Caregiving.........the stresses. the tolls, and the rewards!

My family. From clockwise........my oldest brother Tim, my cousin Mike, my mom's uncle Carl and his wife Dot, my Aunt Em and her daughter Karen with her daughter (Karen is my other cousin), me, my other brother Scott, my mom and of course Grandma in the chair.

When I was in my early 20's and still living home with my mom, she took in her mother to care for her on a full time basis. Hazel, my grandmother, had dementia, several TIA's, mild MS and was quite a handful. By the time I was old enough to have a mature relationship with my grandmother, she had already progressed into the disease of alzheimers and dementia. When both my grandparents were still living in their old large home, they had regressed to the point where they could no longer take care of such a large home, not to mention getting up and down the stairs so my mother, who is a RN, arranged for them to move into an apartment in Spring Lake NJ with a full time live-in caregiver. Not long after that, my STUBBORN grandfather Les, fell and broke his hip which led to his demise. So my mother had the option of placing her mother in a nursing home or taking her home with us. We had since moved into their large home in Wall Township, NJ.  She chose the later.

I helped daily with the care of my grandmother and let me tell you it was not easy. Now I knew what "stress" was because before this, my oldest brother and I managed a small convenience store for 3 years and because we could find reliable help, we basically ran the store ourselves which led to burnout. I quit after 3 years and went into teaching aerobics and personal training to which I truly enjoyed.

On one of my outings with Grandma. I had to take her picture. She looked so happy.

Taking care of Hazel was stressful. She was frequently non-compliant, combative, agitated, and had full blown "sundowners". She once burned the coffee maker to the stove! She had to be watched and sometimes sedated 24 hrs. a day. To mitigate our stress, my mother and I frequently took Hazel out and about on shopping trips and vacations. But again this did not come without stress. She was incontinent and we made her wear diapers, but she hated them and would constantly take them off and wet and soil her pants making our job so much more difficult. She constantly complained that it was either too hot or too cold, too dark or too bright, she would not eat her food or she would pretend like she was eating her food, but then would spit it out into a napkin and throw it away or she would give her food to the dog.

One time when I was watching her, my mother asked me to pick up a VCR that was being repaired and I strapped her into the car and locked it, leaving the windows down a bit and I said to her, "Grandma, I will be right back. I am just running in to pick up a VCR". She said to me "Ok". Within only 3 minutes, she managed to get unstrapped, unlocked and out of that car and she walked into a doctors office to use their bathroom to which she then flushed her diaper down the toilet causing it to overflow. So this was just one of many incidents that were incredibly stressful. The worst part of all of it was when strangers would give condescending looks of disapproval or make unsolicited comments in judgment about our sometimes impatience with her as her caregivers. Until one has been a caregiver and has gone through the everyday stresses and strains of this work, no one has the right to judge. You must walk in the caregiver's shoes to understand.

Grandma and me at Longwood Gardens. She never knew my name.

Now there were rewarding times such as this  picture to the left. This was one of our daily outings with Grandma. We took her to Longwood Gardens and she enjoyed that day. We took her to the boardwalk and the beach, especially Cape May and we took her on many road trips, staying in hotels and "honeymoon" suits. We drove the Blue Ridge Parkway and went to Grandfather mountain in North Carolina. We took her to upstate NY and stayed at the Mirror Lake Inn. We took her up to Vermont and visited Stowe and Killington and we took her to Great Adventure Park in Jackson NJ. She rode the Parachuters Perch with me. So we had many fond memories, but through the years of taking care of her, the stress took its toll on my relationship with my mother. We had a falling out and I moved out and to this day, my mother and I do not speak much.

My mom, me, and Grandma in Williamsburg, VA. We were visiting the college of William and Mary. This was taken at the zoo. We visited zoos often because Grandma loved looking at the animals. This is when my mom and I were really close and had a great relationship. She basically was my best friend but that has all changed now which I am saddened by but you have to deal with the cards that God gives you and find His purpose in the pain.

In the end we all have to live with the choices we make on a daily basis, knowing that as long as we do our best, even though it will never be perfect, it should be enough to make a difference.