I began writing a few different pieces for Donnas Lessons in recent days, but part way through I have been becoming exhausted. I simply cannot recount long stretches of the last few years without having the stress, fear, anxiety and ‘fight or flight’ responses from starting to take over my thoughts and feelings before I finish the piece. And, ironically there is little, compared to so many times in the past, for me to fear. Instead of starting to write a page or five explicating things again, I’ll try to summarize in a manner that respects my own emotions long enough to get through.
When Mom first arrived home, she immediately got worse than the already-needs-help every day she had been going through. Despite having dealt with her in deliriums prior– including walking around in downtown Caracas or Port of Spain, telling me she was in Canada– though almost inexplicable, Mom was suddenly in a dementia, which feels different even when it is similar.
For the first several months I was trying to figure out how to help her, take care of myself, not give in to drink and stop smoking near someone with COPD, try to get a proper visa for my fiancée, get family to lend hands previously promised (multiple times), determine how to maintain friendships without the ability to be involved in their day-to-day lives as I had previously, and not go insane while doing all of these things. One of the only bright spots was my brother, long estranged, deciding to be a brother when I needed it– who then promptly died at least 20 years too young the following year.
The second year was about survival, and trying not to come apart while I tried to get various support services in place. This took more than a few months– I did get a bit of “fast track” help when I straight up admitted to our case manager that I was terrified of falling into killing the pain with alcohol. Sh heard that and sprung into action (my seeing this bureaucrat jump to her feet in our home, and change her attitude, make a few phone calls, break the ‘usual’ regs to get a little more support while waiting for other programs to become available– followed by her taking the time to make a speech to me about the beauty she saw in what I was trying to do, inspiring her– it inspired me and was one of those life preservers so few but needed while I kept learning for myself.
2016 was the year I felt like a zombie entirely. Drugged up, it was the year of a clear fascist rise throughout the Western world, the death of my brother, and threats to our ability to stay in the home entirely. Having just narrowly evaded a bout of suicidal times in the fall, my brother died and I discovered that family members had tried to get the government to force my mother into a home on the argument I was stealing from my mother while caregiving (I am and have been for years her legal rep).
I almost had a heart attack several times, as I found out that the government had frozen my mothers funds as we were trying to pay for a cab returning from my brothers funeral. This took over a year to solve, though it was mere weeks before the basic funds of her day to day life were relinquished. Short version? A family member who had previously promised to help my mother when needed not only refused to help when push came to shove, he tried to not only gaslight me about his inability to do real work involving his family being ‘my fault’, he constructed a long narrative about my stealing from my mother– even though I’ve been surrendering my inheritance and losing money (If my mother went into an assisted living facility tomorrow I would keep this apartment, without a mortgage, in the crazy real estate market of Vancouver. My mothers income would mostly pay for her care, and the left over would go into her long term accounts– making money for me and not her– until she died).
These gaslighting lies led one family member to talk to another, who then reported us to the PGT, nearly costing mom her home, myself another near suicidal time frame, and third parties who were tempted to believe this crap, since the alternative was to see a smear campaign and attempt to decimate my mothers life by someone they wanted to think of as a better person.
Almost all of 2017 was lived out with this constant fear hanging over our heads: Would we be able to make this work? After learning the skills, surviving the worst moments, getting past the death of family members, learning how to function and live while depressed and not ever having a smoke or a drink, how to not only take basic care of my mother but get her out and doing things she loved– and getting better at it constantly– was all of this going to be killed off by some bureaucrat? No. We did manage to prove that during her time at home – minus a couple of the first 7 months– I had spent well under what they had already set as my “legal right” as a caregiver beyond “room and board,” and issues from years prior were determined to not be as thought (Most people in mom’s situation are tossed into the bin, as such they “make” money and their savings generally either only fluctuate slightly based on income, mostly going up month to month– as she had been independent, including living for two years in a place where the rent alone was higher than her income, mom had seen her savings drop. The PGT was mad at me, for example, that I didn’t take away mom’s credit card until after she was scammed by a phone solicitor, nor her cheque book the same. I didn’t mind her losing serious money but money that she wouldn’t lose her home over, if it meant she kept her dignity and personal agency right up until it went bad. I retorted that “You could try telling her what to do in 2011– good luck with that.”)
Living like this has meant having the threat of something going very wrong around every corner. The number of different times that a health issue– or a “confusion” issue, getting into fights with nurses or other caregivers in my place, threatening their willingness to help her/us– has become a real, immediate issue has prevented me from relaxing in any real sense.
There is always something. In the summer of 2017, I made a scared leap into recovery as I see it, and managed to get off the SSRI pills. I began to feel again, and felt real emotions when I got into a forest with trees around me and the silence of the woods. I have returned to the human. The legal issues wrapped up, and I began work on trying to get this site going. I had wanted to try and bring all the various Facebook rants and raves into one place, to try to make some longer term use of this struggle. The things we have gone through– and come out on the other side, still standing, smiling, getting goodnight hugs in her own bed from her son and beside her beloved cat– do not have to be anywhere near this difficult. But there are some factors that do, and I have never been more of the conviction that it is worth all of it. When asked why, I answer simply “I can recover, she can’t.” The look in her eyes of fear when I take her to a respite, followed by the rush of colour back into her face when I appear to bring her back home? That tells me more than anything else.
But over this summer I didn’t really release the level of stress I was holding inside myself, having been holding this all in for years, with new constant issues coming forth and no real sense it’s over, but only “calm.” Our trip to Texada was partially cathartic, as I managed that, though at first it was a new Hell as I couldn’t really ‘let go’ while also being on a trip. Upon returning back home, and starting to put together new things (I’m working on making at least one vegan meal a week, and at least one more vegetarian meal a week for us), Mom went on a respite where I had planned to get out of town and camp. Bad weather and these plans fell through (camping and hiking in the rain during a campfire ban seemed not so enticing), but during the week she was away, I got some sense of peace. Since her return home I have felt a wondrous, new level of patience and even laughter with her. We made it. We beat the lack of services, I overcame the lack of familial support and dearth thereof from others, I managed to get as healthy as one can in a very unhealthy and dangerous situation, and we were not defeated by government set upon us by family members who act without conscience.
As a lifelong committed revolutionary, being on “the sidelines” has also been a trauma, even though I first began all of this with a stated belief this was another front. But it took a lot of work and leading this life to Feel it. I now feel more like a complete person, one with a smiling happy mother who can have all the things that matter to her. In dementia there are few but very real things to grasp onto for the person who develops it. One of those things is that what matters to them is no longer complicated. It becomes so simple, and something– for many people– that can actually be mostly held for the first time. She wants to live with her son, to have her cat, to be in a place where she is less likely to get lost, to be able to go outside and enjoy the good weather, or to stay inside and cuddle her cat in front of the TV in bad weather. To go for walks and interrupt every stranger with a dog for her pats. To wear an honest smile and say a chirpy, happy hello to people who pass by on the street.
To know that the coffee she is going to drink is made with half “boost” chocolate and half real coffee. To have her piano, and to play for an imagined audience several times a week. To feel right in the world surrounded by love.
I’ve found the last three weeks that I have a level of peace I have not known for several years. I find a smile on my face when I’m not looking for it. I’ve got a little of my spark back– and I still have Donna to share it. Something is always around the corner, as I say. I have found that the number one thing that is stressing me out lately is that I’m waiting silently for the next ball of stress. I’m stressed out by the lack of it. It’s foreign to me. I know not how to simply live when things are not feeling like it’s as tenuous as a Jenga tower in a hurricane.
I have been withdrawing from writing these things, in part, because talking about this material brings up too much of the stress. I am stressed out because I don’t know how to function without heavy stress anymore. But I’m learning. Mom is still my teacher. What matters to her? Well, as the seasons change, I’ve committed to making sure she can get to a few of her hockey games this Winter. Financially, it’s a little dicey, but that’s not as dicey as going into a winter time with someone who becomes a shut in when the temperature goes below +10 Celsius. What matters is watching our cat programs (long live Jackson Galaxy!), hockey and wrestling shows (yeah, Donna went there and so did I), reaching under the coffee table to the treat jar and calling her cat over.
When I say “Mom, can you give Mollie a treat?” she knows where the jar is. She jumps forward, very motivated, and gets a few of them into her hand. She holds that hand out for her cat, who happily climbs up with her and they have their moment. Mom talks to her, but I can’t really hear it– it’s for Mollie anyway. I just need that white noise. To hear that loving “cat voice” from her. As long as I have that, her nightly “Love you, dear,” as she is going to bed and somthing else: Her constant ability to appreciate it. Donna has tried to be the most considerate person I ever met since I was born. When she is struggling with her mind, she falls back on that ever more strongly. I get thanked even for things I don’t do. I’ve also noticed that she finds ways in talking with others around me to reaffirm how well she thinks I’m doing. I know what I’m up to, but there will never be anything that means more than that. She does little things to show this all the time. Considering she can’t recite the address here or operate a remote control, this shows the solid nature of her character. She refuses to let things come to her without being cognizant of being a thankful person. She basically shames me and almost all of us—working with undamaged merch, and still unable to express how well we are helped by others. Her courtesy will invigorate me for the foreseeable future.
For now, I’m freaked out by not being freaked out, and life waiting for the shoe to drop sucks. It’s living inside a tragedy where you don’t even know the plot or the swerves in the story. I’ll stop here, because the very freedom from feeling impending doom has been leaving me via my writing this. That, and family members who contact me to demonstrate they still want to attack and blame me for their inability to help Donna. I almost barfed, but I just refuse. If you come to us with negativity, judgement, threats, pathetic excuses about your own issues, or what-have-you? If you try to undermine our existence with your gaslighting, you almost relax me as something “has to” come along to provide more stress. But we’re here, Mom is using all the agency she can, and I’ll just keep working on trying to believe in the right to not be stressed. Take out the garbage right away. Spend the extra five minutes helping my cat Baisol get his energy out, chasing his bird toy. Making sure Mollie has access to her pillow outside, where she never tries to leave our patio (“Catio”). Mom’s juice or tea never gets dry for long. And request the piano before bed, almost every single night. We earned this. Mom with her patience and encouragement. And me. Because I decided to be someone who could do this for those he loves. That, more than anything else, is the “non-Donna” reason I have done this. Because if you want to be a revolutionary who tries to save the world? Try to save your own family first.
Tonight, after she gets back from her day program, I intend to ask Mom to play “Don’t Fence me in” (Bing Crosby) on the piano. For some reason, such a song seems very appropiate. And then she gets her good night hug. I started paying attention to what would be the last words she hears every night a couple of years ago. I wanted to make sure the last words she heard from me before going to sleep would be “I love you,” but it changed (expanded) over time. Now it’s become:
“….and I love you too, Mollie. Enjoy your dinner sweet one. See you in the morning.”