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Home > Interpreter Magazine > Archives > 2014 Archives > May-June 2014 > Caring church eases difficult journey

John Hillery, who has been diagnosed with Lewy Body Dementia, examines a friend’s professional camera gear. Hillery was a wire service photographer throughout his career.
John Hillery, who has been diagnosed with Lewy Body Dementia, examines a friend’s professional camera gear. Hillery was a wire service photographer throughout his career.
JOHN R. FULTON JR

Caring church eases difficult journey

Among the many other things we have learned is that the vision of those who called themselves Methodists created a legacy of caregiving with an unending reach.

By Maggie Hillery

For three years, I have watched my husband struggle to hold on to normalcy.

At 66, he no longer can do routine tasks, and a wheelchair is his mobility. He no longer lives in our house because I cannot care for him.

In July 2013, we finally learned the name of this monster that has taken hold of him: Lewy Body Dementia.

Among the many other things we have learned is that the vision of those who called themselves Methodists created a legacy of caregiving with an unending reach.

My husband grew up in a Methodist church. We married when we were in our 50s and settled in southern Indiana. John was a news photographer who had regularly covered professional sports in Detroit.

We attended the church where I was a member and where my family had deep ties until a wintry Sunday morning limited our travels, sending us to Hanover (Ind.) United Methodist Church.

We entered late, but several people greeted us and invited us to sit with them. We felt welcomed and comfortable. The sermon was inspiring. We soon were active members.

In spring 2011, I became news editor of United Methodist News Service. I went to Nashville, Tenn., each Monday and returned home on Friday evening while John and I prepared to relocate.

The first signs of John's illness became apparent about this time. As a teenager, John had two major seizures and began taking anti-seizure medication, which he continued to take throughout his life. But what was happening now was different. He seemed unable to keep up with routine tasks. One Friday evening in late summer, I returned home to find him fully dressed and asleep in bed. I could not get him to respond. I was about to call 911 when he awakened, totally confused.

His doctor searched for a cause but could not find an answer.

Life went normally for several weeks.

In October 2011, John awakened one Saturday confused and feverish. The doctor on call at his neurologist's office said to take him to an emergency room. When I questioned where because of the complexity of his case, the doctor said, "Take him to Methodist."

Even the most ordinary of tasks — such as putting on shoes — can become a challenge for dementia patients.
Even the most ordinary of tasks – such as putting on shoes – can become a challenge for dementia patients.
JOHN R. FULTON JR.

Hoosiers know the ER at Methodist Hospital in Indianapolis has a reputation for amazing medical care. As you walk in the door, you see those words so familiar to United Methodists, urging us to do all the good we can as often as we can for as many people as we can.

By the time we arrived at the hospital, about 100 miles from our home, I was driving with one hand and holding down the power door locks with the other. John had been trying to get out of the car on the interstate. The ER staff rushed him to a room. About 30 minutes later, two doctors told me John was having non-convulsive seizures and he had an infection. They admitted him.

Five days and multiple tests later, John was discharged with additional anti-seizure medications and antibiotics. One doctor shared his concern that John appeared to have dementia, but the treatment remained focused on seizures.

The moment John entered the hospital, our church was there. In addition to the Stephen Ministry, through prayers, cards and phone calls, the offers of help came.

The months passed. Some days, John seemed like the old John. Other days, he barely functioned. The man who spent years enjoying his beloved BMW bike and teaching motorcycle safety no longer drove. The man who pored over professional sports stats to anticipate where to position himself for the best photos could not dial his cell phone. It was heartbreaking, but his doctors still puzzled.

One July day in 2013, John awakened and announced he had to go to Detroit. He started walking down the street.

By the time I locked the house and got in the car, John was several blocks away. When I found him, he was tiring and walking unsteadily. Two hours later, we were back in the ER at Methodist Hospital. Ten days later, the diagnosis came, but that knowledge brought another problem as challenging as the disease itself. Again, the name on the door that opened for us was United Methodist.

Like me at the time, most people have never heard of Lewy Body Dementia. What I discovered explained so much and terrified me even more.

Many different kinds of dementia exist. Alzheimer's, the most commonly known, is one. While only an autopsy can confirm Lewy Body Dementia, neurologists and gerontologists can identify characteristics that point to Lewy Body. The disease can appear to come and go, as it had with John, and sometimes strikes at a much earlier age than other dementias.

When John was discharged from Methodist Hospital in August 2013, his doctor explained the situation to me, painting a grim but realistic picture of what to expect.

After a stay in a respite care center, John returned home, but in October 2013, he had a major seizure. His doctor encouraged me to find a care facility near our home because John now needed more help than I could give.

The first home was not a good fit for John's condition at that time, which included needing space to roam. A week and a half into a second home, he refused to take any meds, including his anti-seizure meds, and he was transferred to a psychiatric hospital.

As I watched John decline in the psychiatric hospital, I struggled with where he should go when discharged. He was now in a wheelchair and very unsteady when he tried to walk. His health seemed so fragile that the 100 miles between our house and his doctors was enormous if an emergency came up.

A few weeks before, United Methodist News Service had published a story that included information about a retirement home founded by the Rocky Mountain Conference. Recalling that story made me think of the Franklin United Methodist Community, about 15 miles south of Indianapolis. On a Saturday night, after visiting John at the hospital, I went to the Franklin home.

I arrived at 7 p.m., but the woman at the desk answered my questions as if it were 10 a.m. on a weekday. The community had three dementia units.

Early the next week, I was at the home filling out an application and looking at the advanced dementia unit with its inviting open space under a skylight.

There was an opening and John was accepted.

The home has been a blessing for John and for me. While it is painful to see how the various forms of dementia have impaired patients, it is so gratifying to watch the staff of caring professionals focus on putting as much quality as possible into each patient's day.

I know my time with John is limited as this disease progresses rapidly, but I take comfort because he is so well cared for.

I am grateful for the love and sweat that goes into ensuring the ministries of The United Methodist Church continue. The hands of God truly are at work.

Maggie Hillery, former news editor at United Methodist Communications, lives in Madison, Ind., and is a member of Hanover United Methodist Church.

Dementia worldwide a growing challenge

Longer life is bringing challenges that were not anticipated a quarter century ago, perhaps even a decade ago.

Alzheimer's Disease International estimated in 2013 that there were 44.4 million people worldwide with some form of dementia. That number is expected to grow to 75.6 million in 2030, and 135.5 million in 2050. The association reports that the total worldwide costs associated with dementia care were US$604 billion in 2010. Seventy percent of those costs were in Europe and North America.





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