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.
Today is the start of the Easter Weekend, today is Passover for many for others they call it Good Friday.
Above the two pictures above are pictures of my mother, running through the bushes, dropping Easter Eggs with all the kids chasing behind. My mother throughout her life had a way of bringing people and community together. Her spirit was infectious, I was blessed to have been given the gift of her. I miss her every day, I talk to her every day and I know her spirit is with me always. Bringing people together brought her so much joy, sharing and spreading joy however she was able. Despite all she had endured in her lifetime, she never lost her ability to be kind and caring and her love of laughter and bringing smiles was something I aspire to be able to do. She was and continues to be my greatest inspiration. If I manage to become half of the person she was, then I will leave this world knowing I have done enough.
It’s funny because lately I have been feeling like I don’t matter, it doesn’t matter if I live or die to anyone but me, well maybe me and God. Then I found a poem in my mom’s handwriting, which if you new my mom, it was the strangest version of english you could imagine, she taught herself, but as kids we learnt to decipher it and I can still read her writing which I am very happy for, it is an ability I have not lost. I was reminded in that poem that my work on earth is not done, and she will be waiting for me when my work on earth is done and that in fact I do matter. It’s important because often we think if we aren’t or cannot contribute in the same ways we once did that we no longer matter. Or because we are alone that we matter less.
Often connections are lost, sometimes by choice or necessity sometimes for reasons we don’t know or understand, but being alone can at times make you feel like you don’t matter to anyone. But you do, if all you do is walk down the street and offer a kind word or smile to someone you matter, you matter to them in that moment, and all we have is this moment right here, right now. Often you will never now how much you did actually matter. I hope that my mom knew how much she mattered, how much she contributed and the way she touched so many lives, and that she matters still today, and that she will matter forever more.
So as we start this Easter Weekend, I hope you all know that whatever you do, wherever you are, you are enough and you matter.
I also hope as this weekend begins and many are having get togethers, with family and friends and that if that includes someone living with Dementia or any other kind of illness or disability, that you take a minute to chat with them to see how you can support them to attend, whether they can only manage an hour, whether is means you let them know if they need a quiet corner to retreat to that you are and have that available for them. Many times people with Dementia want to attend but an hour in they are exhausted, usually this is from all the many things many don’t think about, many conversations happening at one time, background noises and conversations, pots and pans banging. Really just what at one time would be normal sounds of a get together now overwhelm the brain. Just trying to follow a conversation can be exhausting never many multiple conversations happening simultaneously, it creates anxiety for many without any illness or disability so that multiples for those with and often creates a situation where many forgo events all together.
So take a few extra minutes before hand find out how to support someone to take part to whatever capacity they feel they can, and if they can’t, please don’t make them feel bad for it, instead offer to drop off some food or treats either before hand or after, and arrange for a visit in a quieter manageable environment with them. After all if you stop in all your business for just a few minutes and think about what you would hope others would do for you, then it’s really not that hard to do for those we care about. If they do manage to make an appearance, be happy to have them, be happy to accommodate them, be happy to have them leave when they deem it necessary.
We are always talking about the importance of self care, but often when people try to implement that, at times that seem inappropriate to us, we put pressure on them to ” just stay for a while longer”, or you don’t have to run away so soon, or you’ve hardly had a chance to talk to everyone, or just come for a time, and maybe through your eyes that may be, but through theirs they have enjoyed, and seen all they manage in this setting. Just let them know that they are cared about, that they are enough and they matter, no matter how much they are able to give or provide or be present for.
So I hope you all have an abundance of love and kindness showered on you this Easter Weekend, however you celebrate and with whoever you celebrate with. For me I will be spending it quietly with my little dog, who showers me with unconditional love every day.
I can’t explain why, but a need to go through boxes of old photos, while doing it i found a poem in my moms handwriting, I then found a letter from my grandmother, both of which I had no recollection of yet somehow I was meant to find them, it was like there was things in those writings that I needed to hear at this particular time. I’ve been somehow feeling like I don’t matter, in a very different and strange way. Yet somehow those words on the paper from them left me feeling so peaceful.I have been at peace in so many ways on so many levels , but in this regard it was a whole new and different level of inner peace that I have not ever felt. That I don’t remember those two things does not matter, that I was lead down this path of going through mementos a walk through my history because I was supposed to find them. We are sent and given messages if we are open to receiving them, I am grateful that I pay attention to those things, because it has provided me some pretty special and significant gifts, such as the very important messages in those words.
I have also spent a lot of time recently doing what I would say is getting my house in order. Different from getting my affairs in order, that was done and revamped as when I was diagnosed as well as reviewed and revised as needed. This was and is literally getting my house in order. Its like compartmentalizing everything in your house, ensuring you look at each thing, placing everything in a container of some type, all organized all accounted for, the walk through your house, both physically, emotionally and mentally, somehow necessary, needed. I don’t know why it’s all so important just that it is. It feels like a strange moment of time in my life., and I am very content and happy wandering this path at the moment.
I also am spending time doing things that have been forgotten and needed tending too. This also resulted in some realizations and gifts received in the most unusual ways. I have been for three years now been paying my bills through my banking system as soon as my disability comes in, its important because my income is so limited I have to keep close account of everything and ensuring things like hydro are paid is vital. I monitor my power usage weekly, so I don’t end up with bills coming in that are unmanageable. In March I paid as I normally would, a week later I didn’t see it on my account, I thought to give it more time in case there was a delay in processing somehow.
Two days ago my new bill came it still wasn’t showing, a call to BC Hydro, no they didn’t see it, I would have to go to my bank, so a walk to the bank, printout in hand of my account where it came out of, the lady at the bank so helpful, ensuring it was sent to them, that it did not come back with any error message, confirmation numbers, back home I came, another call to BC Hydro, a lovely gentleman on the other end of the line, I explained the problem. He could see that in fact every month it came roughly the same day, then somehow he noticed and said my account number looked odd, but that it had been coming to that same number for years. He put me on hold to talk to one of his managers, this is where it got interesting, coming back on the line he gave a little chuckle, he said well we have solved the mystery, we have found the money. As he explains to me that for three years now my funds were going to an account that didn’t exist, what, wait, how can that be, I have long known that I can and do reverse numbers and letters, that I see words incorrectly, etc, all part of my dementia, often I do it without knowing or catching those errors, and it happens a lot now. Apparently it was happening even before I was aware of it, I had put the account number in my bill paying section of my banking stuff wrong. Thats not the most interesting part, every month for the last three years a wonderful person in the accounting department of BC Hydro had been taking that payment and transferring it to my correct account, a little angel looking after me without me ever knowing, but because of internal changes, this person was concerned they would not be able to continue to do this so had sent a memo through asking customer service to have someone contact me and help me get my account information set up correctly in my banking system. Thats what they were in the process of doing when I called in. Wow just wow, we both laughed at how amazing this was, I asked that he ensure they all were thanked for being my angels all this time. A Huge Shout Out to the wonderful people at BC Hydro.
We went on to talk about my dementia and how it can and often does create havoc for us because of these types of things. Having him take the time for me to open my banking information, helping walk me through where to find the area I needed and ensuring by triple checking that we had in fact corrected the information, speaks volumes of how with a little time, patience and kindness we can live independently, a great teaching moment, a great moment of being able to acknowledge all those angels who quietly go above and beyond every day. Extra care will be needed regarding writing out numbers, words etc.
I think much of what is happening is just to help me navigate new changes in my brain, as my dementia keeps ever so slowly progressing, I am grateful it is of slow progression and I am hopeful that if I keep doing all I can to help myself I will get to complete a couple more things on my life list, before I call it a day.
Yesterday I spent the day going through a box of photos, planning on putting them into some type of order in photo sleeves and putting them into binders. This took me on an emotional journey that found me, laughing and smiling and falling apart and breaking down and crying, crying like I haven’t for a very long time. Waves of sadness washing over me. It had me looking at my life suddenly through a different lens. So many mixed emotions, so much happiness in those photos, yet great sadness at all that was, yet deep gratitude for despite all the hardships endured, I feel as though I have had a life well lived. Many things did not and were not part of my plan, but one thing I know is it is exactly as its meant to be. I cried for relationships, whether it was with a partner or friendships or family that failed, understanding now that they were never meant to be forever, that being thankful for what they brought to your life or you to theirs is what it was meant to be. It took me back to A Reason, A Season, A Lifetime. I will always miss some of those people, some of those relationships, and for those who are still alive and well, I thank them all for the lifetime of memories good and bad for they will be forever part of the life events that shaped me into who I am today.
My Dementia has most certainly allowed me to feel my emotions, perhaps I even operate from more of an emotional/ feeling place. So though many think people with dementia don’t remember, in fact they do, they may not remember the name or place or different places of things but they will remember how they felt. I was flooded with different feelings today, anger, joy, sheer delight, and sadness at some aspects of things that brought such peace and fulfillment that I no longer do, one of those things is gardening, planning, designing and doing all the hard work, hauling soil, hauling bricks, back breaking work, but happy to build beautiful seating areas, areas that were peaceful, relaxing places to be.It wasn’t just the end results, it was the digging in the soil, watching and nurturing things, how each place I created was allowed to take on its own personality, I miss it so much, I cried a lot about that aspect of things.
But then somewhere in all those tears I realized how fortunate and blessed I was to have been able to leave something beautiful every where I lived for others to enjoy, how grateful that I am that I was strong enough to work a full time job, work a second to fund all my lovely projects, and physically strong enough to do all the back breaking work without ever hiring anyone. I can, when I look at the photos still feel how it felt while I was doing it. So I sit in gratitude, for all those people, places and events. When I am missing having that place to be creative while connecting with nature, naturing my heart and soul, I think thats the hard part is not being able to feed my soul in the ways that brought me so much joy. However I do believe I have found other ways, like all my walks in nature, all my drives out to the forest to sit with nature. Its not my own little patch of earth but it is something, and I can be grateful that I can still find joy in it. I will post below a collage of pictures of some of my projects and gardens to give you a taste of the things that have brought joy to my life.
The second thing is about a program I watched last night on our W5 program, it was about the MAID ( medical assistance in dying), program here in Canada. It is something I fully support, I am glad to see BC, ( the province where I live, leads the way here in Canada). This program was well done, They followed a couple through to the final moment, and listening to them both, I totally related to what they had to say, perhaps why I have been such a believer in the MAID program. i believe we often, because of the winders of medicine keep people alive with no quality of life because we can, because it allows us to hang on, instead of being able to accept and honour death as much as we do new life. If we embraced and honoured death and the one lost instead of trying to prevent ever having to deal with feeling the loss, we would all be better for it. I want the maid program as well, however living alone, makes it a bit more of a challenge. My biggest concern is that I will suffer that debilitating stroke, and that I won’t have the ability to say I want this or that day to be the final one. Its likely my absolute biggest fear, being forced to be alive, being forced to continue to breathe with no quality of life, forced to be at the mercy of others, in a system that prompts the doing of tasks over the person and care and quality of life. Its why I speak out so loudly against A system that is so broken, it is in part all of us in societies fault we allowed and contributed to a society where $$$$, trump everything, including doing things that are the humanly decent thing to do. I have letters dating back to the early 2000’s, between myself and CEO’s of health authorities, where it is admitted, they weren’t listening, they still aren’t, because everything is still based on $$$$ and nothing else. Human cost is less important than the ability to make money. I wont quit fighting and again I will say, I know and respect a lot of people working in this sector, they are good people, great people, trying their best to do their best in a system that fights against it. I feel for them, I understand their stress and frustration, so when I advocate for changes, it is for those in care, but also for those working in care, that one day they actually again can provide the care they so want too.
So today I will go for an early morning walk, while the weather allows, then I will busy myself preparing for a pre recording on Tuesday of my speech for the ADI conference, I will work on another that happens in May which is really important as it is directly related to our long term Care in Canada, so you can rest assured a will spend a great deal of time on it. I will also be spending the day with a couple of classes of students who will eventually work in Long term care, something else I have been doing for years and will continue to for as long as possible.
As I leave you all today with this crazy mixed up jumbling of thoughts, as promised a collage of some of my works, along with leaving you with one photo that made me smile and laugh at the fondness of this day. It was taken in 1982. Oh the fun of it all.
Its been a rather peaceful and quiet week, somehow I thought it was set up to be busy with projects and meetings, some I made it too others forgotten or I was on the wrong day, or wrong time, but I busied myself organizing cupboards and drawers, lost in my own little world and it was a happy place to be. I even managed a couple of visits with a couple friends I haven’t seen for quite a spell, of course it was at their thinking to make it happen as I loose all track of time days weeks months. . I had a chat via messenger with another friend last night who also lives with dementia and she wondered how I was, re changes etc with my dementia. I said at one time I would work really really hard to try to navigate with as little of the challenges being visible to others, it was exhausting, I said I no longer do, if I mess up my words, my thoughts, make mistakes, forget or whatever, I just don’t worry about it, it is what it is. Its too exhausting to try to fit into a world that everyone thinks is normal. My days are spent doing things that bring me joy, that make me happy, yes something as simple as organizing some cupboards can bring joy. Pictures below.
The world of advocacy seems to be shifting and changing, the projects I am involved in are important, there is many great ways to try and make an impact. Sometimes even in advocacy the seemingly smallest and simplest work is and can be the most impactful, and leave you feeling like you are making a difference in ways that really matter. I have been blessed to have had the opportunities to make a difference both globally and nationally, and more recently much more at the more local level. Even though I had to change things due to my extreme health conditions last year, this year I am happy doing what I am doing and not over taxing my system.
I guess we are always learning and growing despite health challenges, despite dementia, we still have the capacity to learn, and I am definitely learning. And I may not be doing the things I once did, or in the ways I once did, but no matter if its advocating, or organizing if I can feel at peace then I am doing exactly what I should be in that moment. As long as I am not putting myself in harms way , and actually even if I am, I can live at risk, isn’t life a risk for each of us each and everyday anyways. We have no guarantees in life, whether we have dementia or not. I am grateful that my dementia got me off of the hamster wheel most of the world lives on thinking they have to be busy all the time, don’t stop long enough to hear yourself think, don’t spend anytime alone. I understand myself in ways I never would or could have if I was still running the marathon on the hamster wheel.
There was a time I kept myself so busy, go,go, go, and even when I convinced myself I wasn’t that “I was taking a vacation,” it was busy, no time to hear my own thoughts. Dementia changed that and after the first difficult few years trying to figure out what and how and who I was know, a difficult and challenging time, devastating in many ways. I don’t believe it was until actually the last couple of years that I started to see, recognize and acknowledge many things that the hamster wheel had allowed to always be pushed to the background. Unknowingly doing damage to my health. Traumas, losses, heartache, sadness, unresolved grief, Always thinking I was happy, but now understanding there is a vast difference to thinking we are happy and actually being happy.
Its that deep seated happiness and peacefulness I am talking about, when you don’t need to keep yourself so busy that you can’t hear what your body and soul are telling you. I love the peacefulness, the quiet of my mind, body and soul. I love that I took all those deep buried things out and examined them , accepted they are part of who I am, looked at the good, bad and ugly, and could then see the things that can and do still bring so much joy to my days, from the crows, which I love to talk to and listen too, to watching the seeds sprout offering hope for another season. I have my dementia to thank for that, for kicking me off the hamster wheel, to bring me to this place.
I know it is only the policy makers, the people who decide how and what care can and should look like that can disrupt that, so my advocacy must continue, because I cant stand by and allow anyone or thing to disrupt this peaceful place within me.
Yesterday, I messaged a friend, I hadn’t had a good chat with him for quite a while, he said yes lets do a video coffee chat. He was going to message as soon as he was ready, I was really excited to catch up with him. But then, instead of just sitting and waiting, I got distracted, turned on my music started dancing, then started to tear my living space apart to change it around, which lead to deep cleaning while dancing and singing my through it all. Seven hours passed, it was blissful, I never sat for seven hours, just swaying to the music, cleaning all the while. I then realized I had yet to ear anything so had a little snack, three hours later I looked at my phone as i was getting ready for bed, there was the message from the morning from my friend saying he was ready for our phone chat. I messaged my apologies right away, especially since I had entiated the chat. He understood, but its just shows how I no longer have a a great deal of being able to stay focused. I laughed at myself, nothing else to do, we will try this week again.
Then this morning, oh what a day, I got up got ready for the day, there on the counter was the peanut butter, that damned peanut butter from the night before, I had wanted to have a peanut butter sandwich for supper, the problem with peanut butter, its all natural, the oil comes to the top, trying to get it stirred was ridiculous, impossible.
So this morning I decided I would but all the peanut butter through my blending machine, somewhere in the i decided I would turn it into cookies because, then the peanut butter would no longer create stress, a simple three ingredient recipe, got all the ingredients out while the peanut bitter was happily spinning around. Have you ever tried to get peanut back out of a blender, oh my gosh that damned peanut butter was to much to bear. I thought just walk away, leave it for now. So I thought I need to go to the store, it was something I really needed, but had been putting off, so off i go, and then for 40 minutes sit in the car trying to recall what it was, finally though well I’m here I’ll look for a frying pan, no idea why that came to me, but while looking for a frying pan, I realized I was needing feet for my chairs, by the time I got home, I was late for a forgotten meeting, tuned in for part of it leaving saying I had another to attend, except I had all the times wrong the other one was just ending, oops more blunders.
So I eventually made it to my last meeting for the day, then I turned up the music to dance, and as I danced there it was the damned peanut butter, so I thought thats it your done, and I danced my way through making cookies, my friend called said what are you doing I said dancing and making cookies, she said omg, she said you don’t even eat cookies, I said I know but the peanut butter had to go, just so happens she loves peanut butter cookies, she will come Wednesday, and you can rest assured she will go home with peanut butter cookies. We laughed about it, She said whats wrong with you, I said I have no idea, I have no idea why Im doing anything Im doing, we laughed some more, she said I have no idea either, I responded maybe its my dementia, we laughed some more, laughter is truly the best medicine.
Years ago i remember taking courses about ” don’t sweat the small stuff”, well dementia teaches you in quick order those lessons so when nothing works turn up the music and dance.
“I’m not done yet” has been my motto since the start of this dementia journey, it still applies, theres still a lot of dancing left in me.
Today, I felt frustrated with myself, angry at myself, as if somehow this new step down is something I could or can control. A lot of changes happening and although I am from most people’s view still doing well, I know within myself when changes are happening. I am not sure if that is a blessing or a curse, sometimes it feels like its both at the same time.
If I am still able to recognize changes then I am still only somewhere in an early to middle stage, heading more to the middle stage, if we are measuring by the scales others use to judge where we are in the whole process of our dementia. I hate using scales of any kind for dementia because it wanes from day to day, but for the sake of trying and unable to find better descriptors we will stick with that.
So yesterday, my heart started misbehaving again, I couldn’t figure out why, then last night I realized I had not taken all my heart meds in the morning and I had not put my nitrogen patch on…big oops… oh well at least I know why, I guess my heart was trying to tell me it needed its juice, so more reminders maybe, or does it even matter?
I also increasingly have trouble transferring thought to action, as in I think about doing something but don’t have the ability to actually take the steps to do it.
My eating habits have taken a huge turn as well, I have to set reminders so I remember to eat at least something once a day. I don’t ever feel hungry, I do think about food at times, but to put the thought of eating something into the action of eating again challenges me. Its mostly finger type foods now, which is fine, works for me, I still am eating something, I am not sure if any of it will make changes in my body structure, or weight, that really doesn’t matter either, the only thing that matters is that I eat something, because it is something that my brain is managing not me.
I am also self isolating more, because it’s where I am happiest these days, not that I don’t want to see someone or visit with people I do, but when and how those things happen are more important than ever. It is also something that I am ok with, actually feeling quite peaceful about, to much noise and confusion is just not worth what it does to my brain and then I suffer the consequences. So it’s important that others are able to meet those with dementia where and how it works for them so they can truly enjoy the time they spend, instead of trying to entice them into doing things that really are of no benefit any longer.
The other thing is I used to be a very very decisive person, make a decision and act on it, not procrastinating for this girl, never one to over analyze things, whatever it was, look at it and act on it and then it would be done. I am now sitting unable to decide anything about anything. Over analyzing things and then just doing nothing about anything. Simple things to more complex things, go for a walk, don’t go for a walk, hours can pass and I will have done nothing regarding the walk, I can also not, no matter how many times I look at my lovely dementia clock stay orientated to the day. Yesterday, I thought it was Saturday, it was Friday, then I was operating like it was Sunday and I got up this morning thinking it was Monday, its Saturday.
Regardless of all these changes I notice more and more, others likely would not unless they spend an extended amount of time with me. It does not matter if they do or they don’t, as I am happy as I am with all my blunders and fumbles each day.
None of these are things that are much more than a nuisance, but it certainly does and can cause moments of anger at self and frustration with self. Forgiveness of self is imperative and the ability to laugh at one self is vital. Humour about it all is a saving grace for many with Dementia, I think. Many of us with dementia laugh together over all our fumbles and we wouldn’t like to be laughed at, but most certainly to be laughed with is acceptable. It helps us navigate what would and could otherwise become so troubling one would end up depressed.
As we awake to the start of another month, April, wow, feels like we were just at the start of 2022 and somehow we are already heading into the fourth month of it. In many ways I want to slow the year down, yet in other ways I’d like to hurry through it, so that perhaps things like the war being raged by Russia could or would some be over. April is my birth month, a month that we usually start to see a lot of things growing, things starting to bloom, a month that somehow feels like a month filled with hope and promise, and i truly wish that we all can be filled with much hope and promise of better days ahead.
Yesterday, I found myself so angry, wondering when and if we will ever get to a place where care homes become actual care homes, instead of warehouses, where our elders are given the time, respect and cared for in ways that allowed them to actually and maintain there dignity. when it actually is about the person and not the tasks. I was upset about it all over again yesterday, because my neighbour came to ask for help, her husband is in care, he does not have dementia, he is of sound mind, but a stroke left him requiring 24 hour care, she is not able to provide it, so going into the care home was the only option. She was supposed to have a meeting regarding concerns around care and treatment he was and more wasn’t receiving. She wasn’t sure what to do, her husband felt that they should not do or say anything because the repercussions he would end ip bearing would likely be even worse than what he was already enduring. That is beyond words, beyond description, yet common place, people afraid to speak up, residents ( patients), left to bear the weight of a system that has brought about the acceptance of abuse and neglect. She told me that the week before a staff member had yelled at them both, because he needed to be toiletted, that they needed to learn and understand that they are too busy, to be being called for these things. The tasks, have taken priority over the care of the person. The bureaucracy, the business of care, has left out the most important element, the care. Care and Respect for our elders should not even have to be thought about, it should be something that is an integral part of everything we do everything we are, instead our elders have just become another throw a piece of society. Its so disgraceful. The people who are actually working within the system who do actual see the person, who do actually care, are so often left exhausted from trying to offer some form of quality of care, a little bit of dignity in a system that fights against it. The pandemic show cased how broken the system is, there is a continued promise of change, yet the horror stories keep coming, yet we still have people who have to be afraid to ask for the most basic care, which all creates further costs to a health care system that is crumbling. How did we get here, I’m not sure, but I sure hope we find a way to something better. I know for sure the MAID program is more and more appealing to many over being but into a system that neglect, and abuse are the norm, where paperwork, and other tasks trump actual time spend offering care, oh and how did it become a forgotten element that the time spend with someone is part of care. I know many will have many reasons why it is what it is, but if we get rid of all the bureaucracy, quit making things so complicated, strip it down to basics, lets start caring for people more than $$$$.
I borrowed this piece below from someone I know, she posted it today it was so fitting.
So I could write a book on this topic, but I will leave it there. so as we leave March behind and forge ahead into the hope that April brings, I find myself noticing more of my decline into my dementia, subtle changes and challenges, I am grateful that I have had another year and I am looking forward with hope. I hope April finds you all feeling hopeful of a brighter days ahead.
Its interesting, that the age of technology and social media has for so long been touted as such great tools, the way of the future, will make things so much better, easier, on and on it went. But lately that view is seemingly shifting. Its created a society where social interaction and communication has been gone from face to face discussions to texts and messenger messages. Children don’t entertain themselves, they are entertained, movies play in the car or they have electronic games. It also has meant there is no real down time, and people use devices as a means to distract themselves from alot of things. In the realm of dementia there is much talk and work about how wonderful technology is, I had an abstract accepted for presentation on Technology the good and bad, to present at the Alzheimers Disease International Conference, in London England, but I have withdrawn it, and may present it at a later date, or who knows maybe I will share it here. Its not that I disagree, I think technology has many great uses, but I also believe we must be careful that we don’t forgo human interaction and contact, its a slippery slop as to how when and where technology and devices should be used.
There are some uses that are great whether you live with dementia or not, built in gps, so if we are in trouble we can be found, automatic 911 calling if it detects a fall etc, navigation systems. These are all tools which can be great assets for people. The pandemic showed us how much we can do by working from home, freeing up more time for ourselves and family, zoom, video calls, FaceTime, all allowed people to stay connected during the pandemic, but we can and should not allow it to become the norm so we provide less actual social engagement with and for people, and slippery slopes abound.
Another interesting thing that came to my attention the other day is that they are now finding how damaging social media is for and on men’s self image. I am not really surprised by that for years and years, actually even when I was young, we, as in women and girls were always subjected to media’s pushing how we should look, dress do our hair, our self image constantly compared to what we were being shown and sold. It is no different now just more prominent, since the onslaught of social media and technology bombarding people. So now they are seeing it actually effecting men, creating mental health issues for men, so although I hate to see this happening to anyone, its interesting that there is such concern because of the way it is impacting the male population. Women have been saying it for generations. So another of the slippery slopes of the use of technology and social media.
I think there is many people who are limiting their time and use of all of their devices, this includes myself. My blog is done on WordPress and links to the social media sites, this allows me to write my blogs and not get distracted by all the social media stuff, allowing me to still get it out to those who enjoy it. Yes I still use social media I am just acutely aware and monitor how much, I have shut the data off on my phone, I often leave it at home and often shut it off completely now. I am also aware of how important it is for me at other times, and how much technology continues to help me live alone. But being isolated for over two years during a pandemic, and now noticing as we are trying to come out of it, how truly isolated I have been, and how now I struggle with social interaction. Part of it is expected in the progression of dementia, but a large part due to the isolation created by the pandemic and now in that isolation is where I am most comfortable, it has become easier and easier to just be content in my aloneness. I find it exhausting trying to meet expectations, as there truly are very few people who fully understand the constant work it takes to manage a day. So it is now where I struggle a great deal. I do not feel safe in the mainstream of society anymore so in trying to step out into the world it is and will be in the smallest of steps. There has been a lot of changes for myself and many others so it will be different for each of us although isolation was and may still be needed for the foreseeable future, we have to try to ensure we don’t allow the ease of using technology to stay connected, to create a world where we are becoming less and less to be comfortable among others, and we loss skills like being able to sense when something is wrong, to read peoples faces, pick up on emotional signals, knowing and understanding body language, all those things are at risk, they are all vital skills to have, we can only learn and nurture and understand them by being part of and interacting with society.
I hope we all take the time to really look at the bigger and deeper issues around all of the technology, and work to find a way to balance it so we don’t just become a humanized robot ourselves.