It's a Thin Line
Last updated: March 2023
“There is nothing more painful in life than watching someone you love suffer, and not being able to do anything about it”.
I love my mother, but I hate Parkinson's Disease (PD). I hate it. I hate it. I hate it.
My mother is 85 years old and has PD which is a long-term degenerative disease that affects the motor system. The obvious symptoms are tremor, rigidity, slowness of movement, and difficulty walking. In the advanced stages of PD, dementia becomes common. My mother is in the advanced stage. They say you don’t die from Parkinson's, you die with it. What they don’t tell you is that your loved ones suffer too.
Where the disease begins
My mother is currently living in an Assisted Living Facility (ALF). The staff takes very good care of her, but that is not enough. She wants more. And I have come to learn that it’s a fine line between what she wants, what she needs, and what I can give.
I mean how do you go from a vibrant woman who played tennis 8 days a week to this? A woman who trembles against her will, has difficulty writing, remembering things, speaking, or making a decision. Everything she attempts to do is labored.
It is draining to take care of her. It's like taking care of an infant who needs you for everything, but with none of the joy. She never feels well, she can be demanding, impatient, combative, argumentative, complains, and is rarely happy with anything or appreciative of anything I do. Intellectually I know it's mostly the disease. It changes your personality. It's just that sometimes I can’t tell where she ends and the disease begins.
Trying to be strong
So, I can only give what I have. I use an analogy of a bottle of water. I show her an empty bottle of water and tell her, "it's empty, right?" She agrees. “I can’t give you what I don’t have.” But she is thirsty and wants water whether the bottle is full or not. She feels entitled, deserving, and wants what she wants, despite the price of my mental health.
“You don’t love me, she says. Everything else is more important.” Again, I know it’s the disease speaking, but her words hurt. Her words tear at my heart and repeatedly echo in my mind. At what point am I allowed to admit that this is killing me? But Parkinson's is a job that I am not allowed to quit. I can’t abandon my mother in her greatest time of need, no matter what the cost. “But I am the sick one. I am suffering worse,” she says.
So, I give more than I have out of guilt. I give more than I have out of compassion. I give more than I have because I see myself who may be in her position one day, Do I want someone to walk away from me? I want to be strong but I am learning that giving more doesn't make you strong. Knowing when you can't give anymore and drawing your boundaries is being strong. That's where I am now, four years into this journey.
Pain and hallucinations
Her pain affects me. And my pain affects those who love me. And it's not like an illness, that goes away. This will never get better until she dies. And there are days I pray for her death. But what I really pray for is to end her pain. But, the crazy thing is, in between all the craziness, she can have a good day. There are moments or days I recognize the mother I yearn for and love. The mom who is playing Bingo and beating everyone at Poker. Then I feel guilty for having such dark thoughts. I start to have hope that a new medicine is working, but the bad mother reappears and the emotional up and down makes me crazy. Just when I resign to one of two fates, it changes. I mean isn’t growing old hard enough?
My mother struggles with hallucinations. She sees and hears a man who she says is trying to harm her. It started when she heard a boy and his father who were singing opera. At first, I believed her and thought her neighbors were playing loud music. But no one else heard the music. Mom has Tinnitus and convinces herself the voices are caused by Tinnitus. I mean no one wants to believe they are hearing things.
Then she started seeing bugs that no one else saw. She is so convincing in her details of the bugs. She would point and say, “it's right there.” But no one else sees anything. I called the exterminator to appease her but have since learned that seeing bugs is a common hallucination.
The hallucinations only got worse, even after increasing her anxiety meds. She sees and hears a man. He is waiting for me, she says. He is in a blue car. He is going to kill me. She says her I love yous to me as if this is going to be our last conversation before they kill her. “Have a good life,” she says.
Difficult phone calls
On a day to day, hour to hour or minute to minute basis, I don’t know which mother I am going to get so when she calls, I wait for her to leave a voice message before returning her call so I can be mentally prepared for either the good or bad mother.
I have become numb to the numerous phone calls (mostly at 5 am) I get when she is in hallucination mode. Her meds must be given to the minute or she will feel the effects of the drug wearing off. When she calls me in a half asleep daze, I hear, “You have to come here. If you don’t come, you will never see me again. You know I don't lie. They are coming to kill me. If you love me you will come. You have to believe me. I am telling the truth…” She will lock her door afraid of someone bad entering. She will call the police, the fire department, she will pull the fire alarm. She sincerely believes she is in imminent danger. She will run down the hall and enter another resident's door that is unlocked seeking safety. I know this sounds insane. And I am not writing this about a fictional character or some stranger, this is my beloved mother!
Of course, the first time I got this panic message, I ran over to see her. After 4 years of getting these messages, I have stopped running over. I know she is safe in the ALF, but believe me when I tell you how hard it is to ignore these calls. I try to assure her that she is safe. I try to redirect her attention, and I try to get off the phone as soon as possible, because my heart is on the floor. My heart is pounding. I feel like I am going to have a heart attack. I envision both of us side by side in the hospital. How can I go back to sleep? Her call stays with me all day. It's hard to erase the sound of the panic and desperation in her voice and just go on with my day. Her disease is a big dark shadow that follows me wherever I go. No one understands why I am sad. Depressed. No one wants to hear about my mother anymore. They politely inquire, but trust me, no one wants to know.
So how many of these calls is a child supposed to take? I remind myself that I am the daughter, not the caretaker, but the reality is, I am both. At a time when I need a mother, instead I have to be one. No child should have to hear their parent utter the words, “Help me die." I should be convincing her to want to live, but those are not the words that come out of my mouth. I tell her that I feel her pain and want the suffering to end. Every time I speak to my mother, I tell her I love her but my heart just breaks, over and over again. It just literally breaks. There are times when I feel that this is it. She is going to die. I imagine her funeral. I try to imagine if her passing will create peace or just more grief. It's like Groundhog Day. I attend her imaginary funeral over and over again but she hasn’t died yet.
The physical and emotional turmoil is only half of it. There is also the financial burden, scheduling aides, managing her finances, making sure her medicine is given on time, researching ALFs, talking to attorneys, financial advisors, waiting to speak with doctors, getting a POA from someone who thinks they’re fine, pharmacists, health insurance bills, ER visits, urinary tract infections, changing doctors, moving prescriptions, putting her house on the market, moving to ALF against her will, fixing her phone/computer, getting her hearing aid adjusted, running errands, etc…
There is a promising medication (Nuplazid) made specifically for PD patients who suffer from hallucinations, but the price tag is $6,100 a month, so I am trying to get financial assistance. All of this takes an incredible amount of patience, energy and time.
I am extremely fortunate to have a sister who helps carry this heavy burden. We both live 10 minutes from our mother. In fact, my sister carries most of the burden. She does some things which I find impossible to do (like taking the panic calls in the am) and I am better with the day to day administration and paperwork.
This disease has no mercy. I am empathetic to her condition but I also get frustrated. I understand that no matter what I do for her, it will never be enough. Even when I overextend myself, I get a, “you’re not nice to me. I need softness and kindness. I need to be loved." I even moved to be closer to her but the truth is, its too hard to see her like this. She is coming up with any reason to see me while I am coming up with any excuse not to see her. And I feel guilty for complaining because the reality is, she IS suffering more.
Where to draw the line?
So where do I draw the line between helping her and helping myself? I have become a person who is consumed with her disease (dis-ease). It may as well have invaded my body and brain too. There is a saying “I didn’t cause it. I can’t control it. I can’t cure it.” I try to tell her that if I don’t take care of myself, I can’t take care of her, but her needs are just too great.
I know my story is not unusual. But it's my story. I believe a lot of people who know someone with PD will relate. I am still on this journey. I am not sure if there is anything I could have done differently and I am not sure if I am able to do any better in the future. I just know that I am doing my best.
I pray for my mom's relief and to every patient, their loved ones, and to every caregiver who suffers alongside their loved one. I no longer want to suffer in silence. So many articles focus on the patient, maybe I can shed a glimmer of insight as to how this disease affects the husband/wife, child, sibling, and friend. I join hands with all of you today and every day and just pray. I mean, at the end of the day, what else can we do?
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