I recently finished reading and reviewing Alzheimer’s: Through My Mother’s Eyes, by Suzette Brown. I was so impressed with her story I immediately wanted to interview her. Suzette had so many great and interesting things to say it was necessary to break her interview up into two parts. Here is Part One:
I just finished reading your book, Alzheimer’s: Through My Mother’s Eyes and thought, “Wow, that’s one dedicated, strong woman. I don’t know if I could do the same if I were ever placed in that position. Can you tell readers where your inner-strength comes from?
I have always been a strong, honest and independent woman. Until I took care of Mom I had no idea the strength I actually did have would come forth. Mom depended on me. I was her voice. I had to be strong. As you could see reading my book there were many obstacles that had to be overcome. Being raised with a European and Canadian background has taught me self-worth, responsibility, consequences, confidence and respect for myself. Even as a teenager I was comfortable with myself and my choices. Good parenting, open communication within our family, combined with compassion and life lessons allowed me to become a strong woman. After my husband and I married in 1983, he finally got through to me that I didn’t have to “take crap from anyone”. He was also my guide and taught me that I can’t change people or what they do. Took awhile, but I finally “got it”.
I don’t play games with people, I don’t do drama, I don’t have to have someone around me all the time. I don’t need constant reassurance. I enjoy time alone. My strength is silent and my needs are few and simple. The guidance given to me as a child and young adult came full circle to adulthood. I was very protective of my mom and fiercely stood up for her. I was as strong for her as she was for me. The strength was with me the whole time I just had to dig deeply. Much credit goes to my husband of 30 years. My strength would have waned had it not been for him. I often asked him through the years, if he thought I was doing the right thing for Mom. He was also able to see my plight from an unemotional point of view. He knew my strength was there the whole time and had no doubt in my capabilities.
When and why did you decide to write a book about your experience?
When dad passed in 1999 I did not have any inkling as to the deterioration of Mom. As I described her decline, and we got all financial and medical documentation straight with the elder attorney, I bought a notebook and started documenting. So much happened. I received so many phone calls from concerned doctors, friends, neighbors and relatives who noticed a subtle change in Mom. I could no longer keep up with conversations verbally. I lost count of her phone calls and problems. I started journaling and documenting Mom’s decline – incessant phone calls, doctor appointments, insurance questions, etc. It started out as a necessity. I worked for a school system, in the department of School Social Workers. One of the social worker’s helped me out more than she will ever know. Her uncle was going through the exact same situation at 96 years of age.
In the beginning, I was unfamiliar with Adult Social Services, elder attorneys, geriatric doctors, neuropsychologists for testing, assisted living facilities, etc. This necessitated documentation. Before I knew it, I had doctor’s notes and letters, journals, names and addresses, medical issues, questions – you name it I had it all written down.
As more friends and family found out about Mom’s and my situation, they started asking me pertinent questions out of concern for their own family member. Is it Alzheimer’s? Who do I call? How do you take care of your mom and work? How do you take care of your son and his sports? By that time I could answer all their questions from the wealth of information I had learned. That’s when I started hearing from people, “You should write a book on taking care of your mom. I’ll buy it.”
Of course my growing pile of correspondence was huge by then. I put it all in a box and placed in our back room. By 2010 I’d ended up on disability after major knee surgery. I started thinking about writing. I thought maybe I had a gift, I had always enjoyed writing and I could type 95 wpm. It took many years and a lot of thought before I pulled out the box with all my paperwork. Too many memories. I set out to help other people who may find themselves in the same position. I wanted to let them know what it is REALLY like to be a caregiver – from someone who is ordinary. A regular life and full-time caregiver. I started writing in arnest in February of 2013 since I now did not work full-time and could devote my days to writing my story. Fast typing helped quite a bit – by summer it was submitted to my beta reader, Michelle. Then by the fall I found my publisher and the rest is my end result!
What was the most difficult thing about this experience?
This is not a hard question to answer. The constant bickering, arguing and fighting others who wondered what MY problem was: Why don’t I leave my mother alone? She is “FINE”. Don’t take away her driver’s license, that is the last she has left of her independence. I can’t believe you are putting her into an assisted living facility and taking her out of her home that she shared with your dad. What gives you the right to determine she has a problem? Why don’t you move in with your mother and take care of her 24/7? Why don’t you drive her to all appointments, that way she wouldn’t get into accidents? Maybe YOU are the one with the problem and not Mom.
My uncle used to tell me that from what he was hearing there wasn’t even anything wrong with his sister-in-law. He just wanted peace and harmony in his family. He didn’t (seem) to care about my fragile emotional state. Family harmony and everyone getting along was important to him. It was positively draining. It put undue pressure on Mom as well, and created bad feelings between myself and friends and family.
I offered several individuals (my retired, single uncle included) FULL reign of Mom’s care. Full DPOA (durable power of attorney) powers. I would step back and they were more than welcome to take over complete physical, emotional and mental duties. Her finances, her home, driving, appointments, phone calls, bills/invoices, scammers contacting her, her physical deterioration, her home and yard, everything… full time care giving. This included all of the emotional issues due to her disease – which she had virtually no control over: the barrage of phone calls, her getting lost and into accidents in the beginning, her rage and anger, screaming, loss of control, to only mention a few.
Not a single one wanted to follow their advice. Not a single person came forward to do a better job than I was doing. Not a single person came forward to even TRY to do a better job – especially the ones who thought my caregiver skills were lacking. I wished at the time they had. I was so bone tired! The only people I could turn to were my aunt and uncle in Florida and “W” who had been friends with my parents since I was born.
We didn’t hear too much about your husband and son in your book. How were they affected by your mother’s deteriorating condition and everything that came along with it?
I purposely left much of that information out of my book because I wanted to center on the caregiving aspect. I wanted readers to learn about the signs, symptoms and my experience with Alzheimer’s Disease. My husband and son were indeed instrumental in composing and completing my book.
My husband was more concerned with my condition as Mom’s caregiver. He told me that I aged 10 years in 2000. He saw how tired I was and how I got no support from the people I needed support from. Phone calls from those criticizing me made him furious. He was able to observe from an outsider’s point of view. He helped me tremendously with taking care of Mom. He was very concerned about her welfare. He kept warning me that she would only get worse, and that I had not seen the worst of it yet. He got tired of the excuses from one particular family member, who was never there to help me. He grew even more tired of the constant negativity that the situation created. He stayed tolerant only for my benefit.
On the day Mom passed, my son Bryan was 19 years old. I called him and told him that his Nan was about to leave this world and he needed to come say goodbye. He left work, rushed to the convalescent center to be by her side. He had watched for the 5 years as I was Mom’s caregiver. He used to tell me to stop answering the phone, that Nan was driving me crazy. He was 14 when his Opa died and not quite old enough yet to fully understand Mom’s condition. He was very sweet most of the time. He helped me with household chores as did his Dad. Both of them chipped in on the “mom” chores – I never would have gotten them all done had it not been for the two of them.
It was an emotional nightmare for the two of them…..but they loved me and did whatever they could to help me out.
I was particularly incensed by the attitude and downright devious behavior of some of the Assisted Living Facility (ALF) staff. While it might be understandable that staff can sometimes be stretched to their limits when caring for so many ailing patients, this is still their jobs after all. What are your thoughts?
Incensed is a great word…My thoughts are exactly the same as yours. According to the ALF, it was not my problem, it was their job. I didn’t want to piss them off to the point that they would ignore my mother or treat her badly due to my actions. The whole time I typed that section, one thought was in my mind, I wanted to NAME the ALF and the “doctor” who had delusions of grandeur. She had a definite “God” complex, she was rude and her behavior as a professional was unacceptable.
The ALF director (in my opinion) was spineless, otherwise my issues would have been taken care of. I was glad that I documented the employee’s actions, and what I was told regarding their policies. The cups of pills left in Mom’s room – I blew a gasket the second time I visited and it was sitting there, AGAIN. My impression was laziness and low pay added up to inefficient and poorly trained employees. Yet, they gladly took the extra Christmas funds that we, the caregivers, doled out.
If items in Mom’s room had kept disappearing, I indeed would have installed a camera. There were several possibilities that also included other residents.
I have never and will never suggest that particular ALF to anyone. If anyone asked which one it was, I told them the name and location of the facility. All of the information I documented was true and accurate.
I am NOT a person that accepts excuses. (Ask my son, he’ll confirm that!) If you are a miserable person and feel you do not like your job, or you don’t like working with the elderly, then quit the ALF and find something else. If the ALF is hiring merely to fill spaces with unqualified employees—then that needs to be addressed. My trust was in the nurses and staff – Mom’s well-being and safety depended on their care and training.
On the flip side, with regards to the director of the ALF, they should have followed up on my complaints. They should have checked into, and researched everything properly. My phone calls and requests should have been answered in a timely manner. Policies were in place due to the ALF being operated and maintained by a local hospital. They actually thought I would place Mom in the “Alzheimer’s Ward” on premises? That was laughable.
In retrospect, since this ALF was hospital-owned, I should have called hospital administration and reported the inept service, unprofessional attitudes, no explanations for any of my concerns, and the “hope” that I would just “forget” about the many problems that I brought to the attention of the staff and the ALF director. The only thing that stopped me from contacting administration at the hospital was the possibility of worse quality of care for my mom that could have been exhibited due to my complaining.
In Part Two, Suzette discusses a comforting paranormal experience, even more difficulties with family members and her passion for working with therapy dogs.