This guy has been my mom’s doctor for over 5 years now. He knows her extensive mental health history which has been her battle for the past 30 years. I have been her caretaker and confidant, the one that she shares her thoughts, scary hallucinations, and delusions with. It’s my job to try and bring her back in touch with reality. She shares with me what she tells no one else.
“They’re coming to get me, Jenni! Someone’s coming,” she often whispers to me as we leave the house. Her caregivers at the Adult Family Home aren’t aware of her anxiety, she works hard to suppress it. When it becomes too much everyone knows and she is a bundle of fear and confusion. “What do I do? I don’t know what to do,” she will say. Redirection is the answer and she had coping mechanisms that she would put into play whenever she was able. “I’ll just go and lie down,” is a frequent answer to he anxiety.
Whenever we go out, a chocolate milkshake is on the agenda. My mom has a sweet tooth and chocolate milkshakes are her favorite. I have used the milkshake as a bargaining tool for on many occasions, it’s a good one. Her doctors and dentist office have hear me saying “just a few minutes more mom, then we can go and get an ice cream.” She has no problem getting up in the middle of her appointments, thanking the doctor, looking at me, and saying, “it’s time to go now.” She is the sweetest person that I have ever met and anyone that knows her would agree. She was raised in New England, to be a very proper young lady and grew into a sweet and caring woman. She never swears, and she has a smile and kind words for all. This is my mother.
She is tired. She cannot fight the battle in her head any longer. She has been asking me why she has to live like this. “I want to have a good life Jenni, mine is bad.” She is in fear most of the time. She has paranoid schizophrenia. For some reason, I don’t like to say that she is a paranoid schizophrenic, because she is so much more than that. Her illness has been profound and heartbreaking, for her and all of our family. We have suffered many losses. She lost her independence at a young age and needed full-time care because of her psychosis.
My mother was a vibrant 50-year-old woman, who loved to sing, dance, go camping, and play golf. She was very active, and it was extremely hard to find a good place for her to live. Sadly, caring for her in my home was not an option. I couldn’t take care of her 24 hours a day. My husband worked hard to convince me that it was just too much for me, and for us. We were newlyweds, with new careers and beginning our family. Of course, he was right, but it felt so wrong, not to be able to take her into my home. I have been her support and her “Power of Attorney,” in charge of all her healthcare and big decision-making.
I had to move her into a group home setting, with 3-4 other mentally ill, older women. The youngest was close to 70 years old. I won’t ever forget the feeling of moving her in with some women who looked obviously mentally ill and that contrasted so much with my mom. Vibrant, healthy, energic, and beautiful, still wanting to dance and sing and play golf. I couldn’t imagine her looking like a mentally ill woman, but in the back of my mind I knew; someday she would. I would deal with that when it came, I tried hard not to think of the “what ifs.” There were many and none of them could prepare me for what was to come, only God knew that. I took things one day at a time.
Back to that doctor that knows my mom and me so well. He knows her history, he knows that I am a nurse and have been her caretaker for decades. We have an appointment with him on Wednesday. At the last appointment that we had with him a few weeks ago, he told me that her long-standing kidney issues were getting a bit worse. The lab results showed a decline in function, and he wanted to recheck in a few months.
“Ok,” I answered, but before I could say anything else he said, “I will refer her to a nephrologist if they continue to worsen.” “Why? I asked, “she’s not going to get dialysis.” “Well, I would refer her so that you could talk about dialysis,” he said, acting dumbfounded as if I were making a rash decision and he was taken aback. I responded by saying “She can’t get dialysis, there is no way she is going to sit in there for hours on end 3 days a week, that’s impossible for her!” Then the kicker: “You’re just going to watch her die?” he asked.
This took me up short, it almost took my breath away. It caught me off, guard. I should have answered “Yes doctor, just as I have watched her live.” Instead, I just answered “Yes,” and he continued to argue his point. “You’re going to watch her get confused and weak and her body is going to give out, I’m a nurse, I reminded him, I know all of this, and she can’t go through that, there is no way!” Mind you, on many occasions during her appointments, she would get up, take her coat from me and try to walk out the door, because she wasn’t staying in that room for another minute. He knew my mom’s history, he is her doctor, but he didn’t see the woman in front of him, he just saw the lab results and, as if on autopilot, was following protocol.
We have an appointment with him again in 2 days “a follow-up.” I kind of want to cancel, not because he was being a less than less ideal physician the last time, but because I’m at my getaway home on a beautiful river, relaxing and contemplating some heavy things. I use this place to process, write, and reflect. I can’t do that as much at home, it can be stressful. I love my life, don’t get me wrong, I’m the most upbeat person I know (on most days) I know when I need a break, and right now, I need a break.
If I go to the appointment with my mom on Wednesday, I will have to give her doctor a piece of my mind. I will tell him exactly what I thought about his lack of insight and inability to take off his blinders. I didn’t mention that he proceeded to make sure that my mom understood the fact that I was choosing for her that she would not be referred for dialysis if/when her kidneys went kaput, and if “she was ok” with that choice. I get the legalistic procedural “cover-your-behind” conversation that he was trying to have, but because I have been her POA for 20+ years and have made every health decision for her, it was not necessary. This required me to explain to her, she is too ill to take any treatment if/when her kidneys fail, and she will die. She indicated that yes, she understood and would do what was best for herself. If explaining why my mom wasn’t a candidate for dialysis and attempting to remind her doctor of her condition, I had to let my mom know that as her kidneys failed, we wouldn’t do dialysis, but we would “keep her comfortable as she passes away.” It was harder for me than her, I think. She is getting tired of this life.
She has been saying “she just wants to go” and that she is tired of being sick. She’s tired of fighting the battle in her mind. She gave it all she has and has done the best that she could. Who could blame her, she hasn’t had a very good last 30 or so years. My mom is a Christian woman and raised her family in a Christian home. We have faith and we know that our soul doesn’t die. We believe in God and His son Jesus. We know that when we die, it’s not the end. And she will be going to a better place, where many of our family are. I have researched, I have heard many “near death” experiences and unlike a lot of people, I don’t fear death. I have looked at death, I have held people as they died. I have helped many to die. It’s a very important part of life, the culmination of our time here on Earth and it’s best experienced with our loved ones by our side.
There is a circle of life, and unless Jesus is coming soon, (that’s quite possible, as I am a believer and I see what’s happening in our world,) we are all going to “meet our maker.” Thinking about this and acknowledging the fact that death happens, we can think about what we would want our last days to look like. Many people in our western culture want to push hard for their longevity, taking all the treatment that can batten up-the-ship and keep one plugging along. Sadly, the many ramifications that come along with aging and ongoing medical treatments can rapidly affect a person’s quality of life. Weighing out the options beforehand can give a much better outlook; with this forethought comes clarity. If we could choose the path of our last days, what would that look like? Do we want to take advantage of the many resources available through hospice or palliative care? Will we try to “age in place” and stay at home if we are able to? Will our family be supportive of this decision? The pre-planning and having what may be hard conversations, perhaps long before needed, can bring a piece of mind to the whole family.
Aging shouldn’t come as a surprise and our family doesn’t have to be caught off guard, by not knowing our wishes. My husband has made his wishes clear to me on numerous occasions. He has experienced a lot, living with three nurses in the family. He is vocal about his feelings on end-of-life, I’m sure will try to haunt me if I don’t abide by them. Keeping the communication lines open with your loved ones and having these conversations can help to prevent the mess that occurs when all the family is on a different wavelength when one of them is dying. The patient, in my experience, is usually comfortable and has accepted the fact that their life is ending; it’s the grieving family members that can’t come to terms. They don’t have anything to rely on, there weren’t any talks about wishes and end-of-life issues. But it doesn’t have to be this way; we can have the support needed and create a dialogue with our loved ones. Knowledge is power and being empowered leads to feeling some sense of peace in a very emotional time of life. It surprises many that death can be beautiful, it doesn’t have to be feared. Families come together and love is shared and in these precious moments, there is often a blessing.