|"A Walk On The Beach"|
By Sue Higgins
Acrylic on canvas
Words that cut me down to my core in a way that only siblings could do. I was being discredited. Their dissatisfaction with how I was helping mom, was like rocket fuel for my will; I didn't quit. Ma was feeling better. She was having lots of good days too! I chose to get bigger than the problem and found the strength to keep up the good fight.
I was onto something big with the results I was seeing with Ma and no one seemed to care or want to hear me. Just like when I was 5, I was being ignored. My siblings often looked down on me throughout my life; I was considered weak because I cried easily. My entire life up until now was spent trying to prove myself to my older siblings. For reasons I still can't explain, I had felt I needed the approval of my sisters and brother. It was quite a Eureka moment for me when I realized we are now all adults and just because someone is older doesn't make them wiser than me.
Caring for my demented mother was difficult but I refused to give up on Mom, I couldn't, she was depending on me. Kneeling next to my father's casket in 1979, I made a promise to Ma, vowing to care for her when she was an old lady. Mom was 50 and I was a wild 19 year old.
After dad died, I lived my life and when the time came that I could afford to buy a house, I did and moved Ma in with me. In the beginning it was great, my brother Ed was still alive and my family seemed tight. Holiday's still meant something to my family, until Ed died suddenly in 2001. Ed's death rocked my families world. Little did I know how important he was to my family and how much he would be missed by me and my mom.
The stress I experienced caring for Ma was compounded by my expectations of my siblings. I expected support. I expected them to help me, after all, Mom was their mother too. I believed my dad's words, I took them literally, "your family will always be your true friends, stick together." I often wondered why my sisters and brother abandoned me when I needed them the most. Thank God for the Hospice counselor I spoke to, he later helped answer this question.
Caring for my mom would have been easier if I knew then what I know now. The one thing I would have done differently? Visited a psychologist to listen to me and offer advice on how to cope with the perceived loss of my family and impending death of my mother.
I didn't get help. I didn't even know where to begin to get the help I needed. I didn't use support groups, how on Earth was I going to go to one when I was caregiving 24 x 7, 365 day a year without a break? I was stuck on a hamster wheel, running 100 mph, exhausted and never getting anywhere.
Siblings, not willing to step into mom's demented world, left me alone. I felt as though they were trying to "break me" so that I would "just give it up" and put Mom in a home. The work I was doing with Ma became too important. It had become my new life work, food as medicine. Ma, she became a partner, excited to try new foods that I would prepare for better health. She wanted me to write about the alternative methods we were using instead of drugs. She saw how food and fenugreek cured her diabetes; she was excited. Ma wanted to help others so they didn't have to suffer like she had before we discovered the healing power of whole foods. On her good days, mom loved to cook with me.
I never did allow my spirit to be broken, my research with my mother was too important. Not just for my own health but my family too; we share the same genetics. My husband helped me cope. He was my voice of reason, telling me to "get bigger than the problem." With Brian's words of support and encouragement, I was able to tuck my emotions away and focus on the goal, giving my mom more good days than not so good days. I made this my job and I did it very well. Mom died peacefully and she had Lewy Bodies Dementia!
The perceived loss of my family was difficult, harder than losing my mother. I had years to prepare for my mother's demise, I had no warning about my family belief system imploding. It crashed and it crashed hard. When I realized my dad's words were his ideal, his wish for his family; to have us all stick together and help each other through the tough times, I was able to forgive everyone for abandoning me. It was a revelation for me when I realized what I was asking my siblings to do was beyond their abilities, their family role came with limitations.
Unfortunately, I took Dad's ideal family to be a fact and real. I embarked on the journey with my mom with the belief that I had a caring family who would stand by my mom and me, hey, it was what Dad wanted!
I found myself devastated. Lack of family support made it hard to cope with the day to day duties as Ma's caregiver. But, I got through it; like my dad used to tell me when I was a little girl and upset about something, "Susie, wait a minute. things will change, nothing lasts forever." These words of wisdom from my dad helped me to stay the course.
Hospice helped me put reality back into my expectations of my siblings. The bereavement councilor told me that in families, everyone has a role that makes a family what it is. During the time when a parent is sick and or dying, adult children will begin to revert back to how they behaved with one another when they were children. Family members who pass prematurely, leave a gap which shakes the foundation of ones family. Everyone in a family is important because together we make our immediate families whole.
Now, there's nothing I can do to bring back the folks in my family that have died in order to resurrect the family I was born into, but what I can do is take on a new role in the new family that is emerging in the wake of the death of the old family.
Today, I am Auntie Sue to the babies that have been born into my family. I play with the kids and teach them all the things I taught their parents when they were their ages. My heart is full again with love for my family. I accept all of them for who they are, limitations and all. I know that I can't fix their problems and they can't fix mine. All I can do is love my siblings and be grateful to have made it through caregiving for my mom alive. I can't imagine life without my family, especially my husband and the kids.