Yesterday we had our family meeting with Dr. Mowry to talk about how to best support Mom. I anticipated it being tough...I had no idea it would practically knock the wind out of me. I left feeling physically ill; I really could have vomited all over the sidewalk outside of the doctor's office. So let's recap what led to that point.
Getting the story straight
Brian and I were both somewhat unsure as to what the exact content of our appointment would be. Dr. Mowry had suggested that we all get together after she saw Mom last week, so we showed up. Dr. Mowry began by saying that she wanted to explain Mom's medical history to me as best as she could, since it's confusing and she had yet to really talk to me about it. She said Brian could always use the review. So, Mom went into the doctor a couple years ago complaining of memory problems and stress, anxiety, and sadness in the workplace. They began looking into possible causes, and in the meantime she had her first seizure. This led to more testing, which led to the diagnosis of antiphospholipid antibody syndrome (APS), a blood disorder that thickens the blood and makes it clot more easily. They discovered that Mom had vegetation on a mitrovalve in her heart, and some of that vegetation had broken off and gone to her brain. This did not cause a stroke, as I had previously been led to understand. Instead, it caused a series of subcortical infarcts, which means that some areas of the brain were not getting enough blood flow. The blood flow problem messed with the balance of electricity in the brain, causing seizures which have since been regulated with medication. APS is also being controlled by medication, and the vegetation on her heart has broken down without need of open heart surgery (yay). However, the blood flow problems in the brain have caused damage resulting in dementia. This damage is irreversible. The doctors are also unable to predict to what extent it will worsen and the time frame in which it could occur. That's always fun to hear. The good news is, Mom has had no more subcortical infarcts and her blood levels have stabled. The bad news is, the dementia symptoms are progressing and Mom is having a hard time adjusting emotionally to her new limits. The neurologist started her on Aricept to help with cognitive functioning, and it is likely that he will add a second drug when she sees him in August. She is tolerating the Aricept fairly well, but still declining in abilities. So that's where we are medically.
Dr. Mowry explained that people with dementia need two very important things to function well and best cope: routine and a feeling of control. She repeatedly stressed the importance of stability and sameness; any changes in the norm can cause extreme anxiety. Part of Brian's role and my role as family members is to establish routines and do our very best to stick to them under all possible circumstances. Part of Dr. Mowry's suggestions included making a calendar in which we plan a daily activity for Mom. It is very important for Mom to get out of the house everyday, and hopefully planning ahead and having it in writing will motivate her more to do things. Lately Mom has been kind of lost and uninterested in just about everything. The last time she started feeling well, she overdid it and now she has gone to the other extreme. We need to find balance by planning what she will do each day and for how long. Secondly, Mom needs to feel as though she has control over her own life. Obviously there is a loss of independence associated with dementia, but Brian and I need to allow Mom to control as much as possible.
The punch in the face
When Dr. Mowry began talking about the importance of routine, I had no idea what a blow I was about to receive. She had been talking to Brian and me fairly equally, but suddenly she turned her chair to face me and scooted until she was right in front of me. And then she said, "Kelsi, you being home right now is interrupting the routine. It is something out of the ordinary for your mom and it's causing stress. I know she loves you and she is very glad to have you around, but it's different than what she's used to. And once you go back to school, then that will interrupt the routine as well." So in effect, I am worsening my mom's condition by living in my own house while I am home from college. And when I go back to college, I will worsen it yet again. My unpredictable schedule is wreaking havoc on my mom's emotional well-being, and her emotional well-being is so intricately linked with her physical well-being right now that I am messing with that too. By helping out around the house, I am setting her and Brian up for a difficult transition when I go. Apparently I should have little involvement in meal planning, grocery shopping, and creating a routine because I won't be here in a few months.
I told myself I wasn't going to cry in our meeting no matter what happened. I seem to be training myself not to cry in front of Mom. Didn't work this time though. I was basically shocked when Dr. Mowry said all of that, and I felt as though it was a premeditated attack. It seemed to be one of the central reasons the meeting was called, because I guess I have unknowingly caused much stress for Mom by my presence and in my attempts to help and she couldn't tell me herself. Dr. Mowry assured me it's nothing personal, it's just the nature of life with dementia. My eyes welled up, but I held it back. And I held it back, and I held it back...waiting and praying for the meeting to be over so I could find somewhere to be alone and lose it.
But no...she asked if there were any questions. And Mom wouldn't let me not say something because she knew I was troubled about something. When I opened my mouth to speak, instead of words, sobs came out. I hated that I was crying...I didn't want to. I wanted to have control over my emotions and I didn't want to deal with it right then and there; I wanted to put it in a box to pull out later and sort through. But that was just impossible. So I tried to regain my composure, and Mom kept hugging me and grabbing my hand and telling me it's okay. For a reason still unknown to me, I inwardly cringed at her attempts to comfort me. I didn't want it from her. I didn't want her to hold my hand, and I didn't want her to cry with me. I didn't want her to touch me. I feel so ugly saying that...and I have no idea where those feelings came from. I don't know why I wanted to remove myself from my mom in those moments, but I very much wanted to. Am I an awful daughter? A horrible person?
So once I could actually talk, I managed to choke out that I was confused as to what my role is supposed to be. Am I not supposed to help? How do I coexist without messing up the routine? How do I behave now as to minimize the effects of leaving in September? We talked about some of those things, and Dr. Mowry did have some good suggestions. But I still don't feel as though I know what my role is anymore. I don't know how not to cause damage and I really can't do anything right.
The kick in the gut
Thankfully, the doctor forgot to write out Mom's prescription so she had to go back inside and wait to get it. That allowed me to wait outside and calm myself down. Then Brian came outside too, and we got the chance to talk. I was still fighting tears, and he gave me this hug like only he can (Brian gives the best hugs in the world). I thought it was for me...but then I felt him crying and I realized that he was holding onto me as tight as I was to him because we both need each other. And right this moment as I recount it, I can't keep the tears from falling. There is something so utterly heart-wrenching about hugging the man who is essentially your father while he falls apart. And again right now, as I am crying I also feel again as though I could throw up because I can't stand how much it hurts to see that kind of brokenness. I stepped outside of myself and I saw a man watching the woman he loves turning a dark corner and knowing that the future they planned together is never going to be a reality. And while I cry for myself, I cry more for Brian. They say a joy shared is doubled but a sorrow shared is cut in half, but sharing this sorrow with Brian amplifies it to an overwhelming magnitude. And so we cried. And we hugged. And we looked at each other with eyes full of words we don't know how to say, and we knew that from that moment on we can't pretend that this isn't happening. And Brian said, "We've just got to keep loving her." And with those words something in me screamed because I couldn't imagine anything more horrifically sad than the best man I know fighting so much pain. His tear-streamed face will be forever etched in my mind. He said, "I guess this is a reality check." That means that the heaviness is hitting Brian as it hit me months ago, and he can't deny it anymore. And I get a front-row seat.
I think the worst part is that there is no time out. There's no pause button or break time. Twenty-four hours a day, seven days a week, my life and Brian's life and Mom's life are different and we have to cope with that. Period. And I am just so very sad.
As always, I welcome your comments and thanks for stopping by.