April 5th’s #HAWMC Prompt: Breaking News The top story of today is…YOU. Share with your readers your proudest accomplishments in the last 5 years. Don’t be shy, tell us everything! Side note: I am so behind, I might not do every prompt given. This is the first time I’ve attempted this, and with everything I have on my plate right now, including being very ill; I just don’t see it as being possible. Maybe next year!
When I saw this prompt, my first thought was: “I have done absolutely nothing in the last five years. NOTHING! I have had no accomplishments.” I stopped working at the end of December 2010, and have been struggling to stay afloat ever since. But then, I read a blog post against being a caregiver. The author’s point of view was that the elderly person requiring/expecting their child(ren) to care for them is just plain selfish. The post made me feel a combination of disgust (because the author was so harsh), and affirmation that I am not crazy for thinking all the terrible things I think/feel about the positions I have been put in by my parents and immediate family members (I can’t find the article, or I would link it.). It was then that I realized, I do have something to be proud of… Being a responsible “constant” for my parents, despite the pain and suffering it has caused me.
My father has been dying my entire life, or so he always said. In the first memory I can recall, I am sitting in the back seat of a yellow Volkswagen Golf, while my mother is driving the car. My father is moaning, vomiting, and holding his chest, as he is hurled over in pain in the passenger seat of this tiny car. I don’t even think I was in a car seat, because I can vividly remember sticking my head between the two bucket seats staring at him. My mother dropped him at the emergency room sliding doors and a nurse placed him in a wheel chair and took him inside. We went to park the car. My mother grabbed my hand. I remember being able to see my breath in the air. I could barely keep up with her. She kept repeating, “Dear God, please don’t take him yet; please don’t take him yet.” I glanced up at her face. I was just a few months away from my 3rd birthday.
That was just the first (December 1984) of several heart attacks that my father would have over the next 24 years. Some I remember (because I was called out of class, at school, when they happened) and others I don’t. In 2008, my father had a triple bypass heart surgery. He was certain that his heart would not restart, he was wrong. In fact, he was only in the hospital 4 days, with no restrictions. I spent 14 days in the hospital for a bowel resection, with a ton of restrictions. He did, however, end up back in the hospital for blood clots in his legs, but he recovered from that as well.
Outside of his heart problems, my father has had several mini strokes; he has Psoriatic Arthritis, RA, high cholesterol, a blood disorder, and is very accident prone, which has caused him to need joint replacements, plates and screws. He has had a cancerous growth removed from his nose, he has had shingles, pneumonia (several times), sarcoidosis, and an infectious blood disease, and he currently has an aneurism growing in his abdomen (and this is just what I can think of off the top of my head, besides the typical declines from just getting older).
My mother always seemed healthy. She took medicine for hypothyroidism and for high blood pressure, but that was it. She had her appendix and gallbladder out and apparently became septic, but that was twenty years before my birth.
I guess what I’m trying to say is that I’ve always been waiting for my father to die. Not because I wanted him to, but because he had conditioned me into expecting it. I always knew he wouldn’t walk me down the aisle or meet my children. But my mom, that just blindsided me.
My parents retired in 2000 when I went off to college. They sold our house and downsized, because they planned on traveling. But then I got sick, so they stayed home and took on two part-time jobs, instead. My parents’ health decline became undeniable in 2010. In the beginning of 2011, my father was diagnosed with Pulmonary Fibrosis and my mother was diagnosed with early onset Alzheimer’s Disease. My father’s disease was quickly declining. Within a few months, he was on oxygen that was set at level 4 out of 5. Simultaneously, my mother was also declining very quickly with her memory recall. Everything seemed to be crashing down, all at once. I was at my sickest, since my surgery (in 2003) and fighting for benefits and now my parents were in the last phase of their life. My father was told that best case scenario, he had four years (The longest anyone has lived with this severity of lung disease is 12 years and at 76 years of age, he is too old for a transplant.).
I think when you have been a “professional” patient for so long, you become numb to all health related news, at least I have. I didn’t want to sit around and do nothing, I wanted to be proactive. My parents were lucky, they, unlike me, had great insurance, and so, I felt they needed to use it. I researched the best doctors for neurology and pulmonary and made appointments. My father sees the best pulmonary physician in our region, which is a 2 hour dive, but the drive is completely worth it. She prescribed medicine and breathing classes and my father’s disease has not progressed since 2012. He is on immunosuppressant drugs, so he picks up every virus that is going around (especially bronchitis), but beyond that he is stable and he has already passed the 4 year mark.
When it came to my mother, I felt completely equipped to help her. My degree was in psychology, I worked on dementia units and my specific area of specialty was behavior modification. I knew that if we made changes immediately, maybe those changes would make the future easier. I wanted to set up a detailed schedule, do expressive therapy, push her to socialize, label things, etc. She didn’t need any of these supports at the time, but I felt that if we implemented them from the beginning, then they could possibly be useful in the future, when she would need them. Well, my father could not get on board. It didn’t matter how many times the doctors said, “Your daughter is right.” He couldn’t do it. He couldn’t stand there and repeatedly tell her to take her pills. In fact, he couldn’t or wouldn’t change the way he interacted with her at all and often through me under the bus to make me look like the bad guy, when really, he was being a coward. They say that it is the hardest for the spouse to be the caregiver for someone with dementia, because they are more concerned about hurting their partner’s feelings than they are about doing what is necessary to maintain their safety (My parents have been together since 1956, so almost their entire lives.). That statement may be true, but I wanted to do everything that we could to encourage her and keep her feeling positive, and not frustrated. When all of this is over, I want to look back, with no regrets.
In 2014 my mother declined even further. My father was now ready to implement the suggestions I and the professionals had made three years ago, but now it was too late. She doesn’t have the ability to adapt to changes anymore. She is now digressing in more areas than just memory. However, three years later, my dad and I basically agree (finally) on the way things should be handled, he just doesn’t always follow through; all talk and no action.
Being a caregiver is HARD! It is exhausting, emotionally and physically. Sometimes my father retreats to his room and plays solitaire on the computer from the time he wakes up, until he decides to go to bed. Sometimes he even takes an anti-anxiety pill, which knocks him out for at least a day. I can barely care for myself, and now I am responsible for two dying parents. Believe me when I say, that caring for an elderly parent(s) is nowhere near the same as taking care of, or raising children. Children gain skills and grow more independent as they age, while those at the end of their life lose skills and become more and more dependent on others to survive.
Every day, I watch pieces of my mother disappear. She knows nothing about me. NOTHING. She doesn’t even remember that I am sick. She used to be the voice of reason in the family. She kept my father in line; she kept the peace. I miss her terribly. She is here, but she isn’t. It is actually hard to verbalize the emotions that go along with watching someone you love, so deeply, lose pieces of themselves, 24/7, while being sick and doing this alone at the age of 33. It has been five years of organizing appointments, dealing with the insurance company, getting her the right medication, hospital visits, and estate planning (and those were/are the easy parts). I have to constantly advocate for them. I do research and ask a lot of questions, because my parents ask no questions ever. They usually do not even remember what was discussed at the appointment. If I have to miss a doctor’s appointment for my mother or father, because I am sick and I ask what the doctors said or how the appointment went, I am basically given a generic answer. If I ask them any follow-up questions, they can’t give me any answers. When we are sitting in an appointment and the doctor asks one of them a question, they always look to me for the answer.
While all of this was happening, my 50-year-old brother moved into (he is 50 now, he moved into the house in December 2010) the basement of our house. He made HUGE financial mistakes, and he needed my father to clean up his mess. My father’s decision to help him has put a gigantic fissure in our relationship. This year my father had to file for bankruptcy due to my brother’s continued delinquency. On top of all of our health problems, my father was being suffocated by this “business,” and everyone, but my brother, has suffered from it. It kept my father isolated from my mother and left me dealing with everything on my own, because he spent every moment sitting at his desk staring at bills and numerical figures.
I have been taken advantage of and have been emotionally abused daily by my family. I have no help. My brother pays no bills and contributes nothing towards my parents’ care or to the things that go into maintaining the house/property. The complexities of our dysfunction are too much for one blog (I will cover some of these topics in future blogs). My therapist has described me as trapped, and has compared my life to a lifelong prison sentence for a crime I didn’t commit.
“A son is a son until he takes a wife
A daughter is a daughter for life.”
But unlike my brother and other specific family members, I can look in the mirror and hold my head high, knowing that I am doing everything I can to help my parents, including sacrificing myself and my future. And, I am proud of that. I am proud that despite the negligence, the abuse, and the turmoil that I endure, I have not abandoned them.
Like I said, it takes a lot to do this. Most people just put their family members in a home and visit them when it is convenient for them. I’m not saying I am perfect at this, either. I lose my temper a lot, and I cry myself to sleep most nights. But, I am still here.