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The Parkinson's Disease Experience
My name is Michelle Wilson. In 2000, I returned from Venezuela, after 17 years overseas. My life was changing course drastically. I was married to a man who had been stricken with Parkinson's for many years. The tragedy of seeing my husband deteriorate and not respond to his illness in the expected way, made me "pretend" that things would work out in the long run for him and us as a family. We all had many years to look forward to, before his health would take a turn, right? I mean, he was in his early thirties, too young to let the disease take over his body or mind. We landed in Atlanta, in search of doctors at Emory University and medicines to alleviate and possibly cure this disease. The chemical imbalance that my husband experienced, possibly the effect of his drug therapy, had created all kinds of compulsive obsessive behaviors that wreaked havoc in our marriage, as symptoms of apathy, hypersexuality, pathological gambling and abuse of Parkinson drugs, played a prominent roll in our lives. I awoke one morning, to discover that my bank account was empty and I realized, that he had never attended gamblers anonymous, as he had promised. In another event, my neighbor confessed to me, that my husband had forced entry into her home, all while her spouse was away. Although she admitted that the affair had endured for a year, she wanted nothing to do with him anymore, having been frightened by his midnight intrusions. She was afraid of the consequences, if her husband found out. My hurt was hard to bear.
My husband admitted he had lost his job. I called the doctor's office, where the nurse explained that his behavior was often common among patients with PD, but could not offer a solution nor refer me to anyone for help. No one ever warned me of the consequences of this disease. I begged my priest to talk to him, and afterwards, to my astonishment, he actually told me that he would approve an annulment, before I could ask what I should do or what he had said in the confessional booth. Emotions were high and I felt like I was on a wild horse ride, that would not end well. Soon, our two sons would be off to college on scholarships. My sister and her husband answered my prayers and offered to take in my oldest son who was off to Georgia State and another wonderful friend took in my youngest son, who attended Kennesaw University. My mother-in-law bought her son a ticket back to Venezuela to see a psychiatrist and I hoped that I would have time to figure out what to do. Some days later, I received an email from an online gambling site, that he had spent $5000 at a cyber café in Venezuela, using his mother's credit card. I don't even understand how that email came to me. His mother promptly returned him to Atlanta, where he would disappear for days, only to return and repeat his leaves of absence, who knows where. I was done with being abandoned and emotionally abused. while most people would turn to their family for emotional support, he turned away. I loved Georgia but, I left with my daughter for Miami, to seek refuge with my mother. Sickness or no sickness, a wife cannot endure such torture and there was no one else to turn to, other than Mom. I was in survival mode. I didn't know how to help him. He said he felt nothing for his kids, so I suppose that included me. He had a wealthy family back in Venezuela, who could afford to take care of him and he lost his immigration status anyways. I could not call myself a good mother, if I let my children continue to witness his self destruction and I wasn't about to return to a country struggling with political upheaval, currency devaluation and food and drug scarcity. I was lost and broken-hearted.
Alzheimer's Disease and Diabetes
Arriving in Miami with my youngest daughter, we moved in with her and offered to help with the shopping and housekeeping. Mom was going thru her own kind of hell with my stepfather, Richard, who suffered from Alzheimer's Disease. Shaking from dangerous sugar lows, Mom had advanced diabetes. She was also constantly dealing with keeping the doors locked, in case Richard would wander away from home. One day a policewoman returned Richard to the house, with the threat that Mom would be jailed for spousal abuse, if he wasn't placed in a home soon. Is that even possible? It was time to place Richard in a Residential Care Home, nearby. It was hard for her to take that step, but she visited him daily, until he stopped recognizing her, and later passed away, in 2016. He was an electric engineer for Florida Power and Light for many years and a good husband to my mother. I remember him with much affection.
During this time, I was constantly trying to juggle my job, finish my degree and care for my daughter. It had been 20 years since I had lived in my country and I was starting out all over again. My husband refused to initiate the divorce, while he lived in Venezuela. I felt like a zombie, and like the song goes "trying to make a living and doing the best I can". It took another four years to recuperate, until November 2009. That's when I met my current husband, Ray, who proposed marriage to me, within a week of having met each other. He whisked me away to Utah. I was unrepentant; eager to start over. To this day, God blessed me with such a good man! No alcohol, no drug abuse; just a God fearing, family man, eager to love and be loved. There is no way to express Divine intervention in my life, other than to say that God has perfect timing. My children's father went on to remarry too. Fast forward, my three children have all married and hold professional positions. One as a pilot for FedEx, the other for the State Department and my youngest as an administrator of a prestigious hospital. You see, for a woman left to go it alone, there is always light at the end of the tunnel, where things could have gone south and desperation could have settled in, we all marched forward, relied on family, faith and resolve to not drown in our sorrows, but find purpose and happiness.
The heart attack
Then, in early 2012, Mom began to show symptoms of dementia. My single brother, who lived in Miami Beach, moved in with her and became the main caregiver. Mom was becoming hostile and dependent on my brother for transportation and daily living activities. She began receiving a myriad of caregivers, that he had contracted through an agency, while he went to work at Miami Airport. Luckily, my stepfather, Richard, had left enough money after his death, so Mom could be cared for by professionals. One day, in April 2018, out of the blue, our brother called my sister from the hospital, and out of breath, he managed to say he was collapsing from a heart attack. When my sister and I arrived two days later, our brother had gone into a coma for over 2 weeks. The doctors gave us little hope of his survival. The doctors wanted to pull the plug, while the social workers and case managers from the hospital sent us emails every few days, asking us to prepare for hospice, talk to a funeral home and pick out a burial suit from his closet! We were in shock that things were moving so fast. Mother continued to receive care and we'd visit our brother at the hospital every day, for almost two and a half weeks. To our dismay, his co-workers tried to get involved in our decisions, as he lay there, hooked up to tubes. We watched behind a curtain, while doctors shocked his heart with the defibrillator, several times a day. In the eyes of his coworkers, we were depicted as the two evil sisters, who married and left their parents behind, while the big brother took care of Mom and Richard. Not true. We each had been married for many years and had left the state long before our parents became afflicted with their diseases. We each had children to raise and even offered Mom to move in with us, but she refused to leave the house or our brother. My brother, on the other hand, never married and lived within 10 miles. We didn't see that as normal. He eventually moved in with Mom to keep an eye on the comings and goings of caregivers. Richard's daughter was a nurse, who lived a few blocks away and checked in on them periodically.
My older sister was asked to sign a consent form to allow our brother, either CPR or DNR, with the doctors leaning heavily towards DNR. That is how we perceived it. We decidedly shut down all communication with certain family members and our brother's co-workers, especially when their intervention became hostile. I thought to myself, wasn't this our decision to make and no one else's? In hindsight, maybe sharing the responsibility with others would have eased our conscience to allow CPR, but when the doctors described the broken ribs and the pain that goes with CPR in a hospital, even if it meant reviving his heart, the medic assured us, he would not be gentle. It was a hard decision to make, when my sister signed the DNR form, but hers only! I supported her for her compassion.
In the mean time, we moved our 95 year old Mom to a wonderful assisted living, just 3 blocks from home, one that was highly recommended by her doctor in Miami Springs. Until we could decide how we would transport Mom across the state to my sisters new home in Lake Martin, Alabama, Mom would stay in the assisted living. Mom was bedridden, not able to sit up. Could she make the journey? We couldn't forecast what the next 24 hours would turn out to be and lived day by day. At the same time, Mom's doctor refused to continue antibiotic treatment for her constant UTI's, right before we moved her to the assisted living. She could not open her mouth to eat or drink and she was placed on hospice. Hospitalizing her would only prolong the inevitable and we saw that she was close to the end. Her burial plot was in Miami and we didn't want to change Mom's burial wishes.
Death and Resurrection
To the doctor's astonishment, our brother miraculously survived, but was too weak to care for Mom. Thankfully, his insurance covered his care. Eventually, he came out of physical therapy and vehemently pushed us away, wounded from my sister's consent to DNR. He didn't want our help, not to mention, he had power of attorney over our Mom's estate. We had put our personal lives on hold, to figure out what to do. We were confused by his behavior towards us and his friends chimed in with him. The day after driving back home from Miami to Atlanta, my sister received a call that Mom passed away in the early morning. Back to Miami we went, to plan her funeral. Three years passed and our brother developed lung cancer, dying in May of 2021. Heavy smoking and a lifestyle of excess was to blame. This time we did not intervene, and allowed others to make decisions for him.
After all those years, we discovered many things, while our brother was hospitalized with cancer. The stress of caring for Mom, even with the agency Senior Helpers providing daily caregivers, had changed my brother into a totally different man, both physically and spiritually, and not in a good way. When someone offers to share in the responsibility for a loved one with Dementia, accept it, don't do it alone. Also, non-immediate family members should never judge the family for endorsing a DNR, so I always advise to keep decisions within the family and the professionals involved. That is why everyone should have an Advance Directive or living will, to redirect the responsibility of important life and death decisions away from family members.
Aging with Dementia
Aging with Dementia is not much different from watching a family member die a slow death, especially the hazard of fall risks. When the mind goes and the body continues to function, the main caregiver can become exhausted and possibly ill as well. Dementia can be slow or it can develop quickly. Once the ultimate phase of restlessness passes, and the patient becomes still, all bathing and feeding is in the bed. Nothing is more difficult than holding a shaky, dementia patient in the shower, risking that both could fall. Help should never be rejected, as our brother often rejected us and our help. Our lives went on and we returned to our families and our jobs.
Reluctant at first, and with Covid-19 winding down, I left my job as an office manager at a caregiver agency in Texas. I knew I could help others face similar challenges to my own, and perhaps help families get through it all without the guilt. All these experiences have given us and the supporting team of medical professionals that attend our residents, the confidence that Big Creek Senior Living is a place for comfort. Give us a call today and let us be your guide.
Did you know that an Assisted Living can cost upwards of $5000 a month? Memory Care Homes are often $6,000 to $12,000 a month, depending on the state you're in, especially if there is dementia and incontinence in the mix. A Residential Care Home is another avenue to consider in weighing your options between nursing homes and assisted living venues. A smaller, more private lifestyle at Big Creek Senior Living offers assistance in a more affordable and more personable, homestyle setting.
In an assisted living complex, a shuttle will take your loved ones to medical visits, but no companion is available. At Big Creek Senior Living, we drive our residents to medical visits and accompany them along the way.
We allow a maximum of 3 residents for whom we customize their meals and activities. Call us for a visit and let us show you what we're all about!