Category: Advocates

Yesterday I had a lovely day, a beautiful day really, unless of course you count all the things that my brain had me struggling with. Like in the morning looking at my blister pack ,thats what they call it here when they prepackage your medications so you know what day and time to take them, I was confused I was sure I had taken my pills an hour earlier , but there it was my Wednesday pills staring at me, except wait let me go check, crap its Thursday..so what the heck did I take and what should or shouldn’t I take now? Well, maybe I better not take anything more and start again tomorrow. Almost missed a meeting, oops almost missed two, halfway through the day I realized I had put two of my nitro patches on. Geesh… oh well my printer wouldn’t work or at least my brain could figure out how to get it too work. Despite all of those blunders, I had a great day, but last night I woke up and I was angry, in that moment, I hated my dementia, hated it for challenging me so much, HATED,HATED, HATED IT… yes I have days were I hate my dementia, even though I say I live well with it, and for the most part I do, but some days, when it really challenges every thing I am doing, I rage at it, and last night thats what I did. My brain is fatigued today likely from me fighting it on some many fronts yesterday, so today is a home day a rest day a quiet day. Even with things like blister packs in place things are only good for as long as they are good and when they start becoming problematic, then we are back to the drawing board finding solutions to allow us to manage what we were but no longer are.

It’s a constant, changing, changing, changing again…never ending in the dementia world. It’s we we do we adapt. I was and am enjoying the beautiful weather, I can and love to be outdoors and this time of year is perfect, but some days my brain says no stay home and stay put, that was today, however I used it to go through clothes, and cupboards get rid of stuff that not longer serves me, every passing day, less is more for me. I have never had a closet so empty, cupboards with room to spare. Transitioning to what I don’t know but it feels like I am once again in transition.

My calendar is filling up again, advocacy work is kicking into gear, October will see me in Regina Saskatchewan, November in Toronto Ontario, other on line events as wellI really need my brain to cooperate and give me another year to complete things I still want to do. Some things in my control, others are not, I have to remind myself one step and one day at a time. Today was the first day I had a lighting bolt sear throw my head, so it was that clear warning, … yes I am paying attention…yes today I will let you rest my dear brain, I am sorry I was angry at you last night, I will do better to understand you. Thats me bargaining with my brain…. seems and sounds crazy right… well you should live inside this body/brain of mine. Dear Brain, I hope tomorrow we can play nicer again. For now just rest.

And this was the perfect picture for this post… I have already posted this, yup, it’s true, posted with no content, just a title, having a good laugh at myself, a little conversation with my brain asking it “what the hell are you doing”? Finding our way to laughter through the things that otherwise could cause a lot of frustration and anger, anxiety and tears, instead it is humour and laughing at one self is good for us. I don’t need to laugh at anyone else, I love to laugh with others but I don’t like to laugh at others, but laughing at myself is something that I have learnt to take great pleasure in. So thats how I began my post today.

Its been a remarkable week in many ways, a lot of release happening, a lot of deep inner work, inner peace and calm, feeling this is a great time of transition again but in many ways long over due transitions, giving myself permission to start living, living in a much deeper more meaningful way, not just a way that often was me doing what was expected, carrying responsibility to things that are no mine to carry any longer. It is truly time and ok for me to live a life and fit all those all other things in, instead of sitting and always waiting to fit in when it was right for others. I feel like I can breathe again. I had a lot of heaviness I was carrying, it is been replaced with lightness and light. Finding and being authentic to me. That has given me the ability to really think about what I want the rest of my journey to look like. I cannot control the rate of speed ( with the exception of controlling things like nutrition, sleep, stress, exercise), my disease will progress at whatever rate and in whatever way it chooses. In the meantime, I can live, just live, doing whatever makes me happy. I love the lightness I feel in my being. I feel surrounded by really good energy.

This morning I got up, did an hour exercising and dancing, and washed my car, then took the dog ( the weather has cooled since yesterday and our ongoing heat wave, but we are now smothering in smoke from all the surrounding fires, so while I can have my drapes and blinds open because the temp is low enough I don’t have to black it out, I still have to really limit any outdoor time due to the smoke. So for some reason I meant to be indoors a lot at this time, perhaps so that I can do all that inner work, do my meditating.

I had the pleasure of joining my support group ( I’ve been away for awhile with all the personal things happening, so it was so great to be back to reconnect, man those connections are so vital), they filled my heart and soul, and how much I had missed them was very quickly realized. The importance of those support groups and the friendships and sharing and caring done cannot ever be understated. If you have dementia or someone who does this is where they will find unequaled peer to peer support http://www.joindai.org it is free and invaluable in how life changing it truly is, and this is especially true for many who no longer want or can get out to any kind of support, if you are lucky enough to have support in your local area, these peer to peer can be a great add on.

I then went to meet and deliver something to a lady who had posted for something she needed, I had one and I really had no need for it at this time, so I gifted it to her, gifting things to people who can use it feels good, I remember how grateful I was and still am to the people who helped when I needed it particularly in the first few rough years after diagnosis. so giving back feels good. She was so thrilled, we had a lovely chat, I am glad I got to meet her, while we were chatting another young couple came and asked where they might be able to find something like I had just gifted her, so I helped them to know where they might post to say they were in need, we all had a great visit, kindness abounded. We all talked about how one small act of kindness goes so far and how it really brings more good. It was an uplifting encounter. I have had people say but you could have made $10, or some other amount, but sometimes, like today, seeing the good and how much it helped someone else, setting money aside brings much more value to your life. I don’t have much and I still struggle in many ways but if and when I have the opportunity to make a difference for someone else I try very hard too.

I am now making my once a week very healthy and balanced meal, I don’t cook a lot, I make this and that, small but healthy but once a week I make myself do a full meal, its all done in my air fryer, I love that I can bake and do so many different things with it. I also made another big pitcher of my home made iced tea, with black tea and lemons and limes, I don’t sweeten it and I enjoy it warm or cold and it feels like paying close attention to what and when I eat is proving good results in how my overall health is doing, even my specialist told me after doing all my heart tests again, that I am holding really well in all areas of my health and do keep doing what I am doing and to get out there and live as much as I can. And as I was writing that last sentence my phone rings, its the doctors office…humm, I pick it up its my doctor, he was supposed to finally be off for a much overdo and deserved break, but the doctor shortage has once again, thwarted him having any time off , this is heartbreaking to me, he has not had time off since the pandemic started, a few hours here or there a day or two here or there, but not substantial time off, its a crisis that if we all look we can see, we all want our holidays our time off, yet so often we hear the doctors berated for needing and wanting the same.

They are deserving, they need the break, its draining on them mentally and emotionally, I apologized to him and said I was truly sorry that again is time off didn’t happen. I have an appointment for Tuesday so was not expecting a call at a time when he should be on a holiday and it is the Sunday of a long weekend that most are off enjoying. He wanted to talk about my meds that I am on before he renews them for the pharmacy. I will still see him on Tuesday as scheduled. I wish I could take him something as a Thank you for all his hard work, I am not sure what would be an appropriate gift, I will have to put some thought into something. He has provided me with above care over and over again. I think we all need to let them know how much they are appreciated before we lose to many more.

September is world Alzheimers Awareness Month, it still amazes me that many people think Alzheimers and Dementia are two separate diseases, when in fact Alzheimers is just one type of Dementia, for which they are finding more and more types all the time, and Covid is predicted to bring a whole new type of dementia on board. In the world of advocating one sits back and wonders and we have many conversations around how after 30 years of advocating, people like Dr. Richard Taylor, ( who by the way I was awarded the very honourable Dr. Richard Taylor Award for my Global Advocacy work), something I am very humbled and honoured to have received. Along with other great advocates like Christine Bryden, James Mckillop and Kate Swaffer to name a few. These advocates, great people, who worked and many continue to work tirelessly to see changes for the improvement in and around all things dementia. When we pause and think about it, we wonder, why it is taking so long to see movement and change. I believe there is many organizations making a lot of money on dementia by keeping the old views and ideals about it alive, so instead of doing and putting money into the things that could and would make a difference, they work hard at just showing that they are doing something to keep people from asking to many questions. I am not one of those people. I believe we need to make them more accountable, from our governments, to our health Authorities to our Dementia Organizations. Often times they don’t want to hear from me because they don’t like, I shouldn’t even say the don’t like, more that they don’t want to hear it, in large part because even they know it has become more about the big business side of things that it is ever about those of us living with the illness.

Change is slow to come it took 30 years for Cancer to become something that wasn’t hidden away, and we stopped hearing terms like ” the C word” instead of saying cancer. It took 30 years of people living with cancer to finally start demanding and insisting on getting what they needed. the resources and supports in place. Do they have everything they need, no put they have much much more than those living with dementia, and some other illnesses. Know we find ourselves in a time when everyone is pulling back on what they are giving, the global issues facing everyone is making it harder and harder and people are also less interested, or perhaps they are not actually less interested they are just “life tired”, coming through the pandemic into world supplies issues, increasingly high costs of living. So even if they want to care even if they would normally like to be involved and help, they simply are out of steam, emotionally, mentally, physically, out of steam.

Where does that leave us, the advocates who want to make a difference for all those living with dementia. We are stuck trying to navigate through times where finding support, volunteers, funding is at an all time, likely never seen before time. Many of us trying to find ways to draw people out to get them engaged, but how do you do that when people are so overwhelmed and fatigued, when someone’s tank is empty its empty and no amount of carrots being dangled make it less empty.

We want and need new voices of people with the lived experience, we want to help them find purpose and hope, and find joy, in meeting others with the lived experience all the while helping to improve things for others. mentoring others is something we aspire to do, so that others have the opportunity to share their thoughts, their stories, to help shape the future for all those living with Dementia. It doesn’t take anything more than a willingness to share, to be open and honest and allow yourself to be vulnerable. What is gained through being engaged is hard to put into words. Life changing, I no longer suffer with my dementia, I no longer fear it, I ROCK IT, it is one with me, my life became full again, meaningful. I have value, I have hope, I have purpose. I want others living with dementia to experience that as well. It doesn’t mean it is not hard, it doesn’t mean it doesn’t challenge me every single day, it doesn’t mean that I don’t have days that I am angry and cry and rally at it, but being engaged has made those days less.

But I fear if we can’t find ways to meet and get others engaged, especially during these challenging times faced buy us all, we will slip further back simply because all those who have been and are working tirelessly will become to tired as well, and we all have life happening for us as well, and we also have our illness which as we know can be very challenging at times and at some point will likely cause and end point in our ability to do the advocacy work, so it becomes a m ore pressing problem and one I think all dementia groups and organizations should be sitting at the table brainstorming with us about how to tackle these topics, they also have a very very large stake in sitting back and doing the same old, and not helping us with these issues. They have much to gain…the trouble is they don’t hear a lot of what we are saying know so how do we get them to hear this.

I also hope that when people are giving they really look and ask questions about how much of what they give actually makes it to help those living with the illness, often the bulk of the funds raised help them campaign to raise more funds to reach their agendas not to help those living with, the big organizations often take the bulk, leaving some of the organizations that are truly providing the much needed services little ability to compete for the donations. Food For Thought, during this Alzheimer’s Awareness Month.

Today some nice things happened, I spent the morning with a class of Health Care Aids, they were engaging and I loved spending time with them as I always have, this was followed by the arrival of a friend I have not seen for a long time ( she no longer lives here), a great time visiting and catching up, so good for the soul, both hers and mine I believe. Our visit and the engagement with the students prompt this blog today, sometimes we don’t know when, where or will provide us with inspiration, today I think them for as much as they say I inspired them, they truly were uplifting and inspiring.

I believe that somehow many people both with and without dementia having been feeling lost sort of, out of step with themselves with their lives. This is in large part created by a world that is filled with uncertainty at the moment. It forces us to go within, look deeper, delve harder. Are we really happy? What does happy look like? Are we truly living the life we want? Are we truly doing what we aspire to do? Sometimes when the world is upside down, when we have had the rug pulled out from under us, we have to find our brave. We have to be brave enough to change direction, change career, change how and where we live, change our habits, take charge of our health.

Sometimes when we are forced to look at things differently, uncomfortably, and we think we if we could go back we would, and we think we would be happy there, but there is no back button, there is only the pause and forward buttons. It is here in those moments and times when we find our brave, and we find that going back is truly not where we would be happy, sometimes it just takes a lot for us to find it for it is scary. So hats off to all the people I know who are currently feeling unsettled, but are working hard towards a new life a new way and finding their brave.

And for people with dementia who often long for the days before our dementia, but we can’t go back, only forward, we have to find our brave, face all of those things one would prefer to never face, but I have never met a group of people who have exemplified finding their brave better than those living with Dementia, with little to no resources to help them find their way from diagnosis onward, they find a way to bravely walk with their illness. To forge new lives, new ways to do things, new joy, finding their brave, each and every day in each and every step.

I am working on finding my brave, finding my way after too many life changes over that last year. I also believe that organizations will all have to find their brave as well, the world has and is changing, so doing things the same way will no longer work, so the ones that are brave enough to acknowledge that things must be done differently if they want to be relevant and effective in the coming years, change must be embraced, sought out even. Thinking out side the box, colouring outside the lines, has become more important than ever. It concerns me somewhat that many will not adapt as they should, mostly do too ego’s being and the way and the love of power, the price will be felt mainly by those the organizations are deeming to want to help….. time will tell, and that time is being thrust upon all of us, like it or not.

So no matter where you are and what you are doing I hope you too can take the time to find your brave, follow your gut, listen to your heart, your life may become unexpectedly joyful in the most unexpected ways.

A welcomed reprieve from the relentless heat, yes many love it, but for me and my dementia it is not a good fit, so yesterday and today we were a good ten degrees cooler, heat comes back tomorrow. But how how lovely, yesterday I felt like I had been given a get out of jail card, even my little dog ventured on an early morning walk, after which with her settled back in at home I ventured out walking, strolling, just enjoying the breeze, the lovely air, the freedom. At home all the doors and windows open, the air flowing, no air conditioning, no fans on until bedtime because year round a fan is on at night. It truly was lovely, my music on, I cleaned, danced and then I decided it was time, to take this grief yoga program: the link is below. I am sharing the link because this program you can do at home in your own time, it’s such a great yoga program, it’s free, but most importantly, it’s great for people dealing with any type of grief. Knowing full well that people with dementia have to deal with grieving the loss of self, loss of abilities, loss of relationships and many other losses, I felt it would be great to share. So find an hour a quiet corner to sit or stand. The program is great in its simplicity, it surprised me what it pulled out of me, at one time, while working along with the instructor I realized tears were flowing freely down my face. By the end of it I was spent, yet somehow knew it was in a good way.

Today, I have had a much more peaceful day, I was going to jump in the car and take off for the day, but Pheobe after the morning walk very quietly nested herself in a way that I knew she needed to just be home resting with me nearby, some days are that way now. So I put my Lauren Diagle music on and danced, and allowed myself to get lost in it, let my mind go, finally feeling like the first step towards some healing was happening.

Oddly enough as the day went on, things started to show up tweets about grieving and dementia, emails, about how I needed to be ok with just being at this time. Funny little things and signs, that come to you if you are open to them. All my mediations and yoga’s and taking time to feel my emotions, be in touch with my feelings is and has been good for me, not easy, but necessary.

Perhaps it’s what all those diagnosed should be given at time of diagnosis, the resources and help to learn how to move through this accumulation of grief. My grief I discovered was about the loss of my sister, but also other losses as well as the losses associated with my dementia. The grief yoga program will be one I will be continuing to use for a long time.

Sometimes, during these moments when I wonder where I went, But my life is so vastly different, I don’t know anyone who has not have their life turned upside with a diagnosis, but most will also tell you life in many ways is richer, more meaningful, it doesn’t make the loss of identity, the loss of a life we had is not difficult, and at times trying to navigate the never ending changes and challenges, it can and is difficult. We often hear about and read about how hard it is on others to watch us disappear or fade slowly away, well try watching from the inside. The mental and emotional roller coaster is beyond what most can comprehend, let alone understand, another area where this is no help or resources, we help each other, that’s why peer to peer support is so important. There is no help, there is lots of resources to help care partners and family navigate it but none for the actual person living it.

I felt this saying speaks not only if we are grieving the loss of a loved one but for many with dementia it’s what we often are faced with and feeling. We spend time searching for ourselves, for those pieces of ourselves that have slipped away. We never know when we open our eyes each day, how much of ourselves will remain, it can be overwhelming, daunting. sometimes we just don’t think about it, we just live in the moment, in the day. But sometimes we can’t escape it, the longing, the aching, for who and what we were, eventually many of us move into a place where we accept what is, look out the richness our illness has actually provided us, we find peace in what is, we don’t worry about what will be instead want to find ways to make the most of each precious day, to live in joy.

Having the resources to help people through those difficult years after diagnosis and having the resources as and when we need them as we move along the journey would go a long way to give us a better quality of life which in turn would equate to a better outcome for and on care partners.

I hope many of you give yourself the time to check out the grief-dancer yoga below

https://www.pauldennistontraining.com/grief-dancer

May we all find our way to a joyful and peaceful week a head

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?

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.

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.

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.

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.

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.

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.

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.

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.