A different kind of love story (Part 3)

As the months progressed, my father said he wanted to take my mother home.

He told the nurses of his goal. They told him that while Mom was still there, he would have to prove he could do what needed to be done to care for her.

That included getting her in and out of bed and into her wheelchair, administering her food via the feeding tube, taking care of her catheter, changing her adult diapers and keeping my mother clean.

Although I was doubtful my father could pull this off, he proved to the nurses he could care of his wife.

Mom was released to go home Aug. 1. She had a wheelchair. A hospital bed was set up in their living room. My father arranged to have an occupational therapist, a physical therapist and a nurse continue to work my mother’s body at home.

Routine and schedule are very important, even in the late stages of Parkinson’s disease.

My father would get my mother out of bed and up in her wheelchair for breakfast, lunch and dinner. Some days, she would be in her wheelchair most of the day. Other days, she rested in bed between meals.

One of the most difficult parts of taking care of a loved one with Parkinson’s disease is every day is different. One day, your loved one is talking to you. The next day, your loved one is unable to talk. It is very much like being on a roller coaster.

My family and I continued to visit Mom and Dad on weekends and holidays. We had some fun times, even though Mom was stuck in her wheelchair.

I remember Friday, June 9. In the afternoon, I was looking for some Keds tennis shoes for my daughter. She was performing in a special choral concert at Columbus North High School that evening.

I was parked by a Subway, and my father called. He told me that my mother had passed away right after breakfast that morning. A nurse was there at the time.

Mom had started choking on some cereal and had a heart attack. My father administered CPR while the nurse called 911.

I asked my father if anyone was with him. The pastor came and ended up staying with my father. I told my dad about Karen’s choral concert.

Dad said that Mom would want us to continue to attend the concert. I told Dad that we would be with him early Saturday morning to make arrangements to celebrate Mom’s life.

Parkinson’s disease is an unpredictable journey for the patient and caregiver, but people should not be afraid of a diagnosis.

Research is being done to bring about new treatments and implant surgery can prolong life. Caregivers need help and breaks. Other family members and friends can help.

Stages of Parkinson’s disease

1. Uncontrollable tremors or shaking, slowed movement, rigid muscles, impaired posture and balance, speech and voice changes, stooped posture, facial expressions change

2. Symptoms of Stage 1 felt on both sides of the body and have difficulty feeding oneself

3. Decrease in reflexes, loss of balance, moving slower, at risk for falling

4. Unable to live alone, caregiver needed, have to use walker, daily tasks are hard

5. Wheelchair, standing and walking alone impossible, hallucinations, delusions, 50 to 80% of those with Parkinson’s disease will experience dementia

Information and updates on Parkinson’s diseasde can be found online at michaeljfox.org, which is the Michael J. Fox Foundation for Parkinson’s Research website, and parkinson.org.

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