You may have noticed there was no blog post yesterday. As my facebook post explained, I was having a difficult day of my own, so there would be no posts or blog. Maybe in my sleep-deprived state I’ve forgotten one, but I believe that’s possibly the first time since the page started that that has happened.
I don’t have a lot of what I would call ‘bad days.’ And, if we can make use of what happened, we can convert it into a good day anyway. The past is always recoverable in that way. So let’s do that. And we can start by providing you with some context of what it is like to be me.
The constant issues I face are things like the ‘sundowning’ effect, where Dad becomes more obstinate and uncooperative after about 2pm, and Mom gets on on a spin where she’ll be in constant motion, always opening every drawer or door, including the fridge.
In each case, she will take things out and hide them, like all of the spatulas. Or she’ll take all the knives and hide them in the sleeves of one of her 300 outfits. Or she’ll take meat from the fridge, (or my phone; or the TV remotes; or the mail.), and she’ll hide it under some clothes in Dad’s dresser, or in the pages of a book or under the mattress.
Mom gets so confused she’ll even hide a dirty diaper in a kitchen cupboard that will then need a complete and thorough cleaning. Or she’ll take everything off the hangers in her closet, or empty Dad’s drawers so you have to refold all the clothes. Each of these things can result in hours of cleaning, or re-hanging, or re-folding.
These things are routine and can happen 10X in a day. Plus, bathroom help can eat up five hours of a day. Then there’s tons of laundry, meal prep, plus entertaining them so they have quality of life. And they cannot be left alone for a moment between 5pm and 9pm because that is when the sundowning effect is strongest.
Simply put: dementia is a descending disease. The people get harder to care for the longer it lasts. Add the stress and isolation of COVID on all three of us, and that is already quite challenging. Plus it also severely limits the amount of time I can spend with clients even without COVID, let alone with it.
That might not be an issue for some. But when my parents asked me to help them stay in their home, as a single person, I had to do some calculations as to what I could afford. The best guess was there was a 90% chance they would not live past five years. I could afford that, and so I agreed to their care.
Despite being at year twelve, it’s not a decision I regret. But it is a very expensive thing to be someone who keeps a very serious promise like this one under the conditions COVID has left us in. But since that is who I am, I’ll neither hate myself for making the promise, nor hate the situation. My parents enjoyed all of the non-COVID parts of that extra seven years, and viruses are just a part of nature.
Obviously, in a situation like this one, the government support payments are really the only reason I can survive. Even then, I have gone backwards every month since the pandemic began. That issue recently got much more serious when my payments were cut off while I go through an audit to prove I am actually caring for my parents, and that I do qualify for the support payments.
Maybe the list of paperwork they requested seems easy to provide for the government, but it has been very difficult to organize with the extreme time and space limitations my parents place on me. Yesterday I learned that one document from the bank might take a week to produce. Meanwhile, savings have been wiped out, and utilities are being shut off, and things are quite bad.
Obviously, this is not the situation my parents intended to leave me in, and at my age it is a very risky situation for me. But it won’t change my commitment to my promise –I knew this could happen then. This was the risk. But I’m simply being me. And I accept me, even if there are sometimes downsides to what I feel is truly mine to do. We all do that in various ways. Just having kids means sacrificing huge parts of our lives.
Of course, even at the best of times, life always has some chance of things going haywire. So I’m just staying present and doing all I can. You never know what can turn out okay. And by being present and accepting, our reactions can include more wisdom, which increases our odds that things will go well.
The advantage in this approach is that I rarely have what I would call a ‘bad day.’ I’ve loved my life, even the ‘hard’ parts. So this is the proverbial ‘teachable moment’ that occurs thanks to dementia, plus some time in administration hell, where I was repeatedly given incorrect information by various authorities.
All of this left me feeling like a frazzle yesterday. I was physically exhausted by a week with too little sleep and too many skipped meals. And I was mentally tired of having to work so hard to prove I am who I really am. But I’m always looking for a positive and, by looking, I found one.
People have trouble asking for help. So it often helps if they see someone else model the behaviour. And it helps even more if we feel the other person is more capable than us. It makes our struggle seem more reasonable. And so I went onto social media and asked friends for help.
I simply explained how hard the day was, and that I felt ‘unseen.’ I’m sure many stay-at-home Moms know that feeling. I felt like a set of duties, obligations and responsibilities, but not a person. And so I asked friends if they would simply offer some nice comment or statement to raft me through the day until I could sleep and recharge.
People were awesome. They wrote really loving, kind things. And you know what I teach you: we can’t take in those positive thoughts without getting the biochemistry that goes with reading them. And so the thread really did make me feel much better. And it also helps show others that they too, can ask for help.
Often times we have support but don’t ask for it. But we should. For there to be unity in any community, we need to ensure that we add the communications, so that the unity can happen. People have to know we need them just as we need to know when they need us. People like being needed. It helps us feel strong.
Do not be afraid of being vulnerable. Absolutely every life will have several periods of extremes. Rather than using social media to mask or hide those moments, those are what we should share. Then basic human struggles would be normalized.
If kids really knew how much adults struggled, then, when they began struggling, they could understand that as being ‘normal,’ rather than hating themselves for not being a perfect. Not everything is a ‘problem’ that can be fixed. An awareness of that fact can change a child’s life pretty drastically.
There is no ‘fixing’ my situation other than getting this paperwork assembled and in, and the pandemic ending. And if that’s too late to ‘save’ me, then I simply must accept that. I would hardly be the first person who did their best and still failed. But, in the meantime, while I wait to see what happens, I can still feel better thanks to the compassion of others. I just have to be willing to ask for the help when I need it.
Our brains are all pre-wired for us to be animals that work together. So don’t get in the way of that nature by hiding your struggles. If you need love, be humble and ask for it. And if someone humbly asks us for compassion, it’s good for us to share it with them. Because it’s the connections that count. And people are amazing. Including you.
Have an awesome day everyone. I know I intend to. 😉
peace. s
A serious childhood brain injury lead Scott to spend his entire life meditating on the concepts of thought, consciousness, reality and identity. It made others as strange to him as he was to them. When he realized people were confused by their own over-thinking, Scott began teaching others to understand reality. He is currently CBC Radio Active’s Wellness Columnist, as well as a writer, speaker and mindfulness instructor based in Edmonton, AB where he still finds it strange to write about himself in the third person.