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

In A Funk

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Yup this is me today, in a funk, I woke this morning with questions going through my head, what am I waiting for? time is running out? What is stopping me from living where I want ? Doing what I want? I why do I always feel like I have to stay put? My head and my heart are in conflict. I am upended, ungrounded, although if I am totally honest I have not been grounded since my husband passed away in 2005, thats a long time to be ungrounded, or semi grounded, life happened, other things required my time and attention.

Suddenly with my dementia symptoms kicking up, with the loss of my sister, it’s like my system wants me to finally just do what is good for my soul. There is the piece of me that wants to be logical, just wait…but then wait…wait for what….no cure, no one coming to rescue me or look after me. Sometimes I worry that if I do what I want to do, then it will appear because of my dementia that I am making bad choices, so instead I sit here not making any…in other words, existing but not really living. I am not sad, well yes sad at the recent loss of my sister, but overall not sad, not unhappy, just don’t feel like I am really alive, nothing is appealing or exciting….except the one continuous thought…I need to live near the ocean. Whats stopping me? Fear, fear of what? Why? I have never let fear or anything else stop me in the past, is it because I am so careful maybe to careful because of my dementia? I think that plays a bigger role than I thought. Maybe the trying to figure out all the pieces required to make a move like that? In the past I could manage those things without a thought, but I no longer can so I know there would have to be a lot of planning. Do I go for six months and to a trial first? I have many things floating around. but one thing I do know is that I have to do something or my dementia will take over just sitting here, with nothing or no one to help me stay stimulated about being on planet earth. No sure if this will get published this is one of those blogs that feel almost too honest, likely more than most want to hear, or maybe even admit to themselves, guess when I get to the end I will now.

Other things that keep going through my head, it feels like meeting after meeting lately, the dementia world, the advocacy work, the landscape is changing, It’s almost like people with dementia are getting tired of talking about their dementia and that everyone else is tired of hearing about it, all the while little to no actionable change has happened. How did we get here? Where do we go from here, to ensure real difference is made for the lives of people living with Dementia, do we need a whole different approach? How do we let people living with no that they still have value and much to contribute when the world around them tells them and shows them something opposite? Everything we try to do comes down to $$$, when will life be about more than money? When will we finally realize there is no price tag on a human life?

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I am doing brain training exercises, maybe too many of them, every day, because I don’t like that my spelling and language skills are failing me so much., I have an exercise routine, I do and have learnt new mediation routines, as well as dance routine, making healthy healthy meals for myself, mostly planted based. Once the heat is over, I will be able to maybe ride my bike and do more walking. I miss being able to explore, it brought me great joy and much peace and contentment. It was something that happened often in the week.

Oh well, I suppose if I can find my brave again, when the lion inside decides to roar, then it will all be what its meant to be, changes will happen, for today, I am safe, I am still managing on my own, which I suspect I will till the end, because I am willing to fight so hard for it. So today I will give myself credit for fighting the good fight, and realize I don’t have to answer all the questions today, but that I can build the plan, and change it as often as needed.

This is my mid week rambling …. take care of you, in whatever fashion and whatever degree you need to.

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

As The Candle Dims

This is best way I could think of to describe things at the moment, like my candle is dimming, from within. It feels as though I am fading away. It’s that horrible time when you know and feel and understand changes happening within you and you are powerless to do anything about it. Some many things so noticeable to me, difficulty ( more recently increased difficulty), in social engagement abilities, being isolated for so long, in part due to the pandemic and other health issues that create situations where you can’t always take part as you would like too, partly due to the very nature of dementia itself. More challenges with language, speaking, spelling, recalling, all more of a challenge. And yes most of us have learnt to laugh at ourselves over many of these things a lot of the time, but make no mistake it is frightening, it is sad, to see and feel yourself slipping away, from who you were. So although we may have taught ourselves to show a brave face and put on a smile, don’t think for one minute this battle is not taking a toll on us not only cognitively but mentally and emotionally as well as physically. It’s a lot to accept, it is so much to try to always be re inventing how to do things, how to try to hang on to whatever pieces of yourself you can. The navigating and trying not to get sucked under by it and drown it is so damned exhausting. My candle feels very dim at the moment, I am hoping if my health stabilizes then maybe a new normal will be found, but at this point and time it almost feels like I am free falling, and there is no safety net.

So given all this and my brain feeling like its on fire, I decided no matter what I had to try to get myself into nature, I’ve been indoors because of the heat, it was cooler this am so I decided just go, I have always been so adventurous, never feared or worried about going out and about, but this morning, the fear crept in, the doubt in my own abilities, I had to fight through that to get myself out the door, I drove out to a campsite out in the country where friends are staying and stopped in for a 1/2 hour visit, they would of liked me to stay longer, but I couldn’t manage it, to many things going on, to many people popping in and out, in days gone by I would have spent the day, maybe longer, I would have enjoyed meeting people and chatting, today it was beyond what I or my brain could manage… I leave feeling very sad, that another step or progression is taking place. I drive down the country road, I stop by a little creek, I cry, I talk to my dog, I find myself thinking about the song Candle in the Wind by Elton John, not sure why, but there it was, and it made me realize it is because I feel like my candle is burning out. Its dimmned a lot in this last year. Bright, Bubbly, Adventurous Gypsy Spirited woman has been replaced, with unsure, unsteady, to the point that I never worried about going places on my own before but I do somehow know. However, while I was sitting there talking to my dog, amidst our tears, I am sure she cries with me much of the time, that I could not and would not let the monster within steal that core piece of me without a fight.

So I spend half the day driving, stopping, exploring. I think about how I need to get back to taking pictures, too looking for and collecting rocks, finding and enjoying creeks, rivers, streams, any thing water, I am very clearly in those moments out seeing very clearly all that is slipping.

I stopped and enquired a few places that I have thought I would always like to check out more thoroughly and gathered information, normally I would never do that more just go and do and figure it out as you go kinda gal, but this is me fighting hard to find new ways to maintain those pieces of me I so desperately want to hang on to for as long as I can.

So I have now decided that I must once a week at least make myself go and do some of those things, I have to find my “brave”again, find my spirit again. if my brain is robbing it from a certain area of my brain I have to find and make new pathways for it to become part of the now. Trying to keep the candle going. In this last week I have started new brain training programs, to try to relearn words and make them familiar once again, repetitive but necessary until it sticks. I have started new exercise programs and a new dance program, this fight is a fight any of us with Dementia never wanted, but boy do you learn from having it, about ourselves, our resilience, and our strong will to continue to have a quality of life, we learn, we challenge ourselves in ways and on levels few can understand. The temperatures were lovely and much cooler where I was, coming back home the temperature climbed rapidly the closer to home I got, so once again tucked in from heat, emotionally exhausted yet again, , I am not sure that this stage of dementia although many see it as you seem pretty good, or you are doing well, have any understanding of what its like to be aware of all the changes and not be able to manage it in the ways you want, but I was sorta proud of myself for navigating the realizations as I have, the day as I have, for not giving in and giving up. In closing I will share pictures of the day, that I stopped to get at different places and areas. It turned out to be a lovely drive, the cows were the crown on the day, because I love cows, and the cows today also brought something to light regarding changes in my dementia, so I was meant to be there, meant to cross paths with them.

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

What this means for me

Looking ahead I see another 10 day stretch of living my days between 4 am and 10 am, at least any outdoor things., which is ok but it definitely further isolates me. Somehow I am learning to embrace the isolation which is so far from how I lived in my pre dementia life. This morning I woke to a lovely email, from someone, thanking me for writing my blogs, one of my recent blogs really resonated for her. It did my heart good to know that in some small way by opening myself up and being vulnerable and real it can make a difference for someone. It is not always an easy thing to do, often people take issue with people who do just that, but I have learnt that for those people the issue around it has little to do with me and a whole lot to do with them. But when people reach out and share bits of themselves it is such an honour to read or hear their words, unbelievably humbling, and I am for ever grateful for they keep me humble, grounded in why I do what I do. It was a truly beautiful start to the day. Another nice start to the day an early phone call, followed by another phone chat in the afternoon. So all those things help ease the isolation. Getting busy working on upcoming events and conferences are another thing that really helps and looking forward to meeting more people I have only ever met on line at meetings and working groups, support groups. Making plans with someone for a lovely outing in Sept when the weather affords me more outdoor time, with a friend whom I haven’t had opportunity to spend time with for quite some time. These things are immeasurable in the value and quality they keep in my life. Isolation has made the effects of loss of my sister more intensified for myself. so without those other events it would be too much to bear. I think about all those people who didn’t have the ability to stay connected through various channels, and what that increased isolation during and since the pandemic has meant for them.

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I just realized as I was going to type something how much more Difficulty I am having spelling, I want to spell a word but trying to recall how or what that word looks like fails me, I very often have to use Siri to get words for me, I know the word but cannot figure out how to write it….changes, more changes, it’s been happening more and more frequently, oh well, just like losing days and hours, you learn to do what we here in dementia land call “ work arounds”, so more work arounds coming up, fascinating to me that our brains take away so many things but somehow teach us other ways to manage. The brain truly is a remarkable thing and even though it may be faulty in some various ways for many of us, it is still brilliant and fascinating, in all its brokenness.

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Wednesday is my day with my specialist at the hospital, so don’t know if that will result in any other changes, but I have great trust in him so will see what’s next, feeling deeply grateful for the care I receive given the crisis in health care these days. I am deeply appreciative of all the effort that goes into helping me stay well enough to continue to be on my own, I am sure if I didn’t also put in the work that situation could likely be very different.

I have forgotten what my original thought for writing today was, so I will just say that not everyday is bad, not are all good, some are downright horrible, but learning to laugh at ourselves, cry when we need to be dementiafried when that’s all we’ve got ( a term coined by my dear friend Dallas Dixon) and know that it’s all ok.

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

A Train Wreck, But What the Heck, Smile Anyways

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Sleep, or the lack of it plays a significant role in my day to day abilities and functioning, both cognitively and physically. For people with Dementia sleep issues, faulty internal clocks as I like to say, along with faulty wiring can make many days train wrecks. Todays train wreck came from not my own dementia or related health issues but from that of the “regular folk”, which by the way I wonder at times why so often we refer to people without dementia as regular folk. Who decides that any way, maybe we are the “ regular folk”, and they just haven’t realized it yet. Anyways back to today being a train wreck, it started last night, a big thunderstorm, lots of lightening and warm warm temperatures for evening, in fact at 12:30 this morning it was still 24 Celsius, or 75.2 Fahrenheit, much to warm for sleeping, even with my a/c unit and three fans running, my system can longer to heat. But again I’m off course, the temperature had little to do with today being a train wreck, rather it was goings on outside my building, which meant until the situation was resolved sleep was not to happen. So there is so many things that should and often are not considered for people with dementia, but making sure they are in an environment set for sleep, temperature, what’s right for them, do they have health related issues than when combined with some of these things like heat or perhaps cold, it can greatly impact their ability to function in a manner they would like to. Lack of sleep caused by outside elements such as noise, is also very much at play. Sleep is important for us all, it is vital for those of us living with dementia. Each day where my sleep is interrupted, this is why allowing people with dementia to wake and sleep at hours that their body/ brain wants and needs to is so important, but instead of creating environments that allow for that we drug people do they fit our schedules, so much unnecessary and harmful damage to people living with dementia especially in any care settings is being done.

I have had what I would call a pretty good day today regardless of being a train wreck, thoughts scattered, napping has been beneficial, and it will be early to bed for me today, which seems funny considering I am usually in bed by 6 pm, so today it could be as early as when I finish writing this.

I am hoping tonight the world goes quiet, so that sleep can come a little easier and although sleep is always fragmented it seems, and I am exhausted most of the time, it is more manageable when the outside elements don’t create further havoc.

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

Isolation

Today I am highlighting this topic and worthwhile listen, a big thank you to Celia Foster for sharing this. Oddly enough yesterday the conversation around isolation came to the forefront and admittedly I have been and am far too isolated and had to admit and give much thought to that yesterday and last night.

https://l.facebook.com/l.php?u=https%3A%2F%2Fnorthernontario.ctvnews.ca%2Fvideo%3FclipId%3D2413793%26fbclid%3DIwAR2N-J7NZvyu3NCXm41BzHncdnaaLwNLp1IiUzUQZw3w5fYVtXIZJQR9Jss&h=AT0duT-BN3giPn_70rdBlYZPDDD-yo-m2WK5IgNo_bd9wZoBhEPAvQb6Ic6hFStMkBHzVs26OISdFTiJKvgRAG1YL8MiY0OuELXuQfq7FyQEiqMjiq7BztBr6uIJ0zIpKL0SSKYmdmR1&s=1

It’s difficult to find an answer, especially if you also have to manage changing health conditions. About six months ago we received a letter from the government that we are no longer allowed to work or volunteer for more than 15 hours and or four consecutive months without losing our disability income, which is barely enough to live on at best. I don’t believe those in places making ridiculous policies has given any foresight into the fact that allowing someone with a disability to work as much and to what degree as they are able, not only allows them to afford to live a healthier life style, by providing extra income for better food and staples, it also saves money on the whole system, less mental health issues, less overall health challenges keeping people active and socialized is proven to have many benefits, those benefits far outweigh any negatives anyone has yet to be able to highlight for me. Many people with various disabilities have so much value they are able to contribute to their communities and to help themselves, again the more they can help themselves the less they have to rely on and take from the system. At a time when there is a shortage of workers, helping business and companies employ seniors and people with disabilities is a great way to lessen the burden on our over stressed housing and health care systems. Penalizing them, not allowing them to earn income or volunteer without fear makes sense. Yet it seems as though the people in positions of creating policies have to check in common sense and understanding at the door before they start their positions. Surely somewhere in amongst all these highly educated people someone most have enough common sense to see that they are creating these crisis with all the ridiculous policies. Most that I know want to be productive and busy to whatever degree they can to ensure their well being. It’s like living imprisoned without the walls.

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I am glad to see the recognition of the need for people to be socializing but then we need the policy makers to not hinder us from doing the things that are of benefit not only to ourselves but to our communities.

I am and will continue to try to figure out how to decrease the amount of time I spend isolated, there isn’t easy answers it seems. I will continue to advocate to make changes within our very broken system, I will use my voice until I no longer have one, or until they find a way to silence that as well.

There is little to no resources for me, in addition to the fact that I must do things at times of day that are best for me and not only cognitively but know also physically. Too much stimulation with my dementia is not good, balancing the noise of the world with trying to be engaged a juggling act, limiting the number of hours and size of events as well.

Life I have decided is exhausting.

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

The neverending waiting Game

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For so so many living with Dementia it seems as though we are always waiting, waiting for the fog to lift, waiting for the most recent health event, to settle out, waiting to adapt and adjust to yet another new “normal”. It’s like playing pinball, ( I wonder does anyone remember those pinball machines?) you pull the leaver the ball starts bouncing here there everywhere, if you don’t use the flappers just right game over. Dementia is sorta like that, people see the outside everything looks fine but on the inside, things are lighting up, one event triggers other things to act up, inflammation causes, blood flow issues, causes organ issues from the heart through to the liver, eyesight, balance coordination issues, all the while you look just fine, but internally a full scale pinball game is going on.

Which brings me to my next bit, I am not sure if you all have what we call “ The Most” medical paper here, you end up with your preference of the most choices for your level of care, it is listed on your medical information so if you end up hospitalized it’s what they go by. Even with health care directives, which I have a very clear, concise one, my doctor has it, I also have a DNR, but in the event something happens in the middle of the night, while I’m in a different town, no one has access to that unless it’s on my person, let’s face it we don’t strap those things too us as we go about our day. Below is an overview of what the most system is and what each level means for you. We are updating mine after lengthy meeting with my doctor yesterday, it’s time to bring mine to the next level, reviews of these things are so often put off, yet everyone should have them, everyone should do them, not just if you have a terminal illness, these are things that should be talked about and done and reviewed, just like we renew insurance plans, we review our housing needs, yet our health care reviews are so often left for another day. Leaving these things to another day, because we think we have time, we don’t, whether we have health issues or not, life is fleeting, it is not guaranteed, it is not promised. For those of us living with any type of terminal or progressive illness, we know full well the clock is running, time is winding down. Maybe we should all be living as though today is the last, maybe it would afford us all to be more forgiving, compassionate and understanding.

I also have the package shown below which sits in plain site for paramedics, it’s another step to ensure my care is what I want. I can see people cringe, I can hear the I don’t want to have to see that everyday, but the truth is mine sits there has for years now, I don’t even notice it anymore, it has made a number of trips to the hospital, but it has also been missed a couple times, so doing my MOST, ensures things will happen my way for me.

My good friend Janet and I were talking about this very thing, after I had spend a long appointment with my doctor yesterday. My system is struggling, yup look fine on the outside, tired but fine, you know the fine that brings people to say “ you don’t look like you have dementia”, that kind of fine….but I am not my vascular disease is progressively worsening, yup invisible to all, but playing havoc inside, effecting everything, yup no cure, no treatment, I will be like most others with dementia, I will die of events other than the dementia itself. I know, I know, most don’t want to talk about it, read about or even think about it, but sometimes we need to think about the hard things, if these types of things became part of learning, understanding growing up we could safe much stress for those we leave behind. Death is an eventual given, how much time, when is the right time, know is always the right time, we can put off many things in life this is not one of the things that we should think “I’ll get to it”, put it at the top of your priority list, then relax, if you have just given all those who care about you a gift, that hopefully they never have to realize for many years. For people like myself, who live alone, who is aware that I will be left at the mercy of the system, it is even more imperative that I have done all I can, to ensure I don’t end up not being able to speak for myself, and at the mercy of the system, ending up being kept alive with zero quality of life. I don’t care what happens to any of my things, but I do care what happens to me. So if you look at the chart, there is two areas circled the lower is sort of the standard that most have, however, I am a M3, the other circled area. There is also explicit to that, orders on the form signed by both my doctor and myself. I can rest easy knowing, that when my system goes into crisis, what will happen, and that if and whoever may be still here, it will be a simple phone call from my doctor that I am gone. I know I have talked to this subject maybe a little lighter in previous blogs, this one more blunt, due to my ever progressing complicated health challenges. My doctor told me he felt I was being wise. Most don’t understand that health care directives are great, but they are not accessible at the hospital, so until someone can bring it in or has authority to speak for you, you could end up having things done you don’t want.

No I do not have a death wish, I am not even close to being done or accomplishing what I want to, but I ultimately don’t get to decide when my time is up, but in the meantime, I can focus on doing all I can to live as fully as I can, to do all I can to minimize the effects of my dementia, all the rest is taken care of. I am grateful that I have a team of doctors who work so hard, during a time when our medical system is in crisis, too ensure I have the best quality of life for as long as possible and that they will ensure the end is also as best it can be. I have much to be grateful for. I hope this blog is not upsetting, but instead prompts you all to give deep thoughts to what it is you truly want should something happen, to encourage you to have the conversations with your doctors, make sure it is clear on how things work where you live, get things in place with them, get them to help you have conversations with your loved ones if you are not able to do it on your own.

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

Monday Morning Thoughts

Thank you to my friend Julie Hayden for the above piece by the ever lovely Gail Gregory. Both are great advocates and do so much for bringing awareness.


This should be the basis for a campaign on dementia, it highlights so many of the very valid things that so many advocates have been trying to get the broader community to understand about dementia rather than fear it.

YouQuest Calgary is also showcasing how valuable the connections of bringing people with dementia is and how much their quality of life is improved by allowing them and giving them the opportunities to try new things, learn new things, be out and about having fun in a safe environment. Quality of life is so important no matter what you may or may not be afflicted with, people with dementia have been sidelined, sidestepped, ignored and locked away for too long, creating symptoms of the illness to worsen. This has allowed the fear and stigma remain. 30 years of advocating as seen only small measurable change. But we all keep trying, persistence will prevail, the numbers of people and ages of people being diagnosed keeps increasing and so eventually it will force changes and viewpoints. The advocates who were trailblazers who we all still look to for inspiration, who gave so much of themselves we will forever be grateful to, and to honour them is to carry on the work they started.

Sitting at a time when much is wrong in the world, where supply issues, housing issues, addiction, homelessness, health care systems collapsing, one wonders if the realm of needs, the voices of those living with dementia will be drowned out. It is a valid and real concern for many. Will we receive the care we need, will there be effort put into the rehabilitation resources that we need, will our lives matter? As much as I have no answers to these very real concerns, the one thing I do now is that we must not stop we must not give up, we must raise our collective voices to a new level.

So a big shout out to all who are continuing to keep using their voices for the betterment of all, and to all the organizations and groups who are truly making a difference to those living with dementia in real time in real ways.


Below you will find a piece from the Ravenwolfs Collection, and a link to find more: I follow and read a lot from her collection as so much of it feels like me. This piece definitely describes where I sit these days.

Check out my entire collection of books:
https://houseofravenwolf.com/collections/frontpage/products/ravenwolfs-complete-works-books-1-7-with-bonus-signed-unsigned-versions-available

She’s the strongest person everyone knows,
A beautiful soul who always seems to be smiling and laughing..
But they know what she wants them to know, they see what she wants them to see.
She accepts and loves people for who they are, without judgement or expectation.
Her battles are the quiet ones no one knows about, behind closed doors and silent tears.
She cries from inexplicable sadness, momentary angst and absolute weariness.
Not the sort of tired that sleep can satisfy, but the deeper kind- a soulful fatigue that needs much more than rest.
She seeks no pity from those in her life, for she is the strong one..
Because sometimes, being strong is her only choice.
She loves with all her heart, lives every day to its fullest and gives everything her all.
She’s learned to temper her expectations and depend on herself.
Strong willed, sassy and feisty, she’s the woman that people never forget..and she makes sure her voice is heard.
Not just to talk, but because her words have meaning and her thoughts matter.
She’s not a candle in the wind, she’s a roaring wildfire.
It doesn’t mean she doesn’t fight her internal battles of insecurities, fears and worry, only that she knows her strength and never gives up.
She’s not a fighter because she always wins, but because she never stays down.
She’s okay with being a beautiful mess and a wonderful disaster,
Because she’s not defined by all the things others focus on-flaws and imperfections.
She knows who she is, what she wants and she won’t stop until she’s happy.
She’s the strongest of women, but not in the way that people think-
She’s tough in heart and hardy of soul.
She loves when she shouldn’t, more than they’ll ever love her back..
And yet, she still keeps pouring out her heart.
That’s the beauty and blessing of a strong and soulful woman.
|ravenwolf

Check out my entire collection of books:
https://houseofravenwolf.com/collections/frontpage/products/ravenwolfs-complete-works-books-1-7-with-bonus-signed-unsigned-versions-available

So today as I ready myself for a long Doctors appointment, I am for her a beautiful mess these days, but I am here, somedays better than others, life has changed me yet again, life changes happening again, ebb and flow, but still doing the best I can at each moment in each day. perhaps that is enough, perhaps that should always be enough, because if we allow ourselves to feel, to laugh to cry, then we are living, and that is enough.

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

The Other Side of Dementia

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I am sitting outside this morning at our medical lab waiting in line to have tests done this a.m., after visits with my doctor yesterday. He wants them done right away, and apologizing to me for what it entails now to access and get any tests done, a true sign of our failing health care system. The pressure on the whole system is palpable. My doctor will track me down before the weekend and then I will also see him for a double time appointment Monday, with the following week being a day with my specialist at the hospital for a series of heart tests, it’s working too hard again.

This brings me to the point of the title of this blog. Dementia in and of itself is a difficult and challenging illness to live with and navigate, so many different types, so many variations of symptoms. Yet still after so many years the focus is always about memory loss. Memory loss for sure can play havoc, it usually sees a progression as time ticks on. However it is the many other aspects that are the more difficult to live with, navigate and understand and even more do to get others to understand.

A good example is my own dementia, vascular dementia, early onset set vascular dementia. The biggest piece of my dementia is not my dementia but the vascular component which effects my dementia. Blood flow issues, TIA’s, my whole vascular system rains havoc, impacts all my major organs, my heart is and has been taken a big hit. Why is this important, because all of these things combined effect my dementia, it’s different each day, sometimes I get a really good stretch where I can almost snd I say that in a light heart manner, convince myself that maybe I don’t have dementia…. Hahaha, but then there it is, forgotten words, names, places. The forgotten medications, meals, where I am going or why. I have become good if not great at using alternate words or phrases or sentences when word finding is difficult, most would not even be aware that I am doing it. Actually many with dementia are good at make things work, it means less stress on ourselves, better quality of life for ourselves.

My vascular and other complex health challenges and by the way did those cause the dementia or the dementia play a role in them? Does any of it really matter?

What really matter is that people start to understand that every person with dementia needs to be treated individually, because everyone of us comes with our own complex issues that require different elements of care, understanding . It requires people from Doctors to health care professionals to the general public to be open to learning each individuals needs and be willing to learn from the person with the lived experience. Too have an understanding or at least the willingness to learn about the people living with dementia who are in their care, or in their circle. I am blessed with a great team in a failing system, I am grateful for their willingness to listen, to help me continue to have the best quality of life as possible.

They are also helping me through a difficult time that leaves me physically, mentally and emotionally fatigued and fragile, all of which impact all aspects of my health, including my dementia.

So speak about your good days and bad days, don’t be afraid to tell your story, it’s all part of helping others gain a better understanding.

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

Where have all the people gone?

Seems like a silly question right?, yet over and over we hear from people living with dementia how family and friends disappear from their lives. Often we hear it said followed by, “ but I understand”, and “it’s Ok, I get it”. We accept their departures from our lives, like we expect it, and for many it does become the expected and somehow expected outcome after a diagnosis. Sometimes people stick by for a time, sometimes others step in and step up to fill the void, to ensure connection and the importance of not becoming to isolated doesn’t happen. Often we don’t know, understand and can’t no matter how hard we try understand the departures. People are hurt by these departures, but rarely do or say little except that they understand, and that it’s ok.
I have learnt though that people come and go, but we shouldn’t chase after them, leave room for them to come back into life it lets itself to that, if not be thankful for the time and enjoyment you had, cherish those and open yourself to let new people in, you may enjoy some wonderful new relationships that will go the test of time. This holds true if you have dementia or not.
I have been fortunate that through my work and affiliation with Dementia Alliance International, and with various research groups like the CCNA ( Canadian Consortium Neurodegeneration in Aging, AgeWell, and others have gifted me with friends around the globe, and providing opportunities to meet in person with many helps keep me connected, even though for the most part still isolated. Without having the opportunities to work within these and meet others, I would struggle to have purpose or hope at this time. They are a life line.
They have been, kind, caring, respectful, as I am navigating the loss of my sister, which has taken the wind out of me, but their willingness to be there in any way they can, the willingness to give me time and space, yet ensuring they are there if need be, speaks volumes to the depth and importance and strength of those relationships. I am grateful for all of them.

Back to the title of this blog, I sat here with an address book and pen and paper, the loss of my sister has me reading in many ways, thinking about all the losses, I was soon to discover, that I now have more people on the other side, than I do in the here and now. I have no idea if it matters, except to me. I am ungrounded at the moment, I feel like I’m holding my breath, gasping for air. I will get there, I will be gentle with myself and I will get there.

There is many things of concern in the dementia world, how and why many organizations collect huge $$$ every year, but very little ever actually makes it to being used in ways that has a positive impact for those living with dementia, it’s like 30 years of advocacy has fallen on deaf ears. I believe we have to fight to have a measurable way to see how they are doing and everything they do should have to be reviewed by an independent group of people living with. They should also be required to set aside a certain amount to fund bringing people with lived experience together. I believe more input from those with lived experience to make sure grants are going out and do and for things that will actually be good and have a positive effect on those with lived experience. I believe it’s time we hold them accountable. Everyday there is reports of funds being misused throughout many organizations ,it is time to make them and their people accountable, they are collecting money on the assumption it is going to help people with lived experience… its time.

I have mixed up days, dates, my medications and appointments in fact today I thought it was Sunday, wrong, it’s Monday evening, pills missed, others taken to often, nitro patches forgotten to put on, other times forgotten to take off, the other day I discovered I had three on. Oh well, I will get on track, some days are better than others. Life is and can be hard and down right cruel, but it can also be beautiful. The sadness will come and go and I am pointing myself in the direction of finding my joy again, finding my peace, finding the beauty.



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

Changing it Up

The peacefulness of my deck

I have made some changes to my daily routines, trying to restore and recharge. One of the things I have done is gone back to my Buddha Boot Camp Book and back to practicing my meditations and mindfulness. It is grounding, and sometimes life pulls us away, sometimes life turns our life upside down, sometimes it throws us unexpectedly into the throws of grief, well actually whether expected or unexpected, grief hits us all differently, somedays it feels like you are drowning, somedays you go along just fine then suddenly you are overtaken again. The mental and emotional and physical exhaustion is something you cant quite explain, its something one only seems to understand after feeling the effects. Part of my self care means getting back to self care, it might be small little things, more rest, eating healthy, fresh air, being in Nature, to other things like sitting in quiet peaceful meditation, prayer or whatever or however you like to phrase it.

One of the other things I have decided to do is to do and change my eating routine. I eat healthy for the most part, but I have decided to eat backwards for a time, so I eat my dinner for breakfast and my breakfast for dinner. Sounds odd doesn’t it, but somehow in the quieter moments I could hear that I was being told to eat backwards, so yesterday i had my piece of chicken and salad for breakfast. I was surprised at how much I actually enjoyed it. And then for my supper I enjoyed a piece of toast and peanut butter and jam, with my bowl of berries with a splash of yogurt. I enjoyed it, enjoyed not having the heavier meal in the late afternoon. Listening to and quieting our life to allow room to hear what our hearts, minds and souls are trying to tell us, isn’t easy for most people, I always do better when I give myself space and time for it. My whole being needs healing time so thats what self care is about right now., and if eating backwards is part of it then thats what it will be. People often say to me that I am so strong, I don’t feel strong right now, I feel broken, but I know out of the brokenness I will emerge, a different person on many levels, but life will bring me to what and where I need to be.

Floating, drifting, letting things just be, no pushing, be ok, to just be ok, and somedays not even ok. Something we have spend many years trying to take away from people, by rushing people through life events and emotions, is the very thing that would allow people to heal, recover, move forward in a healthy manner. I am taking my right to have and do whatever is required for me to heal.

I have started doing some of my advocating work again, but only to the degree I feel I can manage, no longer feeling like “I have too”, taking the time to really focus in on the things that are the pieces of my advocacy work that are of the most importance to me, so that I can hopefully try to have a greater impact, making a positive difference for others.

Well it is 620 am, I have been sitting out side in the quiet zen fullness in the presence of my Buddhas since 330 am and its now time to get showered and ready for a morning walk before the heat of the day sets in.

I hope you all find a way to do and take the time to do those things that help keep you grounded and finding your inner peace.

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