Caregiver Story by Jeanne Meliori
Please note that this is a personal story submitted by an About.com reader.
I must open my story by telling you that I do not have any answers. Alzheimer's is a devastating disease that takes its toll on the patient as well as the caregiver. What I can do here is share my experience with you, in hope that you find some of your own answers.
I moved my mother down from Nashville, Georgia to Tallahassee, Florida when her husband passed away in 1996. Having cared for her husband at home through a lengthy illness, she was strung out on Ativan, a tranquilizer that kept her from functioning at any kind of reasonable level. She stayed with me for a couple of weeks until I could find her an apartment - on the other side of town from me. I was angry that she had so thoroughly intruded upon and disrupted my life (we had always had a difficult relationship) and that I was now responsible for caring for her. I was especially angry that she'd allowed herself to get addicted to tranquilizers and kept questioning why she couldn't just be strong. I was in denial.
In any event, I found her a place to live and got her moved in. She began showing up at my workplace unannounced, incessantly calling me on the phone, and generally driving me crazy. I had no idea at the time that she already had the beginning of Alzheimer's disease.
Within six months of her move to the apartment, she had to be admitted to the psychiatric ward. My mother has bipolar disorder, and throughout my life she has periodically been admitted to the hospital when she decompensated. After her hospitalization, she refused to return to the apartment. It was apparent that she couldn't live alone. I took a week off from work and found an assisted living facility and got her moved - again. After a couple of more trips through the revolving door of the psychiatric ward, she finally began to have a life of her own. The structure that the facility afforded, with its daily activities and routines, provided the stability that she needed. She blossomed for a time.
She met a man named Walter, or rather he found her, and they began a friendship, passing most of their days together. In January of 1998, my mother and Walter decided to leave the assisted living facility and venture out on their own. They rented an apartment together, and all went well for about six months. Then another psychiatric hospitalization. Looking back I understand that without structure, my mother was unable to cope. Living on her own with only Walter for company proved to be destructive to her.
At this time, I still didn't get that my mother had Alzheimer's disease. That came two years later, when in the summer of 2000 she was admitted for yet another psychiatric hospitalization - this time for five weeks. When she came home, we had to hire help to come in five days a week to attend to her daily living needs. Since I have to work, there was no other alternative. This situation didn't work out at all. She couldn't stand one of the women I'd hired, and, frankly, neither could Walter or I. So they got the boot. I turned to a senior help service that provided someone to come in and cook and clean. But the young woman couldn't cook. We tried meals on wheels. They hated that. I couldn't do anything right. And I was angry all of the time. I still didn't accept that my mother was declining in spite of all of the evidence to the contrary.
In April of 2001, Walter insisted that I scout out a new apartment for them. There had been problems with the sewerage system where they lived, and twice raw sewage had backed up into the toilets and tubs, overflowing and running into the bedrooms and down the hall. Even though I reported the apartment complex to the health department, the apartment owners refused to correct the problem. It was only a matter of time until this happened again.
At this point, Walter's health had deteriorated to the point that he could no longer walk and relied on a scooter for transportation. His eyesight was also failing and he could no longer drive. I knew moving my mother to another apartment would throw her and that she probably wouldn't adjust, but neither one of them would hear of returning to an assisted living facility. So off we went in search of an apartment. We found a nice one in an area with other seniors, with a grocery store a block away. My mother wouldn't drive anymore, so Walter would go to the store on his scooter and bring back groceries each day. What cooking was done, he did. These daily activities - the trips to the store, the cooking - kept him going.
I went over once a week to visit and to take them out to dinner - what a motley crew. My mother in her muu muu poking along with her walker, Walter on his scooter, and me. People would stare. I was now taking her to all of her doctor's visits - and there were a million of them. Walter would call a transport service for his appointments, the few that there were. He was fiercely independent.