Alzheimer's: It's Personal

Early last Sunday, May 15, I drove out to Kensington Metro Park to participate in the sixth annual "Race for Your Memories" to benefit the Alzheimer's Association, Greater Michigan Chapter.

I wasn't running in this race. (Though I have run plenty of 10Ks over the years.) I drove the nearly 50 miles from the east side to help my new friend and colleague, Elizabeth Lorge of BrightStar of Brighton, set up a BrightStar tent and distribute literature to runners and their families.

As I unpacked the brochures about BrightStar's home care services for seniors, I thought of why I was here: On this day, one year ago, Dad died.

It seemed all too fitting to be in my new role on the first anniversary of Dad's passing. A year ago, I was a Ford Motor Company manager on bereavement leave. Today, I am a Ford retiree preparing to open a BrightStar agency of my own on the east side.

Caring for my both elderly parents in the months before Dad's death (and continuing to care for Mom now) made an impact that ultimately pulled me in a different direction. Two weeks ago I said goodbye to my friends at Ford. And this morning, I came to meet Elizabeth and watch and learn as she introduced BrightStar to the runners and their families on this cold, rainy morning at this important Alzheimer's benefit.

Dad didn't suffer from memory loss. He saw what was happening to Mom and did what ever he could to prove he was still "sharp," as he'd like to say. He kept a jigsaw puzzle going on the dining room table. When he finished it, he glued the whole thing to a big piece of cardboard so he could enjoy the picture, leaning it against a growing stack of other glued cardboard images in his bedroom. Dad was always designing, fixing or making something. He'd point to his bald head with a big smile when one of us complimented his handy work.

Mom wasn't so fortunate. She lives with early stages dementia today and requires live-in care, which I will talk about in future blogs.

For now, I'd like to advise on understanding and recognizing the early symptoms so you can begin discussions with doctors and other community experts sooner rather than later.

Mom's dementia was called to our attention by the compassionate staff at Evangelical Homes of Michigan in Sterling Heights, where she was sent for rehab after leg surgery. [See "When Life Changes," May 5, 2011]. They worked with Mom for weeks before discharging her, saying they'd done all they could and dementia was impeding the progress. She couldn't follow simple instructions on how to use a walker to prevent putting weight on her injured leg. "Can't follow instructions, or won't?" I asked the medical team during our discharge conference. "Can't," the social worker said, softly.

In the hallway, outside the conference room, I leaned my head into my husband's chest and cried. "We've lost her," I said.

We don't know what is causing Mom's demential, because she has not been tested for Alzheimer's. But looking back, my family can identify symptoms that began to surface years ago. Busy with our own lives, we chose to overlook her symptoms at the time. The first clue came the year she gave up making Christmas cookies to send to her out-of-town children and their families. Barbara, my sister and Mom's baking buddy, tried to put a date on the calendar. Mom declined, saying she "had no will" to bake this year. We looked at each other, each silently wondering, but let it go. One less thing to do in a crammed holiday season.

Not long after that, Mom quit her card club, complaining that the other players were cheating. My sisters and I looked at each other, again silently wondering where this came from, but let it go.

Then Dad was getting on her for making mistakes in the checkbook. On another occasion, in the middle of a conversation while driving up north, she started talking to me as if I were my sister Theresa. It lasted a only few seconds. Like that it was over, and we were back to our normal chatter. I remember thinking, "What was that? Did she just do what I think she did?"

Alzheimer's and the dementia it causes is growing rapidly and affects not only the victim but every person around her. The numbers are staggering: 5.4 million Americans live with Alzheimers. Last year, 15 million caregivers provided some 17 billion hours of unpaid care. It's the 6th leading cause of death and the only among the top 10 that cannot be prevented, cured or even slowed down. Since 2000, deaths from all major diseases, including HIV, stroke, heart disease, have decreased while deaths from Alzheimer's have increased -- by 66 percent.

See this incredibly powerful two-minute clip at www.alz.org/alzheimers_disease_facts_and_figures.asp.

The race started and the runners began making their way through beautiful Kensington Park. I thought of Mom. Then I said goobye to Elizabeth and headed to my car. The memorial mass at St. Thecla's Catholic Church would start in an hour. As I pulled on to I-96, heading east, I thought of Dad.

Time to Ask for Help

Two years ago, when Mom was in rehab, I began to look around for help.

Despite his insistence to the contrary, Dad, 89, could no longer stay alone. He was a diabetic on coumadin and had taken a recent fall. Trying to get himself up, he scraped his arm on the carpet and tore his paper-thin skin. He bleed through many bandages before he agreed to be seen. 

As I went through the list of local in-home care providers that I had received from the Macomb office of the Area Agency on Aging, I didn't find immediate help, but was often glad just to hear an understanding and knowledgeable voice on the other end of the line.

It wasn't easy, but eventually we convinced Dad to sign up for care. The agency we settled on sent Mike, an experienced  man in his 40s who had taken care of his own father. Mike was a perfect fit. He won Dad over by raving about the 1994 Lincoln Towncar in the garage. Mike sealed the deal when he proved he was good with a wrench. 

For years, my sisters and brothers had tried to get Dad to let us move the washer and dryer from the basement to the first floor laundry room. He refused, saying that we "wouldn't do the job right." But early one Saturday morning in late October, while Mom was still in rehab, Dad said yes to Mike.

For the next several months, Mike was Dad's companion. He fixed a leaky faucet and ran the vacuum. He cooked breakfast and reconnected a wire from the TV to Dad's headphones near his recliner. Gradually, he got Dad to succumb to his help with personal things like pulling up his socks and stepping in and out of the shower -- things that were becoming increasingly more difficult that he kept from us girls.

The value of this kind of care is hard to put a price on. Not only did Dad get good personal care, he had a companion, he made a friend. Mike showed Dad that having help made him no less of a man. 

Earlier that year, I ducked out of work in the late morning to take Dad to a doctor's appointment. Sensing that I was rushed, he said to me in the car: "We're really getting to be a pain in the ass, aren't we?" At the time, I just wanted to get him to the appointment and back home so I could return to work. I let pass an opportunity to discuss the inevitable.

Mike not only helped Dad. He helped us all. The guilt of not being there to make a meal. Gone. Not being there to watch TV with him in the evenings. Gone.

In-home care is not covered by Medicare. And my folks lived on Social Security and a little help from my siblings and me. 

Through my late-night clicking (of the mouse), I came across the Mt. Clemens law firm of Simasko, Simasko & Simasko, which called themselves specialists in elder law, estate planning, Medicaid and VA benefits (www.simaskolaw.com). Rick Lemanski, the VA benefits expert in the office, suggested that Dad would likely qualify for a VA benefit called Aid and Attendance. If he did, he'd receive the maximum benefit -- $1,949 a month for his time in WWII.

Rick navigated the VA bureaucracy for us. I delivered the pertinent documents and Rick did the rest. Two months later, the extra money was coming in.

There are many community resources to help those of us "sandwiched" between elderly parents and our own families. Sifting through it all can take as much energy and can be as stressful as providing the actual care. But don't give up. I'll help you find the right specialist. Meanwhile, it's important to remember: you're not alone.


-- Anne Marie Gattari -- am.gattari@brightstarcare.com

When Life Changes

My life changed in October 2009 with an early morning phone call from my sister, Barbara: "Mom fell down the basement stairs. She broke her leg and is in the hospital waiting for surgery."

Mom had just turned 87, and Dad, 89, was following her down the stairs. They were going to turn off the outdoor water spigot.

Until that call, I was a relatively "big deal" at Ford Motor Company, a public relations manager responsible for promoting the company's flagship vehicle line -- F-Series trucks. That afternoon, I had a flight to San Antonio where our new Raptor was competing for a prestigious award. I was responsible for planning a major media drive event in Arizona for the upcoming launch of the 2011 Super Duty. I had interviews scheduled between engineers and national business journalists. I loved my work. With two independent and responsible teenage girls and a retired husband, I could -- and did -- throw myself into my job.

That morning, as I turned my car around on I-94 in Dearborn and headed to the Henry Ford-Macomb Hospital in Clinton Township, I recalculated my day, making minor adjustments so I could still fit it all in. I didn't know it then, but those minor adjustments were just the beginning. Within the next two years, everything about my worklife, including what I value and how I identify myself, would shift.

It culminated in a recent retirement party from my media and Ford friends with a beautiful send-off into my new life. This summer I will open BrightStar Macomb, providing in-home care to seniors so they can remain in their homes and maintain their independence as they reach the end of their lives.

Macomb County has the fastest aging population in the tri-county area, with 14 percent of the people who live here aged 65 or older. Like my parents, many have some form of mobility, sensory, cognitive and self-care limitations. In short, they need help.

After her fall, Mom had leg surgery and a heart attack. She was moved from the hospital, to a rehab facility to home, back to the hospital and a second rehab center stay. When she finally came home for good nearly two months later, she was learning how to walk without bearing weight on her broken leg. She was being treated for severe congestive heart failure (her ejection fraction now stood at 10 to 15 percent) and she was displaying some pretty worrisome signs of dementia.

A month later, January 2010, we called Season's Hospice and Palliative Care.

With no preparation, no training, no idea of what we were in for, my sisters (Rita, Barb, Theresa) and I became caregivers. We spent nights at their home. We missed work. We called on our own children and spouses to help fill in. We bathed and dressed our mother. We cooked for her, washed her clothes, urged her to take her meds. We listened and watched in silent sadness as she seemed to slip away.

We gave explicit instructions to our out-of-town siblings who came for brief stints, to give us a break -- and to say goodbye to Mom. We called anywhere and everywhere for help. The Macomb office of the Area Agency on Aging 1-B offered excellent advice and referral information.

This story takes many twists and turns as Mom is eventually dismissed from hospice and Dad is admitted. I will continue to tell the story in regular blogs here in the Macomb Daily. Meanwhile, please share your stories. I know there are many, many of us out there going through the same thing.

-- Anne Marie Gattari -- am.gattari@brightstarcare.com