I've been going to the hospital every day to visit my mother. On average, visits are between 2.5 to 3 hours per day. I quite often have the intention to keep it short and uplifting, and then it ends up more and more difficult to leave, as I get pulled into the emotion of a moment or conversation, or simply wanting to gaze at her beautiful face a little while longer.
Progress:
From completely refusing medication and crazed delirium, my mother (who has now been in hospital close to 3 weeks) can swallow her meds with no problem, and eats the majority of her meals. Here's a photo taken at the beginning of week 2, when she only ate 1 meatball and a spoonful of pudding. Hardly sustenance, but at that time it was major progress.
Increase in appetite was directly related to her body's condition. When my mother arrived in hospital, her sodium levels were dangerously high, as was her blood pressure and sugar. Her potassium levels were dangerously low. With her eventual cooperation, she was stabilized with meds first intravenously, then taken orally. Here is one of her typical daily monitor measurements, indicating blood pressure, pulse, oxygen level and body temperature. Not ideal, but quite a progression for my mother. I am grateful.
The brain is a curious thing:
From about the middle of week 2 until now, I don't know what to expect from each visit cognitively. You see, my mother has dementia. I knew this from the time she got off the plane in Montreal, and marveled at how she lived independently for so long. I've known for a few months now that her cognitive decline wasn't typical "forgetfulness". It was on the agenda for follow-up by the medical clinic in a couple of months. And yet after her fall, it was like someone shook her brain, jumbled it up, and left my mother like a broken jigsaw puzzle. Sometimes the pieces fit, and she can be light and joyous. Other times the pieces don't fit as she tries to cram them together and ends up yelling angry and confused. And whichever mood she is in when I arrive, it typically changes 2 to 3 times per visit. Statements are repeated several times within an hour, each time as if it was the first declaration. The hospital can be "awful, like a prison", treating her with "no dignity" one minute; the staff are "so kind and it's a wonderful place to stay, I'm so happy" the next. I know everyone is doing their best. I understand how short-staffed and overloaded hospitals are. I am grateful for the care that goes into looking after my mother, and apologize to them for the difficult moments when she is frustrated, angry, defiant towards them. They know and understand. And I feel like some of them go home and cry too, because they can see the essence of the human underneath the layers of frustration, the puzzle pieces that don't quite fit anymore after they've been dropped and warped. And they see multiple such cases day in, day out.
The diagnosis:
I received a call from the attending physician yesterday afternoon. My mother has Alzheimers Disease. Further tests will confirm the stage, the treatment, her care, etc.
What's next:
My mom was moved to the rehabilitation floor of Anna Laberge Hospital, where she will be doing physio exercises every day, and hopefully will regain control of her bowels as well. The focus of the unit is to prepare the patient for release. During this time, she will also be tested by an ergotherapist, who will determine whether she has the capacity to perform day-to-day activities, and what level of assistance will be required. Finally, the neurology department will advise what stage of Alzheimers my mother is in, a social worker will be assigned, and living arrangements will be determined.
Here is all of the above from a personal perspective:
Progress:
Thanks to friends who are like family, I have received the greatest social support imaginable. My friends offer me space when I need it, visits or invitations out when they know I'm isolated and needing to get out of my negative bubble. I had an awful session with a therapist, but as a result I ended up finding a great psychologist through a friend's glowing referral. 2 sessions in with him, and I feel that I can put in the work to finding positivity in my daily life. Shadow my glorious cat is always with me (I really should dedicate an entire post to her one day) to comfort me at her convenience (she is a cat, of course).
One amazing group of friends who I call my Mama Tribe, delivered a basket and a visit, and here is a beautiful necklace that I received. I read the box inscription and wear it when I want to remind myself of the love that surrounds me:
My family call me every night. Not an evening missed. I've taken the crash course on Snapchat, as my daughter and I "snap" each other daily. My snaps are usually quite boring: what I'm eating, or me crashed out on the bed or couch after a long day. There's a nightly video chat with my husband, and while I envy seeing his further deepening tan, he is supporting me with his soothing, thoughtful and kind words. Every so often I get a group chat from all 7 of my family in Honolulu, which quite simply feels like a big hug.
I'm eating well., always keeping in mind that whether I have a family to feed or not, I have to nourish my body, keep myself healthy. The side salad below was delivered to me by my cousin and auntie. Garden fresh.
With the kids away, I put mushrooms and seafood in everything. The only positive to not having them around.
The brain is a curious thing:
If you know me well enough, you know how I'm dealing with my trauma. Making lists, making calls, filling my agenda with all that needs to happen. It's my coping mechanism to go go go, and then when I'm exhausted I scroll social media and cry myself to sleep. I'm not perfect. I know I should pamper myself a bit more, wind down, and I do so in little spurts. I know that I need to get back to reading, working out, finding my happiness. My brain knows it, my heart knows it, and yet my spirit is still just a bit broken so I need some time. Luckily for me, my vision isn't clouded by dementia. I briefly went through the guilt of what I would have, could have, should have done. But, I know none of that can be changed, and the guilt phase has (mostly) been conquered. Still processing the changes, always thinking of my mother and how to advocate for her, be there for her.
The diagnosis:
I'm not sure how to express how I felt during and after that call. Numbness (trying to process), relief (at having a diagnosis), sadness for her (she doesn't know), sadness for me (I had so many memories left to make with her), anger (damnit, we were just getting started with her new life in Candiac), loneliness (my family is still in Hawaii).
What's next:
Visits to the hospital have been daily with few exceptions. I hope to work my way down to 4x per week once the family return from vacations. Lots of phone calls to be made. I've registered myself to a workshop series for caregivers, and will consider joining a support group as well, as soon as I can breathe and slow down enough, and figure out where and how my mother will live out the rest of her life. Finding time to see friends and keep up social networks is important to me as well. So much of my existence is based on the social connections I have and maintain. My mantra has always been: Find your balance. That's my objective for the weeks, months, years to come. But for now, one day at a time...
No matter what happens, I love you mama. I'm with you every step of the way.
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