March 11, 2019
I haven’t written here for a couple of months, and there’s multiple reasons for that. After Donna broke her pelvic bone, I spent the first couple of weeks heading to see her and help her rehab constantly. Then once she was moved to another location, a ‘convalescence’ facility, my ability help her recover dropped and I learned something:
When you are a caregiver and your loved elder is not with you, the caregiving depression is actually much stronger. This really, really kicked my ass.
I felt unable to do anything, go out, do much more than minimal cleaning, trying to eat properly, it was devastating. As a caregiver, absolutely everything else gets sidelined by this need to care; When you are unable to care or your loved one is in a situation that is bad for them, it’s possibly worse for you– if only psychologically. Donna did me huge favours, though. One of the things I had a hard time with was feeling like I knew my role in that situation. After realizing that Donna wasn’t following rehab procedures from nurses, et al, I could get her to participate more fully. So, for about the first week and a half, things were easier for me as I had a crucial place to put my efforts into.
Then she would constantly be “bumped” as I would go in, pre-phoning to let the Rehab Assistant (RA)’s know when I would be there but discovering that “they didn’t have time” to work with her almost every day. I gave up after going in four times in a row at points where there was no reason for me to be there, beyond a nice break outside together where mom got a real coffee and a doughnut of her choosing. Donna still helped me feel better about things, though: As I arrived to her ward, before I spotted her she would spot me and wave until I waved back, seemingly relieved by my presence. This is a motivator when talking is more difficult.
One of my main obsessions of the time was to make certain that Mom not get into a place where “care” became sterile, and instead we kept working towards making sure that the various activities and more that were and are important to her be possible and prioritized. Basically, this means for me her ability to walk about her apartment, and to go up a few stairs or down a few to get to places that are “just out of reach” if we only have the wheelchair. There are places, for example, in Deer Lake that she has to get out of the chair, hold on to a rail while I move a chair down three stairs, get helped stepping down and then get back into her chair. When we have pulled that off, we can get to a small beach where she can enjoy all the wonders of a lovely strip of nature. This goal we have achieved.
By the time Mom was ready to come home– and she made it just under six weeks later– I was desperate to get her back here, and not just because I missed her (though, I can happily say that I did, which is something that you can’t have if you don’t get to know your loved one as they are now, rather than before the onset of dangerous dementia). I was desperate for a daily purpose, I wanted the blinding level of work far more than the blank slate. I’ll take the burnout over the fade away every time.
This Fall, as it started to set in, I was relatively content about having Mom here for the Winter– but still fearful, as depression can really kick your ass far more when you have no outdoors time to speak of. I received a huge boost by having her home, but the depression I got into because of her injury combined with the winter and started to make it worse.
I’ve been caregiving now for 4 and a half years. It truly does change you, but not as much as I thought. But in recent months– the last three, really– the life I put on pause has been rumbling hard inside my soul. While I’ve never come close to regretting any decision I’ve made to stand solidly behind her when she needs it, I had moments– several of them, and often– where the conviction dropped from 99.95% to about 80% or so, as Christmas music played by her hands has a special gift to me I am grateful for, but much else is still painfully empty. Winter this year, so I believed going into the Fall, would be better as Mom and I have a routine (as much as she can, and I’m so much more able to move with her new winds), and that in itself creates a warmth to our home.
But, and I would not have guessed this myself, having a few weeks of feeling both guilty and useless while she recovered from an injury was far, far more damaging than just the passing of cold weather ever would be. When she returned home, my mainline slow pulse through life had reduced further in spirit, yet my body was stronger from setting my own sleep patterns.
Her reappearance at home was so highly anticipated– yes, I love my mother and I had been missing her, despite everything– but it was more than that. I had not allowed my brain or my heart to move away from “I am a caregiver” as my primary current self-perception. I wasn’t care-giving, and getting Mom home became as important to my health as it did hers. This was hard, but it was also a good revelation: What I am doing is interwoven with myself in this moment. As far as making the home happy, helping Mom do things and be as vital as she can, loving these cats harder than ever, all of these things are just the riverbanks to the flow of our lives.
In completely different modes I have worked towards building stronger bonds between Donna and both her and my lovely cats. Mollie, her partner of 12 years now (adopted in Feb 07), has learned that Mom will pull out treats if she lands at her side– despite my own lack of organization often, I made a point of being focused on never allowing the cat treats to move from where Mom can reach them. This has resulted in my own little monster, Baisol, responding enthusiastically to the shake of the treat jar and them finally getting beyond “co habitation” in an apartment, to friends and family.
Winter is made for survival strategies. Everything from memorizing TV schedules to making certain to get out at least once in awhile (worried about cost, I successfully gambled on getting us a few cheap hockey tickets– one a month during the winter– so we always had something that was an outing of joy for her and for me to look forward to, if only a few weeks away). This is more problematic than at first glance– Mom is not good for a restaurant, for example– options in the cold season are few.
An average day when it is snowing and Mom is home with me involves getting up slowly, & a visit from me to her bedside around 9am to make sure everything is okay. Then, after often helping her get into ‘lounging around’ clothes I help her with a half-coffee, half-boost to wake up while she and Mollie hang out watching Perry Mason. If we are getting no services for help that day, we do lunch, a walk downstairs to get her exercise and outside on the edge of snow by going by the apartment building rec room. After this, back home and TV– and eventually about an hour of piano. Even getting her on a short walk with me to another part of the building for a change of pace can help a lot– for both of us.
Now, as the sun beams down on Vancouver, and the snow is almost melted, visions for the following months reappear, as does my deep down inside smile. Mom is actually doing very well in recent weeks– so much so (dressing herself correctly, getting short term memory right, giving me and others random directions while out in the city that are also correct, never going the wrong way when heading to the washroom, etc) I am almost afraid of it because it will inevitably “correct” itself very soon after.
If I am to do this for some– or any more– years yet, I need more to get through November to April. I feel dangerously unwell often, burnt, more isolated, unable to do much more than tread water. We don’t drown, though. And months where I can go with her outside– where both of us doing things together doesn’t feel or actually end up half as cut out of society as in the Winter– that is what I clutch onto hard and tight, not being Catholic.
The way depression works in the Winter essentially makes maintaining the work of structured writing for Donna’s Lessons almost impossible. Carrying guilt about a self-directed project was something I simply had to reject out of hand. Self-defence makes it so. But as we move forward this year, following the sun on this journey with no set horizon, the shadows are shorter and the days are getting longer. So too is my desire to share them.