The difference a few hours or day can make, this morning I am what I would say is feeling a little hyper, cant sit still. My brain feels clear, the first time in weeks, TIA’s do that to me, that and fatigue, today I feel neither. Yippee it makes you want to run out and tackle the world, or at least dance down the street, I’ll settle for dancing around the house.
I was so fatigued yesterday I was in bed before six p.m., but obviously listening to my body is the best way to help myself. Hopefully I can have another decent stretch. This is Vascular Dementia, or my Vascular Dementia. Each one of us has unique and different yet often similar symptoms. I believe my fierce stubbornness, my fierce will to maintain my independence, and as much as many hate stubbornness in people sometimes if its challenged correctly, its a good thing, fir me I believe its what helped me be able to remain at a fairly high rate of functioning. That is something I can thank my mom for, she never tried to squash it out of us, she tried to teach us how to harness it for when we really need it. It has served me well in my 7+ years of living with Vascular Dementia.
Yesterday in conversation with one of the people I work with within the CCNA, we talked about my struggle lately to be engaged, not necessarily with the CCNA, but overall, with all my advocating work. It seems many of us are at a point of meeting fatigue, whether its advocating, support groups, presentations all those things. I thought it was just me, I was struggling to understand ” what was going on with me”. At first I thought it was because of my TIA, then I thought the fatigue, partly that is correct on both fronts, but there is another component, one that seems to be effecting a lot of us. That is simply life fatigued, so much on line stuff over the last few years, we are exhausted from it, we need time away from our computers, from social media and the like. So I scaled back a lot on what I am doing, hoping that by giving myself time, that come fall I will be ready to be back at it full swing. Its not easy to admit too but its like reaching a sort of burn out stage. But funny enough many many people are feeling it but trying to push beyond it. I am not willing to cause any more stress to my system so scaling back was a survival move, one I am happy that I have made. Again that stubbornness in me that allows me the good graces to say no sometimes. To put my own well being first. Today feels like a day that all those decisions are shining brightly so I know they were the right ones.
I am not disappearing, I will still be advocating and working on certain things, my writing will continue, but boy oh boy does it feel good to not feel bad about taking a break or saying sorry not today.
Some times starting over, or in some cases just starting is the only thing to do. In this case I was planning to write this yesterday, maybe earlier today, doesn’t really matter. Obviously, I got the title done and there it sat, and off I went doing something else, none of that really matters, thats just how my days go, then when I realized it was sitting on my computer( that only happened because of something I was going to do, but there it was in all its splendour, a title for a blog just staring at me. So then I thought I would just save it as a draft and sit with my Ipad and write. Except then I couldn’t navigate that part so eventually it was a matter of starting over, and so here we are. Ill tell you its hard friggin work trying to live within this illness, its no wonder why fatigue is such a big factor with and for people with Dementia, heck its exhausting just trying to be me and figure out who that is at this point. Ok so that wasn’t what I wanted to write about but there it is. The next paragraph may or may not get me to what I really wanted to write about.
Ah yes the title, well, give a girl safety pins and zip ties and bungee cords and she can fix, find solutions for all kinds of things. In this case a much loved chair that belongs to a dear friend, it sits on my deck, its broken, but its comfortable, using some wooden wedges and zip ties I managed to get it so it sits straight, instead of flopping around, then to try to protect the original cushion covers I fabricated one out of material using the tuck and pin technique. See photo:
So this project took my focus from all else, it kept me there until it was complete. I didn’t use bungee cords on it but I do use bungee cord to hold my umbrella when open to the deck, because of our winds. I have the umbrella tied to the railing on the deck with zip ties. It has to be secured because I live on the top floor, it could pose a danger risk. So zip ties all the way. Now Im thinking OMG I sound like a hillbilly, but really I’m just a kootenay girl, thats the area of British Columbia that I was born and raised, we were always proud to be a “ Koot Girl”, like a badge of honour. But we learnt important life skills like the many uses of safety pins, bungee cords and zip ties. Dementia hides and locks away much, but it brings much back from time to time and how to use what I have to manage to do something is one of those.
The other thing is about time, you see all of these things happened, without any thoughts to time. My friend Janet , we did a video call she is in Scotland visiting family, we have never met in person, she lives on the other side of Canada from me, we plan on meeting this fall, if all goes well. Anyways her and I had a lengthy conversation about the gift of living a life that is timeless. Its a gift of dementia. Most of the world operates on, time to get up, time to do this or that or go here or there. Time to have breakfast, lunch time, coffee time. The world runs ragged trying to keep up with the schedules of time. Even having to make time to meditate and relax, schedule “time ” for yoga or a hike or walk. Time, Time! Time. Yes we sometimes have to subject to time, appointments, meetings, catching a bus or train or plane, those kinds of things, but those kinds of things happen less and less frequently for us, so for the most part we life in a place and space that is timeless. Its living in the moment we are in, and enjoying that place and that moment. Like when I started writing this blog and suddenly my focus shifted to the chair. No stress, just let it be what needs to be in that moment. We laughed about how for others we can understand their frustrations trying to understand or figure us out, its like we are living in a different sphere or on a different plane somehow. But its ok for us because we are happy here for the most part floating along, one day to the next, doing whatever hits us, whenever it hits us, just being. Here in our dementia world, that should be the title of a song, remember the Alan Jackson song ” Here in the Real World”. Well we need a song ” Here in my Dementia World”, maybe Jay Allen could write one. Anyways this is my life as it is in this moment.
This blog is for all the Grandmothers, Mothers, Stepmothers, Foster mothers, Aunties, that have such a tremendous impact on the lives they touch. The lives they help shape, they give of themselves tirelessly, they provide us with our foundations that help us navigate life. They are the nurturers, the teachers, the healers. our confidantes, our best friends, mentors.
I have been fortunate to have had a grandmother who played a very big role in my young years, a tremendous woman, my other grandmother, my step-grandmother who came into my later, also a remarkable woman, who also had a great impact in my life, and of course my mother, who although she is no longer with me here on earth continues to guide me each and everyday. I am and will be forever grateful for these incredible woman.
I am also blessed with a step daughter who is a tremendous young woman, and mother to two wonderful children, she is such a great mother, I am so very proud of her, and so enjoy watching her in her role. My step son is married to a wonderful young lady, the mother to two beautiful girls, another young mother who is doing an amazing job of being a mother.
Women have such a critical and important role shaping the future of generation after generation, through the very life’s they are guiding, have guided or will guide. So I hope that each and every woman out there knows that they matter, that you will always matter. For the women who have no children either by choice or not, you too matter, you too touch and shape and nurture more lives than you likely realize. I believe we are all mothers in some way, at some points in our lives, so this Mothers Day I hope every woman out there gets celebrated, and if you’re alone that you celebrate you and all the ways you impact the lives you have touched in your life.
I have been thinking about the oddities that come with my dementia, things that were not part of my being in the past. Or perhaps they were I just never had the ability to realize or understand it. But some things are new patterns and I believe they are the brains way of coping and managing. For example after my recent TIA’s, as in the past the fatigue comes, the slower and hesitant speech, all part of the brain wanting and needing healing time, that is getting better, luckily no amount of any more severe effects, for which I am grateful.
But those odd things, like my just wanting and truly wanting to be just spending time organizing. This time it was my entrance closet, you know the one where the coats, boots, shoes, all those things go, all the things you need and want to keep that have to go somewhere. I spend a great deal of time taking everything out, looking at stuff, deciding what to keep what not too, painstakingly organizing it. Its like somehow my brain needs me to so that it can reset and organize itself.
Its funny I remember often how we talked about the strange behaviours or patterns or needs for certain people in dementia care, when I worked it, but being on the other side of it now I see it from a different viewpoint. Its only my opinion but I believe when we are doing these strange and seemingly odd things, its actually our brains way of doing self care, it takes us into a place and part that allows it to try to heal, a place that helps us remain calm and quit. So often we stopped people from ” playing or mucking with things”, more I think as it was an irritant to us, a nuisance, we didn’t feel it was somehow appropriate, the little bags of treasures that they somehow needed to go through over and over, but I now fully understand how important those things are.
If anyone had tried to drag me away from my closet, from my organizing, I likely would have been upset, perhaps even agitated. Sometimes as much as it can be difficult to live alone, it is a blessings as those little oddities are not bothering anyone else, so I have been able to just be in the quiet with my brain, giving it the time and space to do what it needs so that I can continue to manage.
Its funny that over time living with my dementia, I understand my brain more, it’s like I treat it has a separate but yet very important part of me, I somehow have formed a partnership with it, I listen to it, I let it guide me, for it may be broken, it may operate differently than before, but it still (guides me. It takes me and places me in things that allow me to just be, its a phenomenal experience, especially to be able to understand it. Or at least understand it for what it is for me. There is a saying about listening to your body, taking care of it, because if you don’t, it will just take it, and very often in ways that are life changing and life altering, it took being diagnosed with Vascular dementia, along with a whole host of complicating factors and living with it for all these years to truly appreciate and understand my brain. And as I feel the fog lifting, I am understanding that this is another step, that again I tire a little more easily, yet somehow I am content, I don’t want to fight it, I don’t want to push to do more, I want to just do what my body directs, what feels right for me. Next week will likely see me back at my advocacy work, although to what degree I am not sure.
Speaking of advocacy, it seems there are many changes and shifts in the advocacy world, it is important work, but there does come a time when the torch must be passed , but it somehow appears there is less and less who are willing or wanting to take up the work. I wonder if thats because they feel we have not seen enough tangible change over the years, or if they simply have decided they are just going to live their life’s as best they can, doing what brings them joy. A lot of people, understand the importance of the advocacy work, but they also somehow seem to be-able to place more of emphasis on self. Neither is right or wrong, and for many in the advocacy world knowing when to hang up the reigns and focus solely in living life is a hard thing to manage. I am trying to teach myself to transition, to jst step back from some, giving more time for the joy. I continue to be a work in progress, trying to change and adapt to the changes with my illness and its effects on me.
As most of you know today is my little Pheobes 18 birthday, she has been trudging along with me for a very long time, she was a little rescue dog, she chose me, how did I ever get so lucky.
She has been my constant, through a lot of life’s ups and downs. Since first having the stroke at 56, and us being together 24 hours a day since, except when she had the odd holiday with some of her favourite people, but over time that has happened even less and less, she has been on many many road trips with me, travelling near and far. She has been my guiding light, laying watch when I am ill, ever watchful, she has guided me to keep me safe during many of our walks. She has sat and offered comfort through my hard days and through a many tear. She looks at me with a knowing and understanding, and on my good days she eagerly wants to join me in whatever I am doing.
Backwoods exploring and campfires to the ocean and finding waterfalls. During my darkest moments since my diagnosis she gently provided me with the encouragement to keep going. But she is tiring, as am I, too many Tia’s this last couple weeks, everything taking so much effort. My focus is solely on her these days, doing all I can to ensure whatever time she has left with me it will be time she will enjoy.
She doesn’t even really like to be outside of the perimeters of home, not even her beloved car rides, but she also gets very stressed if i am not within a short few feet from her. Her hearing and vision limited, she has trouble some days navigating the stairs. But she is happy, she is not in any discomfort, for that I would not allow, so I am happy to be home with her and try to give her as much as she has given me.
I know there has been so many studies on the importance of animals to us humans, but I don’t a need a study to tell me how important she is to my life. She has helped alleviate stress, anxiety, depression to name a few of the many things. I only wish they would make small farm scale care homes the norm, so people could have pets, interact with animals partake with nature, the need for the grossly overuse of medications could be so greatly reduced, and I wonder will they ever really listen, will they ever really care. Thank you for a lifetime of love Pheobe and giving me the very best of you.
Its a beautiful day, this first day of May, 2022 is Marching on it seems in quick fashion. Last week I had the loveliest birthday week I have ever had or that I remember anyways. It was all the very unexpected things and people who made it so special for me. . I am however still in recover mode from my last TIA’s, pretty much recovered but some lingering head pains, and tiring more quickly. It seems after each one it takes longer to recoup and that I tire a little quicker. So being mindful not to overtire my brain and body, in hopes maybe in time I will get a little of the ability to sustain for a little longer. So as May unfolds, I hope we all breathe, we have made it to another month.
So I wanted to talk about this piece I am quoting here “during this time is that many people seemed to just be” “falling out of their lives.”
This was sent to me on Friday as part of a fuller message and conversation. , it resonated so deeply with me as over the course of a week I had so many conversations with people who were feeling of out touch with themselves but didn’t know how to describe it. So this “falling out of our lives” really summed it up for me. We have been living with the pandemic for more than two years, then a war and the fear of world war three starting, unsure of our supply chain, food chain. Everyone I have spoke to talks of being more tired than usual, as they try to find a new normal, as they try to navigate in what feels like unfamiliar world.
What we need to remember that it is an unfamiliar world for everyone right know, so yes we are falling out of our lives, our lives are not what they were, they will not be the same, we will evolve into some new form of a life. Right know though we are surrounded by uncertainty, its like walking blind folded and not knowing what or where your next step will place you. It feels like the whole world needs a break, which seems strange considering the last two years, but many are zoomed out, meeting out, many just need to be able to say today I can’t manage this, today I just need to go for a walk, or run, or drive, or whatever makes your heart happy, this is true for most regardless of if you have dementia other health challenges, or you are perfectly healthy. We grew accustomed to a world where we could have whatever we wanted whenever e wanted, where we could do whatever we wanted whenever we wanted. Life is and was turned upside down, I never thought I would live to see our seniors becoming homeless, the working poor living in shelters, never did I think I would see so many people be angry, I see so much anger out there, because people have not faced times like this before, except for our seniors, who survived, pandemics, wars, depressions, they know how to get through it, they know anger is not the way forward.
I know for me it has become increasingly important that I focus on life, on living, doing things that feel like I am making a difference however small, not only in the dementia realm, but in the realm of life here right now where I am. So I worked over the last few weeks and yesterday four of the ladies from my building went to the nursery, ( where I used to work), I guided them through we made a list, on Wed. we will be going to pick up the pots, plants, and supplies to create a spectacular little garden area, where we can all enjoy fresh veggies throughout the summer, it will create a little socialization, along with healthy eating habits and will make us all feel we are part of something positive. My building is small only 10 units but for the last two years we have all been isolated even from each other, everyone is so looking forward to this little venture, that doesn’t require a lot of work of anyone but has so many benefits and the safety of being ”home”, which is funny as it seems, when we are all just having restrictions lifted, where most people feel they want to be. The world does not feel that safe to many, there is too much uncertainty, but finding a way to bridge the gaps to help each other through, is the way forward, it feels so much better than spending time being angry. We in the dementia community have long been helping each other through, I am taking the gift of what I have learnt and applying it to my broader community. My soul needs it, my heart needs it, taking small steps, being gentle, being kind, opening up that kindness to others. I want to treasure each precious day.
So I hope has you walk into May you do it with gentleness, with kindness, and savour each step along the way. Thank you to all for all that you bring to my life and I hope May finds you all finding ways to navigate through these turbulent times.
Today I sat as I went through my bowl of rocks, a collection that I love, rocks I have gathered here there and everywhere over the years. Most of my pockets and inside all kinds of cubby holes you will often find a rock or two. I love everything about them, I love the texture, colours, shapes. They remind me of places and things I have done, they provide a great amount of relaxation. I can be anxious or stressed but time with my rocks melts it all away. So what was I wondering while I went through my collection of rocks, well I was wondering if anyone would ever now how important they are too me. I was and thinking about all the people put into care without being allowed some of their prize possessions, things like a bowl of rocks, that could and would actually make a difference for them, and be something that helped calm for them. People look at others people stuff and just see stuff, without realizing that it may have a great deal of importance to them. Some favourite books or collection of music, or whatever it is, pieces of jewellery, scrap books that we view as nothing but to them it is the one thing that brings them much solace, when they are feeling fearful, or anxious or stressed, or just not feeling well. Or maybe it just is something that they get enjoyment from. No one knows what those things are for me, there is no one to now those things. But I hope others take the time to ensure that if their loved one has to go into any type of care that they fight hard for them to have whatever those few things are with them, it can have a huge impact on quality of life. I can’t imagine not having my pictures and my rocks with me, along with a few other things that really matter for me. Below are some of my treasured rocks.
I found more rocks today to add to the collection, they are soaking right now getting cleaned. A lovely visit with my friend/ volunteer, who showed up today with a lovely bag of birthday goodies for me, and turns out she also loves rocks, so I got to enjoy sharing my rock collection with her. She also surprised me with a special event for May the 11, I had shown her a art/craft project I wanted to try, so she has enlisted some help and will be having a belated birthday luncheon and art/ craft day so they can help me do and try this art project. I am so excited about it. She has been another blessing in my life, and I just seem to continue to have more to be grateful for despite my dementia. She tried to help me with a project for my advocacy work that I am working on put to no avail today my brain just could not / would not cooperate so we will tackle it next time. Then another friend came and got me and took me out to, to see friends who are camping and to have a visit with them. It was lovely to sit by the fire, roast a hot dog and visit and find lovely rocks on the lake shore. So for someone who had no plans for my birthday Monday and, it was a day full of unexpected delight and joy and surprises and it now being Wed. it sure has been a week full of surprises and tomorrow another one, a friend whom I haven’t seen or talked to in a very long time, called yesterday and we are having coffee, so its been a lovely week of connections. Isolation has been hard but this week it seems to have taken a turn away from so much isolation and I am so grateful.
I am struggling in many ways that are more invisible to most, but cognitive struggles, unable to stay focused on conversations, and on tasks, focus all but gone at present. But a real need for looking and reviewing life, my life, being glad that after the last few years of having to ask so many questions that suddenly so many of my longer term memories are there, short term is another issue, but longer term are all front and centre at the present time, its been fun to look back at what is there.
Looking in the rear view mirror is not always advised. But when for a number of years you have at nothing but blankness and suddenly it is flooded with stuff from another time, it can bring about a sense of being, that I am somehow still me, A reminder of things that have brought me joy and love and heartache. Instead of that who am I, I don’t even now who I am anymore a reminder of all those moments in time. Its been wonderful, so at times it is that what I could do last week I can’t this week because my brain has wandered to other things. I just let it be what it needs to be no longer plying myself with guilt about things I should be doing, just allowing myself to be in whatever space I need to be right now and today was just enjoying my rocks.
I have talked with others who say its like they just need to spend more time on “life” right now, perhaps we all advocated and worked on those things so much through the pandemic that we all in need of taking a break, maybe we are all trying to establish a new life/dementia/advocacy balance. It’s ok to take our time to do that, life isn’t normal for us on any given day and with everything else that has been thrown at house and continues to be, it’s ok to take our time, to take time out, to be where and doing what we need in the moment. This is where I am at the moment, just being, just puttering around in the moments. I hope whatever your situation may be that you also give yourself permission to be. Thank you to everyone who made this birthday week the best birthday I have had in many many years.
Today Is my 63rd birthday, I’m sitting having a quiet coffee, this morning. i have disconnected over the weekend from social media, choosing to spend some quiet and joyful time with my little dog Pheobe,she will be 18 on May 4th. She is winding down and I see it and feel it, so I took her for a nice drive, some exploring in nature, and just spent some time in quiet of Nature, some lovely time some pictures scattered throughout this blog.
Funny age has never bothered me, I feel young inside, I still am in awe of our natural wonders, of our animals, forests, everything our earth has provided us. I am in awe of the natural order of things if man gets out of the way, I have come to feel as though man is the worst of all that roams and lives on the planet. I wonder if this sort of reset we experienced with the pandemic has been enough to really make us pay attention and do better at looking after our earth.
Anyways back to aging, this year it has been different regarding my birthday and aging. Two recent TIA’s, progression of dementia, changes I am aware of , and although small compared to changes that happen with some people with some types of dementia, its changes, its reminders that I must be grateful for each and doing things that bring me joy. Sometimes its east to and perhaps even understandable that the days happen where you feel angry about it all, about being robbed of your life plan, your highest earning years stripped away, having to eat through your savings faster than you could have e er imagined, not being able to build your retirement, and I do have those days, where you just sit and cry at the shear magnitude of losses, but those days happen less often know, instead there is more inner peace, more finding and seeing the joy in the simplest things in life.
But this year turning 63 has brought about different thoughts, different knowings, for turning 63 means Ihave a window of approx. 18 months starting today, so the clock is running, 18 months to figure out and navigate the changes coming. At 65 my disability stops, another decline in my already very meager income, along with my blue cross that covers some of my medical costs, so my living arrangements will have to change yet again, the cost of rentals and cost of living are already impacting me, I have no idea how to navigate whats coming, buying a tent may be wise. Becoming one of the many of our senior and people on disability population who are becoming homeless is to real and frightening thought. I know so many people think it can or never will happen to them , but no matter how well you think you have yourself covered off it doesn’t mean that you are immune to it happening to you.
So I will be working at getting my self ready for the next phase, if I am blessed to get to the next phase. So changes on the horizon, I will get the help of my volunteer and my doctor to help navigate it all. And I will try to remain positive and just focus on the joy and beauty of the simple things in life.
My dog winding down her life weighs heavy on my heart so my focus has been trying to ensure her days are joyful as well for she has given me so much and with her I have never had to feel lonely or alone, and as much I try to prepare losing her I know I will never be ready and the thought of how alone I will truly be is unimaginable. So for now its enjoying every minute of the gift I was given in her.
So as I move through what appears to be a monumental birthday, funny usually its the big 50 or 65 or such for me its this my 63rd birthday. So I will be grateful that I am here, I am still standing, still independent, a lot to be grateful for, for those who have stayed by my side through all the ups and downs, to all those who have helped me along the way, yes I have much to be grateful for so I will celebrate this momentous birthday, I will enjoy my cake, a slice each day for a week, and then I will get down to business of sorting out the rest, but mostly I will just be looking to fond joy, happiness, love and laughter. So thank you for being part of and sharing my journey, for your inspiration, for your encouragement, you have helped me be able to see this my 63rd birthday.
And I leave you with a verse that really speaks volumes for me and a picture of what 63 looks like for me today.
It’s hard to believe that I have been doing my blog for 5 years already. Looking back, it started as a way to help me keep track and to be able to have record of what was happening in the moment for my doctors. At the beginning it was simply called “Through the Neuron Forest” As that transitioned it became “Chrissy’s Journey” and a way of trying to help others understand my world from my perspective not just their view, so often the two are so very different. I then started hearing from others that it was helping them in different ways, so I continued.
I would like to thank everyone and give them a big shout out to all who I have had the pleasure of meeting or who over the years has sent me some lovely messages. It is all the people along the way that has helped provide me with a sense of purpose, filled me with hope and kept me inspired. It is all of you who inspired me to write my first book, my second is pretty close to completion …. more to come on that at a later date.
Just this last week I have heard from three people asking me to continue to write. One whom I will say is M, who doesn’t know me expect through my blog, her words came via email at a time when in fact I was questioning whether I should continue on with my writing, her words mattered to me, just as much as she said my words matter to her. So in fact we matter to one another, without ever having met. And at the end of her lovely email she left it with quote that was so fitting and so relevant and gave me reason for great thought. ” Maybe stories don’t just make us matter to each other. maybe they’re also the only way to the infinite mattering – Author John Green”, she went on to say that my stories will continue to guide others into the future. I am deeply grateful that she reached out. One of the others “D” I have never met face to face but have formed a wonderful friendship with through our work with various dementia outlets and organizations, the other “M” I have known for a number of years and I have had the pleasure of meeting in person, and our friendship has carried on for a number of years. Both of their kindness and words also came at a critical time for me.
I have always vowed to continue to write, to be raw and real, even though sometimes it’s hard to be so vulnerable. It’s also something that I believe is very therapeutic in and of itself. I am so happy that the ability to write somehow was a gift of my dementia. I write at all kinds of times, when my brain is yelling at me to get it on paper I write. So often it has helped me as I have moved through different phases and dealt with varying symptoms. It is a gift I am so vary grateful for, but the biggest gift is you the readers of my blogs. the pieces of yourselves that you have shared with me, that many of you have allowed me into your life, I am truly honoured.
So my blogging will continue for as long as I can manage it, I have no set timetable or schedule as to when they come out, I publish as soon as I finish writing, sometimes I write every day other times its days and days in between, its all about my brain, so I don’t try to stress it by forcing it to meet a schedule that will set us both up for failure, I like that it is and will remain, original and organic. So as I wander into my 8th year since diagnosis, wondering how many years I may still fight to have and as I work on my recovery from this latest round of upsets or TIA’s I thank you all for your support.
I think I had another Tia last week and then another a number of days ago, all the signs and symptoms were upon me, the vision issues, pain and pressure behind my eyes, lighting bolts flashing through my head, the brain fog, the fatigue. Yes we get to know the signs and symptoms, if severe enough we go to the hospital if not with the the help of my doctors, I have over the years learnt how to self manage. I know one day I will likely just be gone from a massive stroke, sometimes it seems so funny to know you live with a terminal illness yet is very likely the contributing factor of that illness that will take you out or something entirely different. Again it’s just the knowing and sometimes the things we think about, its all ok, I am going to be 63 in a week’s time, I am on the back side of life, more behind me than in front of me, so the thought of dying does not and is not something that I shy away from, nor is it something I am afraid of.
Following is a little information of Vascular Dementia: I am posting it for information purposes only not for medical advice, more so that you can perhaps understand a little of what is happening to me.
“Vascular dementia results from impaired blood flow to the brain and is the second most common type of dementia after Alzheimer’s disease. A host of cognitive and neurological impairments accompany vascular dementia, including memory impairment and trouble with coordination such as walking and balancing. It is best to consult a doctor or healthcare professional (or accompany a loved one to the doctor if you suspect they are at risk) to rule out other similar conditions. Though there is no cure, there are treatment options and ways to manage.”
Vascular dementia is caused by reduced blood supply to the brain due to diseased blood vessels.
To be healthy and function properly, brain cells need a constant supply of blood to bring oxygen and nutrients. Blood is delivered to the brain through a network of vessels called the vascular system. If the vascular system within the brain becomes damaged – so that the blood vessels leak or become blocked – then blood cannot reach the brain cells and they will eventually die.
This death of brain cells can cause problems with memory, thinking or reasoning. Together these three elements are known as cognition. When these cognitive problems are bad enough to have a significant impact on daily life, this is known as vascular dementia.
Types of vascular dementia
There are several different types of vascular dementia. They differ in the cause of the damage and the part of the brain that is affected. The different types of vascular dementia have some symptoms in common and some symptoms that differ. Their symptoms tend to progress in different ways.
A stroke happens when the blood supply to a part of the brain is suddenly cut off. In most strokes, a blood vessel in the brain becomes narrowed and is blocked by a clot. The clot may have formed in the brain, or it may have formed in the heart (if someone has heart disease) and been carried to the brain. Strokes vary in how severe they are, depending on where the blocked vessel is and whether the interruption to the blood supply is permanent or temporary.
A major stroke occurs when the blood flow in a large vessel in the brain is suddenly and permanently cut off. Most often this happens when the vessel is blocked by a clot. Much less often it is because the vessel bursts and bleeds into the brain. This sudden interruption in the blood supply starves the brain of oxygen and leads to the death of a large volume of brain tissue.
Not everyone who has a stroke will develop vascular dementia, but about 20 per cent of people who have a stroke do develop this post-stroke dementia within the following six months. A person who has a stroke is then at increased risk of having further strokes. If this happens, the risk of developing dementia is higher.
Single-infarct and multi-infarct dementia
These types of vascular dementia are caused by one or more smaller strokes. These happen when a large or medium-sized blood vessel is blocked by a clot. The stroke may be so small that the person doesn’t notice any symptoms. Alternatively, the symptoms may only be temporary – lasting perhaps a few minutes – because the blockage clears itself. (If symptoms last for less than 24 hours this is known as a ‘mini-stroke’ or transient ischaemic attack (TIA). A TIA may mistakenly be dismissed as a ‘funny turn’.)
If the blood supply is interrupted for more than a few minutes, the stroke will lead to the death of a small area of tissue in the brain. This area is known as an infarct. Sometimes just one infarct forms in an important part of the brain and this causes dementia (known as single-infarct dementia). Much more often, a series of small strokes over a period of weeks or months lead to a number of infarcts spread around the brain. Dementia in this case (known as multi-infarct dementia) is caused by the total damage from all the infarcts together.
Subcortical vascular dementia is caused by diseases of the very small blood vessels that lie deep in the brain. These small vessels develop thick walls and become stiff and twisted, meaning that blood flow through them is reduced.
Small vessel disease often damages the bundles of nerve fibres that carry signals around the brain, known as white matter. It can also cause small infarcts near the base of the brain.
Small vessel disease develops much deeper in the brain than the damage caused by many strokes. This means many of the symptoms of subcortical vascular dementia are different from those of stroke-related dementia.
Subcortical dementia is thought to be the most common type of vascular dementia.
Mixed dementia (vascular dementia and Alzheimer’s disease)
At least 10 per cent of people with dementia are diagnosed with mixed dementia. This generally means that both Alzheimer’s disease and vascular disease are thought to have caused the dementia. The symptoms of mixed dementia may be similar to those of either Alzheimer’s disease or vascular dementia, or they may be a combination of the two.
How vascular dementia affects people varies depending on the different underlying causes and more generally from person to person. Symptoms may develop suddenly, for example after a stroke, or more gradually, such as with small vessel disease.
Some symptoms may be similar to those of other types of dementia. Memory loss is common in the early stages of Alzheimer’s, but is not usually the main early symptom of vascular dementia.
The most common cognitive symptoms in the early stages of vascular dementia are:
problems with planning or organising, making decisions or solving problems
difficulties following a series of steps (eg cooking a meal)
slower speed of thought
problems concentrating, including short periods of sudden confusion.
A person in the early stages of vascular dementia may also have difficulties with:
As well as these cognitive symptoms, it is common for someone with early vascular dementia to experience mood changes, such as apathy, depression or anxiety. Depression is common, partly because people with vascular dementia may be aware of the difficulties the condition is causing. A person with vascular dementia may also become generally more emotional. They may be prone to rapid mood swings and being unusually tearful or happy.
Other symptoms that someone with vascular dementia may experience vary between the different types. Post-stroke dementia will often be accompanied by the obvious physical symptoms of the stroke. Depending on which part of the brain is affected, someone might have paralysis or weakness of a limb. Or if a different part of the brain is damaged they may have problems with vision or speech. With rehabilitation, symptoms may get a little better or stabilise for a time, especially in the first six months after the stroke.
Symptoms of subcortical vascular dementia vary less. Early loss of bladder control is common. The person may also have mild weakness on one side of their body, or become less steady walking and more prone to falls. Other symptoms of subcortical vascular dementia may include clumsiness, lack of facial expression and problems pronouncing words.
Progression and later stages
Vascular dementia will generally get worse, although the speed and pattern of this decline vary. Stroke-related dementia often progresses in a ‘stepped’ way, with long periods when symptoms are stable and periods when symptoms rapidly get worse. This is because each additional stroke causes further damage to the brain. Subcortical vascular dementia may occasionally follow this stepped progression, but more often symptoms get worse gradually, as the area of affected white matter slowly expands.
Over time a person with vascular dementia is likely to develop more severe confusion or disorientation, and further problems with reasoning and communication. Memory loss, for example for recent events or names, will also become worse. The person is likely to need more support with day-to-day activities such as cooking or cleaning.
As vascular dementia progresses, many people also develop behaviours that seem unusual or out of character. The most common include irritability, agitation, aggressive behaviour and a disturbed sleep pattern. Someone may also act in socially inappropriate ways.
Occasionally a person with vascular dementia will strongly believe things that are not true (delusions) or – less often – see things that are not really there (hallucinations). These behaviours can be distressing and a challenge for all involved.
In the later stages of vascular dementia someone may become much less aware of what is happening around them. They may have difficulties walking or eating without help, and become increasingly frail. Eventually, the person will need help with all their daily activities.
How long someone will live with vascular dementia varies greatly from person to person. On average it will be about five years after the symptoms started. The person is most likely to die from a stroke or heart attack.
So that is the state of my health at the moment, for all other accounts I am still doing well since my Moderna vaccine helped my immune system, that is still be followed by Moderna and my doctors. But that does not stop my dementia from progressing or from things like TIA’s from happening. A lot of changing in my eating habits continue, incontinence issues come and go. It is definitely impacting how much I am doing these days, overall and how much I will be able to manage to continue to do. As much as I am aware of that, it doesn’t make the acceptance come without an inner battle with myself.
I have also been doing a lot of reconciliation work with myself, as odd as that seems, I am and do fully accept that not all people who we care about, care about us in the same way, that many many actually almost all ( the rare ones that don’t should be truly treasured), come with expectations, those expectations can be varying and many times if you try to have a conversation about the expectations you will be met with either straight out denial that there is expectation, or the total lack of awareness or understanding of what expectations actually are and can be. For example many people will go see friends or family, often because they feel “they should”, which is in fact self imposed expectations and they are on the person doing it not the one on the receiving end.
The other thing often seen is that as long as you are providing or doing something that is of benefit, then the relationship stays in tack, once that changes the relationships often fail, people with Dementia of find this happens. As to others who due to illness, life events or something the role in the relationship must shift and often if we are not providing those with what they “want or need” then the relationship will not last.
Those relationships that just are, no expectations on anyones part, just the very real enjoyment of time spent whenever and however that happens. Those are the rare ones.
So I have come to a place where I understand that my dementia no longer allows me to maintain the roles I had in many relationships and many of those relationships have not survived, the ones that have are because the other person in the relationship understands that I can no longer do much of what I once did and they are happy that we have time when and as they can, without placing expectations ( known or unknown) that I cannot meet. I treasure all those relationships. It also lent me to think back over my life and really look at how and when relationships changed and often it was when there was a change in expectations, whether mine or theirs. The nice thing about doing all this review is it leaves you feeling settled, no anger, no resentment, you acknowledge the hurt, the pain and you understand differently than you once would have.
It also makes me think about how often we have over our lifetime heard people as they were aging or after they became ill, say “they never call”, we then put it aside as well they are busy. What I would prefer is that we teach our children as they grow that as we age it becomes more difficult for the one aging to make the calls, remember dates, etc. and so as our people age it is our responsibility to make time for those calls, not to just assume that they older person doesn’t have anything to do that they could call.
Life becomes more exhausting just doing the daily life things, so the younger ones should be doing the organizing of family events, of staying in touch. I was always my whole life good at staying connected to others, but I no longer manage it, I have requested addresses and phone numbers more times than I care to think about only to have no idea what I have done with them. So those days are done for me, love to have someone call, or stop by for coffee or tea, but I cannot organize or facilitate it. The hard part for me is I have no one to pass the torch too.
Oh my brain has so much floating around so I am trying to capture it, its Easter Monday, many are just ending a busy weekend. Mine as been a mixed bag, due to TIA”s, my dog is slowing down, and I am needing to give more time to her, and then there is that part of my brain that somehow convinced me that I needed to challenge myself more, it would be good for me, my brain is not getting challenged enough, oh I hate when my brain tells me these things.
Because then thats exactly what I try to do, so Friday I thought I would make my Easter Bread, as most of you know, baking and cooking are not something I try to do much of anymore. But my brain convinced me that it had a couple quiet days so it was the perfect time. So I very methodically arranged all the ingredients, its a long process to make it, finally it was set for its final rise, it somehow felt like it didn’t rise as much as I thought it should, but when its time was up into the oven it went. It came out tougher than the tires on my car. I was so upset, so angry at my brain, not at me, at my brain. I went to bed fighting the fight between what my brain was telling me and what I was feeling. Saturday morning into the garbage it went with a thud. Now I was mad, now I was determined to show my brain, but then suddenly something hit me, the rise, it didn’t rise because my house was to cold, ( everyone always says my house is freezing), thats why my bread didn’t rise, so I promptly relented and turned the heat on to warm the house, convinced I would make bread, so I decided to make a Sweet bread, this time I had great success, pictured here. But instead of my brain being satisfied it becomes a tug of war, part of me thinking thats enough for one day and the other part thinking no you can do more, so more I did
By the time I was done, I had made two lemon/orange poppyseed loaves ( my own version of a lemon poppy seed loaf.) And a lovely Focaccia Bread.
These things may have been things that I would have done in the past without much thought, but why oh why can my brain not be happy with the occasional success, instead I pushed until I exhausted my brain, drained it, recharging will take days, but my fight with one part of my brain wanting me to push and the other wishing it wouldn’t because the aftermath ends with too many non functioning days, or with TIA’s. Maybe one day my brain and body will all reconcile.
The other thing that happened I got to have Sunday out in the woods, my friend and I went to one of the places we go a few times a year, the fire was lovely, roasting smokies oh so delicious, a thermos of coffee and yes freshly baked sweet bread. I am so grateful that he always somehow knows when I am in need of a trip to the woods, he understands my good and bad brain days, he new Sunday was not great so he new being with Nature is always restorative for me. Our relationship is one of those rare ones, no expectations, just getting together when it works, sometimes I choose the place, sometimes he does, we look at forestry maps and decide. He doesn’t mind that I want to stop a million times to take pictures and because I want to look at something or put my feet in the water. I appreciate that the relationship just is, no labels, nothing more than 2 people who enjoy time together. He also is always willing to help me if I need help, and as made many trips to the hospital to check on my during my many hospital stays, never because it was expected, just because he wanted too. I am blessed with some very unique and special relationships with some very special people.
So I hope that whatever you did this weekend you enjoyed yourself and I hope the week ahead brings us all some ways to spread some kindness and hope.