Last year, shortly after I returned from a sudden trip to China visiting my seriously ill mother, I was sharing my sadness with a coworker. She pointed out, that based on her own experience; the sadist moment of taking care of your ailing parents was when you realized that they couldn’t recognize you. I couldn’t really feel what she was describing. Mostly because I was so much still soaked from all the sad images I collected about my mother during my 7 days short visit.
In less than ½ year from when my parents left me to return to China, my mother fell off a cliff with her health. She couldn’t sleep at all for days and weeks. Desperate was not even close to describe how she must had felt at the time, to try to cling on to someone with a normal living soul at night so that she could feel a little bit comfort that she won’t be snatched to the other world. We didn’t understand her; thought was her demanding nature; thought was her mental weakness; thought was due to her sadness from having argument with me during my last few month of a tough pregnancy…
Now I think back, there were so many alarming signals before the collapse. There were times when I call back; she would not answer a normal question. I thought she was just upset about something and didn’t want to talk to me (of course I said the heartless statement like, I am not going to really talk to you for anything anymore if you don’t care to hear from me…). I saw a picture of my parents that a friend took while visiting them right around the time that her health started to go south, she looked awful – hair not brushed and buttons wrongfully positioned... I thought she was just in one of her down turn period. She has had a lot of those high spirit and low spirit periods. Relatives were telling me that my mom would call up her old friends and colleges to ask them to visit her. I thought it’s her narcissistic nature tricking her. We were so ignorant that we brushed off her reaching hands again and again. We were so wrong. I was so wrong.
I delivered a new baby in mid March. Because of that, I guess my family and friends were trying to cover and hide the seriousness of my mom’s health collapse from me. When I finally realized that something was seriously wrong with my mom, that’s probably 2 month after the avalanche had started. I demanded that she’d be sent to a hospital ASAP and begged a friend who has local connections to arrange so. She was sent to a hospital in 2 days.
There were a lot of heart aching stories since then, in dealing with the hospitals and doctors. By the time I finally arranged to fly back to China, she was already transferred to the 3rd hospital. The first one she stayed tried to exam her and treated her and couldn’t find what the cause of her situation was and what was wrong with her. The second hospital kicked her out after one night of staying, with the dean of a university college at present, in the name of more important patients were there and the division of the hospital that she checked in was not suited to treat her. We are talking about the division specialized in treating brain disorder patient whether that be a stroke patient or a psychological patient, of a general hospital in a large metropolitan city in China. There was one in between, a psychiatric hospital that refused to take my mom as in-patient, in the name of she was too old as an in-patient. Instead, they worked with the first hospital and prescribed a large amount of sudation medications that knocked my mom to sleep in often a 24 / 24 hours cycle. Meaning, that my mom would be so sleepy that she’d sleep day and night, then wake up and be super agitated for a day and night. Normally you’d think that a close supervision and observation need to be at present when a patient is severely sedated. But she was left in the hands of the medical professionals who were not trained nor experienced with these strong psychiatric medications. In the 3rd hospital where she stayed last, she was staying in a tiny room with no A/C in grilling hot summer July weather, and neighboring to criminals with mental problems. When it was the break time for these convicts, the nurse would come to lock my mom’s doc. That’s where I saw my mother the first. Her first line to me was “What took you so long?!” I was so sad that I asked everyone else to leave that room and all I could do was to hold my mom in my arm and hug her and rock her like a baby. Initially her body was so tense that her muscles felt like rock from spasms. I started massaging these hard lumps unconsciously, and soon noticed that one by one they started to soften, but some places would tremble to hard rock like blocks again. Her mouth was drawling like open faucet. I couldn’t understand most of what she was saying for her voice was totally muffled. But she was able to answer my question like whether she was abused. I had to ask that question in a non-direct way because I was bruises on her arms. Till this day I still don’t have an explanation on why there were those bruises. There and then I decided that she must leave that hospital. We checked out of that hospital the next morning.
Through all these hospital staying and doctor seeing/consulting, none of the Chinese doctor could give a conclusive diagnosis about what really happened to my mom. The best one was that she was having some degree of dementia on-site and Parkinson advancement and bipolar and depression and anxiety attack. Wow, how much more broader can they get from this diagnosis. I as a lay man could see that my mom was extremely depressed and anxious and lost her mobility and with muscle spasms. If that’s all they could tell me, what do we need them for?
Not only that, after I brought my mom home, I saw that her lips were all swollen as if she was having an allergic reaction to something. It couldn’t be from the food since she was eating familiar food that she had before. She was not able to open her mouth big enough for anything other than liquid food. No chewing capability. Due to the drawling and swollen, her lips also had sore. It was heart aching to watch her eat. Yet she must eat to survive.
The last advise I got from the departed hospital and all other doctors that I could brought my mom’s case to was to bring her home and treat her nicely and don’t worry about medical treatment for there is none to treat her. I guess that’s why one after another hospital rejected her.
I was mad. I decided to take the matter into my own hand. If my mom would die one day, she would not die of starvation in this day and age. I started to research on the internet about the medication that she was prescribed from the last hospital. I started to talk to everyone around her at the time of her collapse for detailed description of what they saw of what was going on with my mother when she fell off her health cliff, what medication she took and the reaction to each, etc. I recall the health history of my mom years before this collapse. I tried to get as much as I could directly from my mom about her feelings and how she felt since she left me and returned China. I sequence them again and again, cross reference left and right…
First I learned my mom’s memory is still there and very quick at retrieving historical information. She didn’t seem to have any short term memory problem either. So Alzheimer disease was ruled out. She never exemplified on-top-of-the-world attitude, so it’s hard to tie her to bipolar. Anxiety, very much so. Depression, definitely there. Not just then, but months back and years back. She had increased muscle tension on one side of her limbs, trembling lips and crazy hands. By crazy, I mean that she would pinch the person she was holding hands with so quickly and so hard unconsciously, sometimes when she had the slightest upset or sometimes without any apparent reason. Yet she wanted to hold hands with someone all the time. She was not able to control her bowl movement and bladder. She was forever sad, and wanted to give up life. One day I saw her looking up through the window, said quietly “please relief me, let me be free”. My default translation based on my understanding of my mother and my hope was that she wanted to wake up from this nightmare in a snap of the finger. I didn’t want to think any other alternative meanings behind. But sometimes, when I watched her sleeping/resting in bed, I couldn’t control my feelings that tears would just roll down my face. One time she was that, and told me to walk away and not to see her so that I won’t be feeling so sad. Even in that terrible situation, in the few conscious glimpse moments, she was still thinking of me. I have tears rolling down my face just writing about it.
Although all these symptoms could tie her to Parkinson advancement, but it wouldn’t jive with the sudden down fall. More and more I feel things are pointing to Dementia. But there are so many flavors of it. Which one she has? Based on her old profession (researcher in pesticides), based on her old head trauma, based on she has had heart failure and has to have a pace maker installed, I start to lean towards that she has a vascular dementia. Now I regret that we didn’t find out her heart problem 2 years sooner. Her pace maker was installed only 2.5 years before this down fall. Of course, there is always this possibility of mini strokes in her head recently, so small that modern medical equipment can’t detect, but enough to bring down her physical and mental health. With Dementia being the primary diagnosis from this doctor myself, I looked into the medication she was given - Risperidone. In the black frame of this medication, it was stated clearly that this medication is not to be prescribed for elderly patient who has dementia. One of the side effects is to cause the patient to have excessive saliva. It could mess up even worse of these elderly due to its influence to their brain. So I related the saliva side effect to my mom’s drawling. Then I related this to a statement my mom made to me. She said, “It’s hard to form a thought”. Also, based on the final direction from her doctor in the last hospital, “it doesn’t matter too much whether she takes the Risperidone”. Then I recall my mom tends to have allergic reaction to things just like me, having super sensitive body. I decided to slowly but surely withdraw the Risperidone from her daily medication.
Once that decision was made, I was facing the challenge to find a substitute medication to help to manage her depression and anxiety, while not knock her dead, i.e. putting her to drowsiness all day long. First I found a Chinese medication that was referred to me by a friend based on experience from a relative. The medication’s name is Wu Ling Jiao Nang. The review seems to be good and match to what we were looking for as far as effect was concerned. So we added that one quickly, after consulting with a psychologist. This step was not passable since these are all controlled medication.
We started to decrease the Risperidone by ¼ pills in every in-take in 3 to 4 days of a period. The allergy like swollen on my mom’s lips were decreasing quickly. Because of that she seemed to be able to swallow better. Her other symptoms didn’t seem to get worse. So this encouraged us to continue with this direction.
(to be continued…)
