Oh my, putting Alzheimer’s and my Mother together was something that could only be pictured in a horror story. This nemesis, stripped my Mother of her dignity, her social graces and class, her memory, communication skills and loving spirit.
My parents were good people and upstanding citizens in York County, Virginia. We lived in Gloucester and at the time I didn’t have contact with either Mom or Dad on a daily basis. When we got together or visited each other – I would feel that something “wasn’t quite right” with Mom but I could not put my finger on it. She was with Dad most of the time and I chalked it up to maybe having a bad day or she was tired. Dad started making comments about Mom’s memory and believe me it did not go over well with Mom. He made no mention to me directly about his wife’s memory, but he was deeply concerned.
When I would visit my parent’s in their home, small items would surface. Mom panicked when she lost something or misplaced it. It was never found in the location it SHOULD have been in – but I figured that happens to everyone, right? One day Dad said outright he was concerned that Mom had beginning stages of Alzheimer’s Disease. He would find the butter dish in the freezer, his socks in the kitchen drawer, paperwork in his loft study was missing, and notes started piling up all over the living room. Trying to find out what was going on, Dad would just shake his head. He protected Mom – but in the long run, he did me no favors. I had no knowledge as to exactly HOW much Mom’s behavior and memory were deteriorating.
A hard day in April 1999. Dad passed away while my husband and I were out of town. This was a required event that his company held every year and of all the DAMN nights to not be home in the entire year, this is the night that Dad passed. I screamed as though my soul would leave for eternity. I had just spoken with him yesterday. Dad was a diabetic on bi-weekly kidney dialysis. I strongly feel that dealing with the stress of Mom’s issues contributed to his weakened body. I wish he had let me help. He died with quiet dignity never sharing the severity of Mom’s decline with me.
An elder attorney was FIRST on the list. Proper documents and paperwork had to be signed while Mom was still affable and mentally stable enough to realize exactly what she was signing. Her elder attorney was a remarkable woman, and would not complete the forms in order for me to become DPOA (Durable Power of Attorney) until she was completely satisfied of Mom’s mental status. Ok, good the documents are signed, notarized and filed with the York County Courts. I had no idea nor could I imagine what lay ahead.
Mom’s memory started to decline at a rapid rate. She was now alone in her home, no husband to keep her safe and protect her. She started calling me frantically constantly. Late at night, she was still up – and on many occasions woke up myself and my husband looking for her husband. What the HELL is going on with her? This was bizarre. Why is she calling my house at 2:00 a.m. looking for Dad?
This was merely the beginning of a five year journey being Mom’s caregiver. It was beyond any human endurance test that could be administered. I felt like slamming the phone into the wall on more than one occasion. The stress was simply unbelievable. I was confused, angry, and frustrated. What is happening to Mom? How much longer can I do this? OMG I need some help. What am I going to do?
Mom’s memory was not the only thing that I was concerned about however. She was not eating properly. Her house was dusty and dirty. The yard had grass over a foot high in the front and back. Mom’s neat appearance and pride in her dress – did not convey any more at all. There were literally hundreds of notes all over the living room, her desk, the kitchen counters and stairs. Mom’s personality had taken on a passenger that was clinging to her brain…..what has happened to my sweet and loving Mother? It was so very sad.
Businesses started calling me. Banks and credit unions called me. The doctor office and Mom’s friends called me. She was appearing at the credit union 6-7 times per day. Calling the doctor’s office over and over. When anyone would say anything to her or ask if she were alright her defensive mechanisms clicked in and at times, she was very rude to all concerned. OMG HER whole personality had changed ! She couldn’t remember anything about anything – and the calls increased in severity. Her friends started wondering what was wrong with her?
I’ll be honest and tell you I was having a very difficult time dealing with Mom. The phone started ringing as soon as I got home from work, until midnight. Mom calling, over and over. Now, she had started screaming at me – if I didn’t tell her what she wanted to hear. The DPOA had not yet been put into effect and explaining that to her was useless. I legally could do nothing to help her. She vowed that I would never have her money, her possessions. She would see to it. My childish response – I told her I didn’t want her money or possessions anyhow…..She was “fine” she proclaimed, she was alone without her husband. Maybe this was grief I wondered? Was I exaggerating her condition?
Finally someone contacted APS (Adult Protective Services) and I believe to this day it was her doctor. He was very very concerned about Mom. Doc would have her come every month or so and his notes reflect the decline in Mom’s memory. He scheduled her to be tested by a “neuropsychologist” at our local hospital. This test would confirm the diagnosis of Alzheimer’s. It is like being hit in the heart making it skip a beat. I can’t say I was surprised, I can say I was now able to associate her bizarre behavior with an explanation. Documented paperwork for Mom’s diagnosis included her physician, the APS officer, the Neuropsychologist, and a Psychiatrist. Mom was declared “unable to live alone and function” as an independent person. My DPOA was now in effect and Mom was moved to an Assisted Living Facility.
That was the worst year of my life. I thought that Mom would have to (literally) be removed from her home by the Sheriff’s Department. She fought hard trying to maintain her independence, her home, and her life. She continued to tell us all that she was FINE. She had charge of her home and bills. She didn’t need any help. How DARE these people interfere in her life. How DARE the APS officer show up her door.
Alzheimer’s to me – was a vile disease that stole my Mother. There was no explanation and no forewarning that this disease would strike my Mother. She did not deserve to have her memory and independence stripped from her. She was a wonderful and loving parent to myself and my sister. It tore me up to see her physical and mental condition deteriorate. Sadness seeped into my very being. There were many occasions when I would excuse myself for a minute telling Mom I had to use the restroom…..these precious minutes allowed me to shed tears that Mom could not witness. Why my Mom? Why had this disease “chosen” her? She clung to her belongings and her home as long as she could. She was determined to stay in her home and she did not understand anymore that she could not live alone. She ached for my Dad and was on the roads many a night looking for him as she did not remember that he had passed. Dad was there one day as usual and gone the next. I know that Mom never understood this – her mate and husband were suddenly not there for her. How did this echo in her mind? How was she able to comprehend that she was alone? She couldn’t. Alzheimer’s wouldn’t allow her. I silently watched as this disease devoured her. I was so angry at Alzheimer’s.
I was honored to be Mom’s caregiver. I was her voice, when she was unable to speak for herself. I fiercely protected her and ensured that she was safe, treated with dignity and respect. Her affairs were done daily, receipts kept and all paperwork/documentation/bills/invoices/taxes accounted for. I balanced her checkbook, paid for her care with her funds, got her OFF the road and turned in her driver’s license, I sold her home and put her profits in her account to pay for her living expenses, medical needs and bills. I questioned her caregivers, nurses, doctors and administrators when I felt her dignity was being misdirected by other’s.
Mom needed love and guidance. A smiling face, hugs and kisses. I would bring her fruit baskets, coffee and doughnuts – snacks and juice. We would put a blanket on the floor of her ALF room and have a picnic. She would go on walks with me and my German shepherd dog. We welcomed her in our home and enjoyed many dinners together. Holidays, birthdays, weekends – many sweet times with Mom. She would love driving around at Christmas looking at the holiday lights ! Friends would come visit her at the ALF, take her out to lunch or shopping. She loved all of it!
Mom was an incredible woman. It was tragic to watch her descent into Alzheimer’s. The only saving grace – I think anyhow – was Mom being unaware of the changes that her body endured. That in itself was a blessing.
After Mom passed, I remembered all those nights of voracious phone calls—back to back every night. You know, now it was silent and I really missed her voice.
I miss you Mom – love you
– Suzette Brown