you shared adventures around the world, laughed at inside jokes and received moral support from after a tough day at work, the pain is almost too great to bear. But bear it we do.

The recent Alzheimer’s Association study points out a lot of issues caregivers deal with often, if not daily. More than 15 million Americans provide unpaid care to someone with Alzheimer’s disease. If that number doesn’t impress you, this one should: 83% of assistance provided to older adults comes from family members, friends or other unpaid caregivers.

The study goes on:

“In 2015, caregivers of people with Alzheimer’s and other dementias provided an estimated 18.1 billion hours of informal (that is, unpaid) assistance, a contribution to the nation valued at $221.3 billion. This is approximately 47 percent of the net value of Walmart sales in 2014 ($473.1 billion) and eight times the total revenue of McDonald’s in 2014 ($27.4 billion). The value of informal care (not including caregivers’ out-of-pocket costs) was nearly equal to the costs of direct medical and long-term care of dementia in 2010.”

Yeah, that’s real money. And it doesn’t include our out-of-pocket expenses for security, paid assistance (not tax-deductible or covered by insurance) or additional caregiver medical expenses due to stress, injuries from lifting the person we’re caring for, and so on.

Add in the stigma attached to Alzheimer’s, and you’re looking at a ticking time bomb.

Next time:

“Alzheimer’s remains the sole major cause of death in industrialized countries that lacks a disease-modifying treatment — despite billions invested in trying to find one.”

Ambiguity and turning 60

Ambiguity and turning 60

 Warning–This is a long one.

Bluebonnets near Brenham

Yesterday, April 21, was my birthday. I wish I could say it was a happy day, but it wasn’t. Except for the great time I had with my wonderful students, it was one of the saddest days of my life, and not because I turned 60.

I was looking forward to turning 60—age doesn’t bother me, never has. I’ve never understood people getting uptight over “milestone” birthdays beyond 16 and 21. Maturity, and the experience that builds it, is something to celebrate.

IMG_20141018_195150For as long as I’ve known my husband Bill, he has spoiled me with love and treats on every birthday and anniversary. Flowers and cards sent to the office. Candy. Gifts like jewelry, Hermes scarves, camera equipment, you name it.  Every birthday and anniversary was an event.

Bill hasn’t known when it was my birthday or our wedding anniversary (May 1) for several years now. Valentine’s Day comes and goes. Christmas and Easter mean something because of the special liturgies at church, but half the time he doesn’t know what day of the week it is.

I truly don’t miss the gifts, the cards, the flowers. I miss the companionship. I miss the stimulating conversations over dinner, or a TV show, or while cleaning the kitchen and doing laundry. I miss him responding intuitively with a hug or sympathetic look when I’ve had a bad day or don’t feel well.  I miss reading the Sunday New York Times out loud to each other and having a good-natured argument over some stupid politician.  I miss sending him out to the store to pick up that one ingredient I didn’t realize I’m missing until I’m half way through preparing a new recipe (Now I have to drop everything and go myself).

And yes, I miss the affection.

My soulmate is gone and what’s left is the physical shell of the guy I married (although that physical body is in better health than mine). The memories of all our travels, our happy times, our plans for the future, are mine and mine alone. He can’t remember the cats’ names. When will he forget mine?

Continue reading “Ambiguity and turning 60”

Sharing the word about the Alzheimer’s Association

Connections are important in life, and I was pleased to learn my friend and PRSA colleague Gregg Shields had gone to work at UTSW Medical School.

Denton Walk to End Alzheimer's, 2014

Gregg called me to tell me he was excited to be assigned to the Neurology Clinic, and especially the Alzheimer’s Center. I told him how great the doctors and staff were, and then he asked me if he could write an article about Bill and me for their upcoming newsletter.  You can view it by clicking here: 361_Spring 2015 Alzheimer Newsletter_L5

In the “small world” department, when Gregg asked for a recent high-resolution photograph, I immediately thought of our staff photographer in the Mayborn School of Journalism where I teach. Junebug Clark and his father are well-known, especially in the Detroit area, where Gregg is from. So this project also brought two transplanted Detroit natives together.

I hope you enjoy reading about Bill and me, and also learning about the good works of the research team at UTSW. Let’s find a cure for Alzheimer’s, and soon.

This post originally appeared on TheViewFromLittleD.com

Coping with Loved Ones who may Wander

My last post about the Medic Alert bracelet apparently caught the attention of a reporter who worked with the Dallas chapter of the Alzheimer’s Association on an article about wandering. It’s a pretty good article, but I’m a little disappointed at one small omission. While talking to Bill the reporter asked him about his wandering adventure and he mentioned he saw a road sign for Princeton, and drove that way because he had lived in Princeton, New Jersey when he was younger. That’s the first I’d heard of that reason for his going that way, but it’s important to note that people with dementia often wander because of some clue to their past.