By Julie Beaulieu
There’s a saying that no one knows what your life is like until he/she has walked a mile in your shoes. With that said, I decided to share my own personal journey through the darkness of memory loss, brain disease and mental illness with my viewers.
Currently, I am care giver to two adult family members, my mother and also my maternal grandmother. I was raised as an only child, growing up with a schizophrenic mother, and a father who suffered from post traumatic stress disorder (PTSD) resulting from his experiences in the Vietnam War. I have an older half sister from my father’s first marriage who grew up in a different household. I’m also the only grandchild of Polish immigrants.
Although my mother sought treatment in her thirties for depression, she was misdiagnosed. At age 40, she suffered a psychotic break and was first hospitalized. I was in high school. Frightened and ashamed, I did my best to hide her illness from my friends.
While in college, I received a call from my mother’s job stating that she had been sent to the emergency room. What I recall most from that psychiatric hospitalization was my grandfather saying, “I hope I die before I see her go into the hospital again.” His wish came true. My grandfather passed away from heart disease in the fall of 1992. I share this point in order for my readers to realize the extreme pain and devastation these illnesses bring not only to an individual, but to the entire family.
In 2007, my mother had several hospitalizations which consumed six months of her life out of that year. I knew that something needed to be done to keep her on her medication while she was at home, so I sought a Community Roger’s Order and Medical Guardianship of her.
That same year, my grandmother, age 83, had a fall which required her to have hand surgery. This all took place during November while my mother had a long term hospitalization at Providence Behavioral Hospital.
The orthopedic surgeon and I decided it would be best if my grandmother spent one night in the hospital. I called her that night in her hospital room to say good night and wish her well. The next morning, to my surprise, she was not able to return home. When I arrived at Holyoke Medical Center, she had gone into a complete state of psychosis and delirium. It took the doctors one week to diagnose her with vascular dementia and I was contacted by a social worker to find nursing home placement for her. All the while, my mother was still on the psychiatric unit at Providence. The best word to describe my emotion and state of mind during this time is bereft. My grandmother had been the rock of the family, my caregiver. The one person in the world whom I knew loved me unconditionally. Would she ever come out of this demented state? Would she be placed in a nursing home for the remainder of her life? Would she ever again be the grandmother who knew and loved me so well? I cried every day for over a month.
During my time as a reporter, I have covered some difficult, sad topics. I never have cried on a shoot, or during an interview, but I have cried while watching some of the video afterwards. I believe one of my most wonderful gifts as a reporter is my ability to empathize. Recently, while completing my story on Alzheimer’s, Dementia and Faith, which aired on June 28, 2014, I cried while watching Donald.
Donald, who is probably in his 80’s, is so grief stricken by his wife’s illness and loss of his life partner, that he confesses on camera, there are times when he wishes he were dead. I too, have suffered a tremendous loss similar to his. To watch the pieces of who your loved one used to be slowly disappear day after day is heart-wrenching and devastating. It’s a grieving process that seems to have no end. The only end is death, which only starts another grieving process.
Donald’s wife is a resident of Mt. St. Vincent’s Continuing Care Facility. Due to her advanced stage of dementia, she believes she is in her early 20’s, prior to when she had met Donald. Because she doesn’t recall getting married, she doesn’t believe that Donald is her husband. Nearly 60 years of her life have been completely erased from her memory.
Charlie, also featured in my story, is age 85 and has an apartment in the independent living unit at Loomis Lakeside at Reeds Landing in Springfield. Because this facility allows its residents to add on services of, “assisted living,” and also has a unit of, “skilled nursing,” Charlie was able to stay in the same building as his wife Dottie when she developed dementia. He felt that this living arrangement made a world of difference in their lives as the disease progressed and changes occurred.
“I could walk over and see her without ever needing to go outside,” said Charlie.
Charlie shared that watching her physical and mental decline was difficult, but that she did remain active and always kept her spirits up. Dottie was a skier, camper, golfer and avid tennis player. She also was head of merchandise and did all window dressing and displays for their family run business, Johnson’s bookstore. While living on the skilled nursing unit, Dottie’s creativity was able to shine through as she decorated for the different seasons and holidays. In 2006, Dottie passed away from physical complications. Her dementia never progressed into an advanced state.
Dementia effects people from all walks of life. Who it effects has little to do with race, ethnicity, gender, sexual identity, socioeconomic class nor level of education.
Doreatha Allen, also in her mid-eighties, is an African American woman suffering from mid stage dementia, who is still able to remain living in her home, thanks to her daughter.
“One of the things we had discussed was that she wanted to remain in her home. So, I’m trying to honor that and am going to honor that as long as I can,” said Joy Danita Allen, Doreatha’s daughter and caregiver.
Joy Danita Allen is a Lady of St. Peter Claver at St. Michael’s Cathedral Parish. In July, Joy, along with the Ladies’ Auxilary, sponsored and organized the first Purple Mass and attended with her 84 year old mother, Doretha, also a member of the Ladies Auxiliary. The Purple Mass was in support and recognition of those suffering from Alzheimer’s disease and other forms of dementia.
For many, entering a skilled nursing facility (nursing home) is not a choice, but a necessity for the health and safety of an individual. Your loved one may say, “Don’t ever put me into a nursing home.” Keep in mind that people don’t put other people into nursing homes, circumstances do.
For five years after her dementia diagnosis, my grandmother was able to remain in her apartment in elderly housing with the aid of outside services and an adult day health program. She fought tooth and nail each time a service was added, but eventually came around. She had three short term rehabilitation stays in local skilled nursing facilities. After each stay, my uncle and I would switch nights and sleep over her house with her until she was able to spend the night alone. I did her grocery shopping, picked up her medication, took her to all doctor appointments, came to her apartment when she didn’t let the aid in, or refused to go to her day program. I did it all for love.
None-the-less, the time came in August 2012 when my grandmother needed 24/7 care — care in which our family could not provide. The only person retired and available to care for my grandmother was my mother, who is schizophrenic and now had Alzheimer’s onset. Facing this fact was heartbreaking for the whole family. For the first two months, each time we visited Anna (my grandmother) she would stand up and say, “Did you come to take me home?”
I, as Anna’s health care proxy, had to decide which facility she would now live in. I used the 90 days I had to make a decision. Her son and I felt it best to keep her at the Geriatric Authority of Holyoke. I then had these 90 days to clear out her apartment in which she had lived for over 25 years. It was 90 days until she was considered a resident and the insurance started paying for long term care.
For one month, I did nothing but water the plants and pick up the mail. Then, I began packing and sorting. Some close friends of mine would come and help me pack and load up the car with boxes. Often times, when they left and I was alone, I would cry. Moving day came in December of 2012. My uncle, father, and boyfriend all helped. Her whole life’s belongings had been in that little, two room apartment. If that wasn’t depressing enough, now it had to be downsized to only half a room.
Since that time, Anna had hemorrhaging and was diagnosed with stage 2 endometrial cancer. I had to decide on emergency surgery. I then had to decide on a treatment plan. This heavy burden caused me to tremble with fear and hide in bed, weeping, and wondering, “Did I do the right thing?” Soon I learned to trust my faith, because faith and fear can not exist together. Her life is not in my hands. It is in the hands of God. Only then did I feel this heavy burden lighten.
My grandmother, Anna, found a new home when the Geriatric Authority closed this past spring. She also survived surgery and was able to complete 5 rounds of radiation.
Perhaps, the greatest blessing of all was the birth of my daughter in October 2013. Viola Anna has brought incredible joy and hope to my whole family. She has had a miraculous influence on both Anna and my mother Irene in regards to their dementia, for they are very present and active when she is around. What I’ve learned from this journey is that God truly does work in mysterious ways, and that prayers never go unanswered.
To read Julie’s story on the Purple Mass and Alzheimer’s for iobserve or watch her reporting for Real to Reel click on the links below.