I’m thrilled to share this podcast with David Harvey, which aired yesterday. David has an incredible ability to bring about great perspectives and thought provoking questions.
I so enjoyed this conversation it brought me back to why I started writing, it reminded of many aspects, triggered memories. It left me feeling like I am exactly where I am meant to be doing exactly what I’m meant to do. It again reminded me that although life doesn’t go as we planned or hoped doesn’t mean we can’t have a good life with what we are given. Feeling very grateful Thank you David for your support and encouragement. You are a gift to us all.
It’s funny how so often I don’t even realize what I have forgotten, and how surprised I am by that. You would think that after six years it wouldn’t surprise me but it does, but the fact is I’ve forgotten what I forgot a lot of the time. Then someone will say something, or I will see something that will trigger a forgotten piece and it comes flashing into my mind, like the gate of dam was just opened and the water came rushing in, so too does that forgotten piece, that moment in time or that event, and along with it an emotional response.
The emotional response at times is almost child like very kiddy with excitement at the revelation, it can bring about a feeling of warmth and comfort, it can also bring about tears and a deep feeling of grief. Sometimes it brings such joy and a sense of contentment. This explains in my opinion why even has people progress with their dementia they would exhibit different behaviours and responses. So often people with dementia are “ purple dotted” when in hospital or long term care when in fact they are not they are just responding to triggers and memories. I for sure would or will be purple dotted, because I am totally a person who does things and responds from an emotional place. Some respond from a very logical place, some emotional, we are all different, but we all respond. Some people will act instantly when put in a fearful situation, others will freeze, but all will have a response. So although at times forgetting things like appointments, meetings, taking medications may be a frustration, I have learnt to live with them , shrug my shoulders, shake my head, laugh at myself, and say well I’ll try for the next time. It used to trigger such a level of frustration that it actually caused me anger and anxiety, the anger was at myself for being forgetful in the first place, instead of being kind and forgiving to myself because I do have and live with dementia, still too often putting to high of expectations on myself, the anxiety coming from fear, that things are getting worse, that my illness is progressing. Yet that is the expected, the progression, yet somehow because we put these expectations on ourselves, because we allow the fear to develop into anxiety we end up with unpleasant and often unexpected responses to situations. Perhaps during later stages when we no longer can rationalize these things, yet the responses are still there, it again explains a lot of behaviours that are mislabeled and mis treated with medications. I am still in early enough stages ( that’s my opinion), people on the outside may have a different view, that I monitor ( or try too), myself closely, I pay a great deal of attention to how I am responding to things. I am working on learning the importance of laughing at myself, replacing fear and anxiety with humour and laughter. I don’t want other people to laugh at me or make fun of me or my missteps because of my illness, that is very belittling. But having someone join me, and be able to share in the silliness of something that is anything but makes it bearable.
The other day a friend came and took me for a drive and out for the day because I have not been feeling well enough to go on my own, we were driving and talking and something struck me about how surprised I am that I keep forgetting I forget, we both ended up having great fit of laughter over it, it was a great shared moment. I can and do know the difference between the shared experience and the mocking and judgmental moments or the “ oh I do that all the time statements which while well intentioned are anything but.
Learning to live with Dementia, learning to find the new mechanisms to adapt, not only to how we do things but how we respond as well. Who said people with dementia aren’t capable anymore, seems to me that being able to adapt in those ways debunks that theory.
Am I going to be added to the list of Covid 19 “ Long Hauler” list, it’s hard to say,, Doctors are scrambling to deal with so many unknowns during this pandemic. How many people like me went without being tested because in the beginning testing was only being done on health care workers etc. We went untested for a month or more, the testing done at the point was well pointless. I got sick on March 14, 9 months later, here we are in November and I have been hit with wave after wave of strange illness, I’ve struggled, I’ve been hospitalized a number of times. Inflammation in my system a huge issue, carbon Dioxide levels to high, skin infections, almost no part of my body has left untouched.
The doctors are trying, they can’t say with certainty that I had covid back in the beginning, they can’t say I didn’t. I sit and wonder how many others fall into that category. We can’t blame the doctors for so many unknowns, they don’t have all the answers this is something new, and just like with my dementia diagnosis I have to do my part to help my doctors help me. I have to read new reports and finding the doctors are simply to busy to keep up with it all the data coming in, after all they still have all the other duties being a doctor entails. So I once again have become my lab rat, researching, reading, taking notes, to keep track build a graph so to speak.
All my illness cannot be blamed on my Dementia, not all that has been attacking me can be blamed on my complications, my vascular system etc. Last Saturday night, one of the doctors called me at 630 at night, saying they didn’t like something in one of my tests, something growing ( a bug/ infection) that they weren’t sure what it was, they gave me very powerful medications to eradicate it,
it doesn’t matter to me what the tests results were or weren’t, for one thing to many false tests especially in the early days. what matters to me is that I do all I can to help myself. I don’t wish this on anyone, it’s relentless, I’ve had about 4/5 weeks that I could classify has feeling really good in 9 months, I am striving to fuel my body with has much good stuff as I can in my bid for a good run. I keep being told it’s going to take time, I’ve been hearing that since March, and given that I’m in year six of my journey with Dementia, time is the one thing I don’t have a lot of to spare. Each day since the massive three days of medication last Saturday night, I am feeling better and stronger. I am holding my breath hoping this is finally the thing that stops all these attacks on my system. This also means I am being extra cautious, wether you believe covid is as bad as they say, or don’t believe in at all, all I can say is I wish this on no one. The more the numbers climb, the more I isolate myself, and I have since the day we started in March been following and taking all precautions, I know I’m high risk and I know because of my dementia I would not be given the same care as someone without Dementia, I’m already terminal, so I can live with that, but at the same time I can fight hard to get myself a couple more years and be able to have a quality of life. I’m not done yet.
Yesterday my doctor called, back to the lab for more tests, sometimes it feels like my life is about appointments, But this is life for many with Dementia, so many underlying health matters. It’s a tangled mess, but at least they try. I will be happy when antibody testing can be done, because I have been sick since March, a few good weeks in that time but more time being sick, feeling like my body is attacking itself, and sometimes I ponder how much is simply being blamed on my dementia because that’s always rather easy answer. However I do have good doctors and my GP I have complete trust in.
so what does that have to do with finding my happy, well I could become despondent or depressed feeling sick so much, but I don’t because I focus on the good moments in the day. I still attend meetings, still present speeches and contribute to the research groups I am part of. I’ve been doing a “ one thing a day” for a while, as my fatigue means my ability to maintain enough energy to do more is not there. But I celebrate what I do manage, and yes I am human and sometimes every once in a while, I get angry, mad, frustrated, because there is much I want to do but my health is hindering me.
So finding my happy is extremely important, and it’s important for everyone, especially during times like those we live in, so much uncertainty for people I am fortunate my mother instilled in me from the time I was a tiny girl that when everything feels out of sync, when you are having times of troubled waters, you need to keep busy. Keep your hands busy, it will quiet your mind. That’s how you find your happy, get busy doing something, do something that has some normalcy to it. Teach yourself something new, something as simple as cleaning out a drawer or closet gives a sense of satisfaction and brings calm, we feel good when we complete something.
So yesterday, I tackled a project, I recovered phoebes window seat, another small bench, a chair and foot stool, and have cut out cushion covers to coordinate, I’m going to change my space around, make it a happy space for winter. This brings me to that happy place.
So even though I don’t feel well, and some days are worst than others I’m always finding ways to bring joy to my life, and it may not be perfect but I did it, that’s what matters. So during these days when everything around you feels uncertain, and I have to tell you those of us living with Dementia spend most days feel like we are walking on quick sand because everything is uncertain for us all the time, but we are always striving* to find our happy, so get busy and you can too.
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.
For most Halloween like many other things, this year are different, of course, some people will insist that they have Halloween just like any other, others will be creative and inventive. It makes me stop and think about all the people who in the past didn’t even have time to worry about whether Christmas or Halloween or birthday parties or any other of our multitude of holidays we celebrate would even happen.
I think about the people like my mom who grew up during the Second World War in Germany, with bombs dropping on her house, about them fleeing for their lives, about them scrounging and yes even stealing food so they wouldn’t starve. I think about all she endured during the Great Depression. the sacrifices she made fleeing to England and then Canada.
So I don’t believe that I have the right to complain or feel sorry for myself because I am a little inconvenienced, by wearing a mask, by changing how we do or don’t do a holiday or celebration.
It’s not that I don’t want to see everyone doing all those things that they love, but somehow we, (myself included), have somehow become a society that feels entitled. We have yet to endure real true hardships in comparison to our parents and grandparents, although our homeless population that continues to grow is feeling those hardships. the other day I had a lady say to me that she doesn’t care where they put the homeless as long as its not her neighborhood, that statement haunts me, have we truly become that kind of society, we don’t care who else it impacts as long as it’s not us? There is very little that causes me anxiety, but when I think about things like that it does. It makes me afraid of what is coming.
We have become unable to cope, overstressed, and yet the important things, like having a roof over our heads and the ability to go to the store and buy groceries for our families are taken for granted and we are mad and angry that we are inconvenienced.
Yet the very people who came to this country, to give us better lives, that made this country great, they are the ones really impacted and feeling the worst parts of this pandemic, because we have locked them up in institutions, human warehouses, that we call Long Term Care Homes, absolutely nothing homey about them, nothing that provides real quality of life and we justified it, we made it ok because we can’t and won’t sacrifice to look after our own. So they are the ones truly paying the price of this pandemic, in fact, they are paying the ultimate price, DEATH.
Seems harsh I know, but it is how I feel about things. I don’t expect everyone to agree with me, it’s my opinion and my feelings. It is a very real and frightening reality for me, my health is declining, I have dementia. We have and know that those with Dementia in care are the ones who have and are enduring the worst of what the pandemic is showcasing. So I have a right to how I feel, as we each do, for me it’s all sitting close to home given my health challenges. For me, it’s all too real. I was in the hospital again last week, then called back, then last night Halloween night, at 630 pm, the phone rings, its a doctor at the hospital, concerned about one of the tests they ran, and they want me to go right away and get a prescription, it can’t wait, and my doctor will follow up, my whole system is struggling, I have vascular Dementia, my vascular system is creating many issues within my body. when Doctors are phoning on a Saturday night, you pay attention.
I do all I can to help myself and help them help me and I am so grateful for how hard they try. But that still leaves me having to think about all those things like where and what happens when I need more help, that’s something that I’m facing more each day, and then there’s the whole reality of people living with dementia who end up in care, and the lack of small homes within communities, versus institutions. People look at me as it looks as though in others’ eyes “I’m doing great”, the reality is things are changing just not in ways most could see. So yes how people are responding and behaving during these ” difficult times”, impacts me in many ways.
The other thing that impacts me at this time of year is the time change, falling behind an hour. I change my clocks or most of them before I go to bed, I wake up though and I think did I change my clocks, is this the right time, it confuses me, it creates stress I have to figure out where I actually am, in reference to, day and time.
It also impacts my sleep patterns which is already a struggle, so I wish, I wish, they would just leave the time alone, spring ahead this spring, and leave it alone from there on in, my body clock adapts to seasons and differences in daylight, etc on its own. Leaving time alone is one small thing that can make a big impact on life for people with Dementia.
Today the above event was announced, today I did a 45 minute interview with David Harvey of Dementia Dialogues, that will air on November 9th. Yesterday my neighbors called an ambulance and I spend the day in hospital having X-rays, Scans of my head, Ivs running, multitude of medications given, many tests run, you see I’ve been unwell since the 29th of September, yesterday another event ( that’s what I call them, because was it a true TIA, one of the many silent strokes I suffer, or a combination, does it matter, a major stroke didn’t happen because of quick responses, today my internist called I have to be at cardio/ pulmonary at the hospital at 815. I’m hoping to be home in time for a 10 am meeting with the Canadian Consortium of Neurodegenerative on Aging ( CCNA). I’ve missed a lot of things over the last month, that never makes me feel good, but I still have been pulling up my big girl panties, and try to manage one thing a day. That’s hard for me, it’s hard for many of us with dementia when our brain and bodies aren’t letting us do all the things we want and hope to, or to do them to the caliber we want from ourselves. The others I have met with dementia, the other advocates I have come to know all seem to put high expectations on ourselves. We truly need to learn to applaud ourselves more for how much we really do get done. We also need to allow ourselves down time when we need it, after all we do live with a terminal illness.
The thing is people like Noelannah Neubauer and Janet Douglas who have worked so hard to put the upcoming event together while I was and am doing all I can to turn the corner once again in my dementia journey. I’m battling for another decent run of functioning.
People like David Harvey, people like Kelly here in Vernon, who is putting together a similar event on December 15th, more details to come later, these people who not only support my efforts to make a difference for people living with dementia, they inspire me to keep going.
Having a reason to keep pushing forward is important, it’s important for everyone and for many of living with dementia having that purpose pulls us through the dark and hard days. It at times seems that it would be easier to give in to our illness, but feeling that way that doesn’t feel good, so it’s not an option not yet any ways. So for now I’ll spend what energy I have working with my much loved Colleague Kate Swaffer and DAI, I’ll continue to work with CCNA, with Alzheimer’s Disease International, with TREC, and with Agewell, and others, in an effort to see real change.
I will continue to do all I can to look after myself as best I can, and I will be grateful to neighbors who check on, to friends that drop and run to do what they can when I endure another downturn or hospital visit.
I will be grateful to those who are giving of themselves to help and give of themselves so that I can continue to use my voice.
I hope you’ll join us on November 12, for what will be an enlightening and uplifting event.
I was reminded yesterday during a conversation that sometimes we are fighting so hard for each good day or moment, that we are always looking for the silver linings, looking for the things we have to be grateful for. Yet somehow in all of that the one thing that I have forgotten to acknowledge and give thanks for is my body.
Yes, this broken, often unwell piece of equipment, and I, like I am sure many others when giving thanks for things forget to give thanks to our bodies. For all that it manages, if we think about it, I may not be able to multi-task any longer, I may struggle with a lot of day to day things, but if I stop and look at how much my body has to multi-task still even though it’s broken and hurting, not only from the Dementia but all the other things many of us with dementia have that complicate things even more, like cerebral vascular disease, hypertension, a rare type of angina, and on and on it goes.
Amidst all of this, while struggling with the Dementia that is forging in my brain, the magnificent brain is still multitasking every single day, keeping all those parts running, and maybe they don’t run perfectly anymore but none the less it runs. It runs well enough that I can still sit here and write, it runs well enough that I somehow make it to meetings and give speeches, well enough that I managed to write a book.
Perhaps I miss appointments or get the days and times wrong, perhaps, I make more mistakes, perhaps I can no longer multi-task, but while I am not my body is. I have ( or my brain has) given me the tools to adapt and adjust my life to keep running, maybe not in the fashion it once did, but I am still here and I am still standing.
So should we not take the time when we are thinking of all the things to be grateful for when we are giving thanks for so many things, should we not be including thanks to our bodies. For it is in fact the very piece of us that is broken, our brain, our bodies, that somehow are still doing all the work, to allow us to still be here.
So today after a very short one day reprieve from pain as I am sitting waiting for my doctor’s appointment today, after another sleepless, exhausting night, trying to manage the pain, I will be saying a thank you to this body for allowing me another day. Another day that I can write, spread kindness, share joy, enjoy friends and family, yes today exhausted or not I am here because my body is deciding to keep running, maybe not on all cylinders but it’s running, and that’s a lot to be grateful for.
It’s been a bit since I’ve written, but I’ve had to give myself permission to scale back, to think differently than I normally do. It’s hard when we have conditioned ourselves to expect so much from ourselves, we can’t blame anyone else, we can’t blame society, we have taken it on. We have placed huge expectations on ourselves to complete everything we’ve felt necessary to do and attend. We would never put those expectations on anyone else yet we do it to ourselves.
Why I wonder do we tell others to take it easy, to look after themselves take all the time they need and then in the same breath berate ourselves for not managing to do it all or more.
We are driven, we are passionate, we want to feel like we are contributing to our lives to the lives of others to things that matter to us. Many of us with dementia often talk about how tired we are, but we keep pushing to show up, to support the others we care about, to help drive change that is long overdue, we sacrifice ourselves, our own well being, because we take our commitments serious, maybe because we are working so hard to get others to hear us and take us serious.
Often groups and organizations that are working to make things better for those with dementia, to include us, ( some use us), who talk about ensuring that changes happen to make things more dementia friendly, when in fact those very same organizations ask us to attend and participate expecting us to be up at unrealistic hours middle of the night, to make presentations, to participate in discussions, because they base the hours for themselves that work for them, ( they are paid ), they only participate during their working hours. But we who live with dementia and who we know how vital rest is to our rest is, to our cognitive well being, are asked to give of ourselves freely, to put our already challenged well being at further risk, by attending at unreasonable hours.
For use feel like we have no choice, if we want to be heard if we want to help make changes that actually impact us directly we have to be willing to be the sacrificial lamb so to speak. The one thing we must do then is give ourselves permission to ease up when and where we can. It’s hard not to keep high expectations on ourselves. I have learnt in this past year to do a one thing a day rule. This has come about because in the past year I’ve only actually had about two months where I have felt good. My health has been significantly challenged and continues to be today, many with dementia have many other health factors that come into play, does the dementia make them worse, or do they make the dementia worse, I am never sure and bounce back and forth on that. I do know though that my ability to keep my health stable becomes more difficult each passing day. so I have taught myself to be happy to make it and attend one meeting, or do one thing like clean put my spice cupboard, one thing a day, somedays I can’t manage that, but if I miss a meeting, if I miss a support group, I no longer berate myself, make myself feel worse. I remind myself that I do live with a terminal illness, that today I’ve done pretty well. Today I’m still here, I’m still smiling, I’m living only for today, and that’s enough. It’s important and maybe more so right know with everyone dealing with this underlying stress of living during this pandemic that we remind each other it’s ok to say not today, it’s ok to not put that extra pressure on ourselves. Give yourself permission and give those around you permission and encouragement to take care of self. That is truly how we will make it through these very turbulent times, and maybe just maybe on the other side of it, we will see the change we all know is long overdue. Maybe the silver lining is that through it all we continue to learn and grow, despite living with what is still previewed to be the worst possible illness to end up with, yes maybe the silver lining is that we indeed are living each moment much more than we are dying. Maybe the world could all learn if they did like us and lived like they were dying.