Caregiver Wisdom

Sculpting: An Expression of My Experience with Alzheimer’s

Art has fascinated me since childhood, but it was only later in adulthood that art became important as a personal form of expression. I discovered I could sculpt about the same time we discovered my husband, Don, had Alzheimer’s. Sculpting then, for me, became both an escape from his illness and a connection to him. Art, always our strong common bond, became, even in his illness, a welcoming doorway for us both into a wider world of art. It became a way to experience some moments of joy even as we plummeted, tethered together, into the black vortex of his disease.

The Love of My Life

My story started in 2005 when I lost all feeling below my armpits. . . . They believe I threw a blood clot to my spine because of something in my clotting system.

My husband became my caregiver.

I was in the hospital and rehab for six months. While in rehab he went to classes to learn how to take care of me totally. He is wonderful man and over the last 10 years has dedicated himself to me.

On to LIVING more tomorrows

2015 was a tumultuous year for our family. I had retired from my job as an RN the previous fall, had spent a delightful winter in the south (as Wisconsin winters were no longer welcome to our bodies or souls!) and returned to our home to be caregivers to our house and gardens. This was going to be a long awaited dream retirement until July.

Sometimes we can even find friends or neighbors that have the same in common

When our caregiving journey first began, it was pleasant and pretty cool. Started commuting from my apartment visiting both of my folks helping with bringing dinner, doing laundry, etc. One day at work, got a phone call saying my mom needed emergency surgery and eventually ended up having to leave work permanently. Her health condition declined off and on from then on for several years.

A passionate advocate for family caregivers

I became a caregiver when my husband was diagnosed with Parkinson's disease (PD) in 1999. We had no idea what to expect. We were both working full-time with a son in elementary school. The first few years were pretty easy with no progression and few obvious symptoms. After his father passed away in 2001, the progression began. Part of PD is REM sleep behavior disorder (RBD), which is a sleep issue that causes the Person With Parkinson’s (PWP) to act out their nightmares. It’s accompanied by yelling, cursing, thrashing, punching, and any number of other disturbing behaviors.

My Caregiving Story: A Granddaughter’s Experience

February 13, 2015 marked the one year anniversary of my grandfather passing away. I am 32 years old, and I cared for him for approximately three years along with other family and VNA services. My husband and I bought his house and moved in with him and his dog for what we thought would be a stress free situation. My husband and I had only been married for one year, and also started a family during this time. My grandfather was an easy going, appreciative 92 year old man who was legally blind and had limited mobility.

Caregiver training could have saved his life

I believe that anyone that is a family caregiver, should be properly trained. My husband was diagnosed with stage 4 cancer and after fighting for two years, he received a bone marrow transplant. He was put up in a hotel suite for recovery. Well, on Easter when I walked into the hotel suite, I noticed that my husband was sweating quite a bit. Had me and his brother had the proper medical training we would have known that his blood pressure was high and that he was on the break of having a heart attack way before he had one. I believe that the proper training could have saved his life.

My occupation is ‘caregiver’; my identity is ‘son’

At 89, my dad was a stubborn force of nature. He had been taking care of my mother at home for some 14 years. Mom was also 89, had been Dad’s wife for 66 years, and she was in the late stages of Alzheimer’s disease.

In the early years, my father was completely on his own: driving, shopping, cooking, managing the household, and providing intimate, hands-on care for Mom.

Caregiving 101

In 1996, my mother required emergency surgery for a brain aneurysm. She was 69. Three days later, my 77-year-old father had a massive stroke. As a family, we began a 15 year journey on a path with few road signs and an upside-down map.

I feel like a person on a bungee cord

February 15, my mother, 93 years old had the second stroke of her life, about 10 years after the first one. She was only hopsitalized for a few days, but then went into rehab for over 30 days which we both thought did very little if any good. When she came home, she came needing 24 hour companionship and care. It was suggested that we move her to assistedt living which is most costly and she owns her own home.

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