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Caregivers share their stories

Love and laughter sustains us

My father called, asking for me to come to Florida from Ohio, to help with my mother, who was in the hospital. I arrived the next day, and after two weeks, a decision had to be made: move back to Ohio, or stay in Florida. I have been here for four years. I did not think I would be the one in our family for the job, but being single, and an artist, I could work anywhere, so it made sense. My father, who became much more relaxed and happy when I arrived, died within a year. My mother lived for another six months.

Remember that your parents are set in their ways. If it is not going to hurt anything, let them go ahead and do it their way.

Go places. We would go out to dinner every night. Being around other people helped both of us. I set up a weekly hairdressing appointment and she had her nails done as well as a pedicure. I showed a picture to the hairdresser of when my mom's hair was blond and the hairdresser took her back to that color, to that time in her life. My mom felt special, she knew she looked good.

I always took her to some friends' house for appetizers and a gin and tonic. Because of medication, we left out the gin, just rubbing a little around the glass, but it was enough for her to enjoy her drink.

Laugh, joke, think about things she did for you as a child, her sayings: "Good night, don't let the bedbugs bite!" She always laughed when I said that to her before she would go to bed.

Tape your mouth shut when around your brothers and sisters. Count to 10 and wait 24 hours. They mean well. Always say "I love you" to your whole family. This is a major change in your life — you will need them later.

And if you know a caregiver, offer your help. Maybe once a week see if you can sit while they go out to a movie or dinner. Insist. If they get stubborn and say no, take over a dinner, even fast food, and have a little party.

Richard Seidel, 61, Clearwater Beach

Indeed, many share the challenges

After a lot of soul-searching, I moved my parents (struggling with dementia and Parkinson's) and my aunt to Tampa to a continuing-care facility near my home. I hired a caregiver to help with doctors' appointments, haircuts and just to be an extra pair of eyes.

The hardest thing for me? I kept trying to impose my wants, but what I thought was important to their quality of life was no longer relevant to them. In the end, my goal was to make sure they were cared for, comfortable and clean.

Both my parents have passed on and my aunt is now living on the floor for residents with dementia.

I know I am not alone. Lots of my friends have or are facing this challenge. I hope everyone finds peace.

Kathy Edwards, 64, Tampa

A place in your heart — and your home

I began caregiving about 16 years ago with my father, who had Alzheimer's. After he passed away, my mother moved to the east coast and I drove weekly to see her as she was showing signs of Alzheimer's. We moved her back to Tampa, purchased property in Land O'Lakes and built a home with a separate mother-in-law suite. Little did I know that caregiving would turn into a full-time job, 24/7.

Although she keeps deteriorating, her physical health is exceptional. At 89, she takes only two prescription medications.

I turn 60 this year, which is around the time of onset of my father's Alzheimer's. I have the resolve to continue to take care of my mother and I hope that I can stay mentally healthy to do so.

I am so grateful that I've had the support of an understanding wife.

Richard Burgess, 59, Land O'Lakes

Necessity is the daughter of invention

I am blessed because I am a stay-at-home caregiver. I don't know how someone with a job and family manages. Mother and I moved into a two-bedroom townhouse. I set up my own complete living room in the master bedroom upstairs, giving me the ability to "go home." This has helped to keep the stress level down for both of us. I also converted the dining room into her bedroom so Mom, 87, has her own little home downstairs with her living room and bedroom.

This created some serious safety issues. So I put in a baby monitor. I also got some inexpensive portable doorbell chimes with multiple buttons and put a button in her bathroom downstairs, at her bedside, on the table beside her recliner, in the kitchen, and I also attached one to her walker. She can get my attention no matter where she is — even if I am napping. I also purchased a pair of walkie-talkies and I can answer her rather than needing to go downstairs — I make enough trips up and down the stairs already; any step saved is a blessing.

Jannis Lynne, St. Petersburg

Love bound by three generations

I cared for my mother, who died of cancer in November. She lived with us — my husband and boys now ages 8 and 11.

There are so many facets to caregiving: love, support, feedings, medications, dealing with doctors and surgeries, hospitals, other family members, fears, decisions — and at the same time being there for the rest of my family.

My mother had a controversial 12-hour surgery for oral cancer that took her tongue, jaw and ability to swallow. It was unlike the other surgeries, when I had been able to bring her home and care for her. So every day I got up and got my family ready, then made the trip to Tampa for a day of dealing with doctors and nurses and procedures.

She was my best friend, and as hard as it was for me, and as disfiguring to her, we had always been together and this came naturally to me.

When she could no longer speak she wrote volumes of notes to me, which now will remind me forever of our journey.

Connie DeVoe, 41, Clearwater

Caregivers share their stories 08/24/11 [Last modified: Wednesday, August 24, 2011 8:30am]
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