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Advocates Christine Thelker © 2020 Dementia For This I Am Grateful Living well with Dementia Silver Linings Stress

Managing during a time of a Pandemic

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I am extremely isolated these days, partly because I’ve become more isolated and being in solitude over the past few years, that became a real thing not this fall but the fall before, there was a day that forever stays etched in my mind, and from that day on friendships vanished, others took a noticeable hit.

Maybe people think I wouldn’t notice the change, but I like most with dementia feels things at an unbelievably deep level, our intuition and our senses are very acute.

So I know the day it all changed, and I have learnt to come to be ok with it. The pandemic brought about a whole new level of isolation, lock down happened , I spent the better part of the last nine months being sick, once things opened up again, I still was not comfortable to be out and about, only going for necessities,

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I loved having social distanced coffees at the park, that was always a treat and so enjoyed those visits. People bubbles expanded, mine did not, my bubble is less than six, I would be hard pressed to count up to six who are part of my bubble. Am I being overly cautious?

Perhaps I am but after getting sick in March, laying in bed for weeks, and for the next nine months having my body endure what I call intermittent attacks on it, my lungs, my kidneys, my liver, my heart, my skin, it’s been unending, a few good days or even a week here and there but overall nine months of being unwell, spending more time in bed than out, at times not being able to leave my building because the stairs were unmanageable, and on the days I could somedays only managing to walk a half a block, this from me the walker, miles and miles everyday. Fighting huge amounts of inflammation throughout my body, fatigue that makes my fatigue from dementia seem like a cake walk and believe me it is anything but.

Overly cautious?,maybe, but my health can’t take to many more hits, is or was it covid or not? I don’t know if many people will ever have correct answers, testing not done in early days, not accurate enough testing, to many unknowns. I will take part in a trial when it starts here, but even antibody testing is not fool proof, the latest is that it may show you have antibodies to covid, but there is now more than one strain, so antibodies don’t necessarily mean you are safe, and they don’t know if you in fact can’t contract more than once.

So overly cautious maybe to some it would seem that way, but for me I fight hard to stay at the level I am because I live with Dementia (although declines is happening), and i to am aware of that. I am fighting hard to not be swallowed up by my illness, to try to maintain some quality of life for a couple more years, so if I fight that hard to have that living with my dementia why then would I not fight that hard to protect myself from COVID-19.

I know there are many who believe in conspiracy theories, I know there is many who think they aren’t going to follow the rules. I wrestle with understanding it, wearing a mask is a simple thing it’s a very small inconvenient thing, but it’s something we can do if not for ourselves for others, I wear mine because I don’t want to be responsible to get anyone sick, I don’t want anyone to go through my last nine months or worse, and for so many it’s far far worse. My heart breaks for the baby who in the very province I live in was brought into the world by emergency c section, because the young mother was having to be placed on a ventilator, and not even aware that her baby is born and healthy, and the hardship on her spouse and family. I know some people can’t take it serious until it becomes something that effects them or theirs. I know everyone is entitled to their own thoughts and feelings on the matter. I have always thought of others first and that is still true today, and I can respect others thoughts and opinions.

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My only hope is that we can all think about our others enough to all do our part, if we all do the things we know we can to take care of ourselves and our families, and yes this means doing things differently, thinking outside the box, getting creative, then we can get through this, but if we don’t if we all act like selfish and entitled spoiled peoples then the collateral damage may be more than you really wanted to pay.
I spend my days with my little dog ( Pheobe), I am so grateful I have her, she is great company and brings me great joy. I spend time cleaning drawers and cupboards, I’ve upholstered some pieces of furniture, I’m going to try to make some cushions, I only watch snippets of news, so that I keep my mental health in check, I socialize via a video calks and zoom and phone chats, with those who can and want to maintain relationships. I stay busy with advocating, working with research groups.

I learnt how to think outside the box while trying to form and build a life while living with my dementia, so maybe I need to be grateful for that, while I watch so many struggle, because they have yet to learn how to focus on what they can still do instead of what they may not be able too during this pandemic, for many the things they can’t do will be for the short term, months perhaps even a year or so, but for many of us we already have had to make those changes but for us they are permanent.
I hope everyone can find a way to stay well, stay safe, and be grateful for all that we still have.

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Christine Thelker © 2020 Dementia Event Stress

Feeling for Friends in uncertain times

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I live in Canada, but I have many friends to the south of me, many friends that live in the USA. Many people here in Canada have connections to people in the USA, and for most even if they aren’t connected they are watching today. Canadians have always paid attention to what’s happening south of us because we now what happens there impacts us here.
But more than that this time we are watching and worrying because of the all to real fear of civil unrest or even civil war, depending on how this election unfolds.
I won’t weigh in on the political aspect, per say, but I will say it has caused me to become somewhat dismayed and disappointed in humans. I cannot wrap my head around the fact that people get so entrenched ( brainwashed if you will ), that they will behave in manners that are unthinkable to me.

Oh I believe in the right to protest ( peacefully), I believe in using our voice for change, but when we become so entrenched in basically I will call it right or left, that we loose our ability to think and behave first and foremost as a good and decent human being, then we have truly lost something. I have watched grown men and woman talk and behave in ways that all I can think is dear god I hope they aren’t raising children.

The unrest is frightening for those of us watching, if you look back at history all great countries fall, is this one of those times? I worry about my friends and their families they are good, kind, hardworking people, they have the stress of a pandemic that is out of control there, and they have the election.
I was brought up in a time when we didn’t discuss politics, you listened you learnt and you decided who you would vote for and you quietly went to the polls and cast your vote. Most husbands and wife’s didn’t even discuss it, they respected the right for them to each vote on their own, they respected the sanctity of their marriage, so it was a topic that was off the table. I after watching the behaviour of people who taught themselves as “ good people”, am wishing that was still the way it was. That people went about their lives being good and decent humans, who went and voted on voting day, knowing if the vote didn’t go the way they hoped they would have the chance to change it in a few years and then they got back to the business of being good decent humans.
They say things always get worse before they get better, perhaps that’s true, they say whatever happens south of us is going to have a big impact on us, political parties rise and fall, and I just hope and pray that it doesn’t create in us the inability to be decent human beings above all else.
So to all my truly wonderful friends south of the border know we are watching, we are thinking of you, we are praying decency wins.

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Christine Thelker © 2020 Dementia For This I Am Grateful Silver Linings Stress

Finding the Silver Lining

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Sometimes we get buried trying to stay afloat when our brains are fighting the constant fatigue and the brain fog sets in, sometimes we have to not fight it and go to bed, its self-care, its frustrating, but we learn that if we keep pushing we may end up doing more harm to ourselves and then recovery is even longer.

These days, I think about so many who are struggling on many different levels. The world is a different place right now, for all of us whether we have dementia or not. As we go through unprecedented times with Covid 19 and all that it entails, as we see very abnormal weather patterns affecting the world, as we see our local and global economies changing, its at times hard to look for and find the silver linings. Especially given the fact that life doesn’t stop, people still get sick, get diagnosed, wait for surgeries and procedures. People still have to put food on the tables. Yes life is still happening, but the silver linings are still there, we just have to focus more on them than the hard stuff. We will manage the hard stuff, it won’t be easy, we at times will feel like giving in and giving up, but we in the end will come through the other side.

What we can hope for is that as our new world emerges, its a little softer, a little kinder, that we see those silver linings and grasp onto them. The simple things, like being able to hug your children, to go for a walk or hike in the woods, go for a bike ride, enjoy the sound of children’s laughter, enjoy each other’s company. Take more time to help each other, help the neighbors, check-in on those you may not have seen or talked to in a while.

Our world has been turned upside down, everyone lives with a level of fear of the unknown, so acknowledge that we are all a little more on edge, give each other a little more grace and forgiveness, patience, and understanding. Something as simple as a warm hello can make the difference in someone’s day, its true that kindness matters. I talk to many and most if not all are feeling just a little off, some can’t identify why, others feel like they are on such unsteady ground, they don’t know how to maneuver through it.

Staying connected is harder with social distancing, but we should still be reaching out, have a social distance coffee in the park, don’t be afraid to open up and share the fears worries, and concerns.

For those of us with Dementia, who by nature of the illness ( although I don’t believe that, I believe it is by nature of people choosing to make it ok, to walk away, to not work to include then to accept and understand the person living with dementia) (but that’s for another blog), end up being more isolated than many of us would choose. Our support groups become increasingly where we feel connected, and understood, where we don’t have to work so hard to be, it was said at one of our meetings today by someone that they don’t want talk to other people anymore because they except me to be the way I was before and I’m not, so I’d rather just be here where everyone excepts me how I am today. That’s a big statement it speaks volumes to how people with dementia feel. it’s sad, however at the same time but not at all surprising. Those of us that do a lot of advocating are often heard to say ” I have Dementia, but I am not Stupid”. So our get-togethers with our friends and colleagues whether they are on zoom, video calls, messenger calls, video calls, are extremely important. We need the connection. The loss of our ability to go to conferences and to work with the various Research groups we work, which provided us stimulation, purpose, and social interaction all ceased, so our actual social interaction ( face to face) for many of us is very very limited.

We must keep striving to stay connected during these coming months, even though things are challenging us. If there’s one thing that those of us living with dementia are good at its adapting. And Adapting to an ever-changing world at the moment doesn’t have to mean bleak and despair, we can and should look to the silver linings, things like our DAI online support groups, and webinars and most are learning zoom, we have been using it for many things for a long time. It’s one instance where we don’t have to adapt we are already there. Silver linings just look they are there.

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Christine Thelker © 2020 Dementia Stress

A restart today would be good

Well this day which started out on such a positive and uplifting start, turned rather quickly this afternoon. I was just finished on a zoom meeting at 2 pm when I headed out to go to Dr. Peter Henley Office, to deliver a book to him. He has been a great support and wanted a copy of the book. I was not even a full block from home sitting at the stop sign waiting for traffic to clear when out of no where one of our well known bicycle people in town, no helmet, they are running in and out of traffic constantly, ran into the rear passenger side of my car sending her careening to the drivers side of my car onto the pavement, I threw my car into park, she laid there dazed and confused, I called 911, suddenly out of no where a guy appeared had her at the side of the walkway, she wanted to leave I said no, you could tell her arm and leg were injured I was worried about head injury, she didn’t want police involved, she didn’t want paramedics, fire arrived first ambulance next, then police, she kept refusing help, the fellow had suddenly became her husband, then well no someone she was seeing, she still refused help, kept telling police, she knew she was 100% at fault, told fire and ambulance same thing, kept saying I’ll pay for damages, finally they got her name and phone number ( very likely false), said she had no ID, still refusing help, hanging onto her pack back for dear life. Police took pictures of damage to my car, the fellow and his wife who were driving by at the time, came back around gave their names for witnesses, I couldn’t pull out at the time because they were coming into the intersection, so they saw it all, this all took a very long time, police were very kind asking and making sure I was alright, they wrote the police file number and all information for me, I then spent 1/2 on the phone with ICBC, I will have to pay my own deductible because they likely won’t be able to get money from the bicycle person, my appointment to have them look at my car is next Friday the 11th, I eventually feeling 100% frazzled get the book to Dr. Henley, back home, I’m sitting trying to deal with the immense headache this has caused, an email comes saying my amazon package has been delivered except, I don’t have it, on the phone with the delivery company, oh he delivered it to the wrong place, they will try to retrieve it, if not amazon will replace it,, my head is pounding. I want to go back to the early part of the day, where I did a great zoom with Emma and Diana allowing them to interview me for a research project and then a lovely visit from my physiotherapist, a great coffee and catch up. And then the day went off the rails. It’s very upsetting, you never want to see anyone hurt, police were very reassuring, but it still unnerves you. I’m totally u settled at the moment. Hoping this doesn’t trigger an event and effect me and m6 dementia partner, we’ve been humming along so nicely for a few weeks. Today I feel like crying.

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Christine Thelker © 2020 Dementia Stress

Anxiety/ Covid and Haircuts

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I haven’t had a haircut since late January or early February. I’m scheduled to have a haircut this morning. I’m amazed at the anxiety this one seemingly small event has caused me the last few days. I don’t normally deal with anxiety but this has definitely created it. Along.

With lightening bolts blasting through my brain again for the last several days, and today it’s impacted my vision again, Anxiety and Stress create difficulties for people with dementia.

I’m hoping it will all settle out again after I get this darn haircut done. I’m wondering if it’s really worth what I’ve been going through though. My hair is just getting long enough to wear pulled up and back. I have been very careful since the covid 19 pandemic started, I’m not sure why the hairdresser is one thing that creates so much anxiety and other than that the pandemic has actually created some things that have made life easier for me, like special early morning shopping hour, it’s quiet, there isn’t a lot of other stimuli coming at me, the streets were quieter, less traffic, although the summer months have been extremely busy, and because by nature of the illness of dementia I live a more isolated life, I haven’t found it as difficult to manage through it as some others who are used to living on the fast turning wheel of life, since that changed with my diagnosis I live a more peaceful calm and serene life.

So covid for me has been manageable, I do all I can to protect myself, I find ways to do things I want to do in a safe manner, and sometimes we have to think outside the box to do it. I’ve spend an enormous amount of time in nature, where I thrive. And yet anxiety over load thinking about a haircut. Even that, I’ve picked a small shop where I can be first in, still anxiety prevails, I’m doing what I can to protect myself, I’ll wear my N95 mask.

Oh I’ll be glad to have this over with, I better go get ready.