Category: Advocates

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.

Feeling like I have much to be grateful for.

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.

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.

Chaotic, disjointed, and out of place, is how much of the world and those of us living in it feel at the moment, at least from where I sit. Trying to find our way out of pandemic, yet at the same time waiting to see what it’s going to do next. Wanting to rejoin the rest of society to some capacity, but not totally comfortable too, it doesn’t feel like a very comfortable place right now, and then theres the underlying stress of a war that rages and a crazy man, not sure what or when he throw more at us all and knowing the longer he is allowed to continue on this path, the bigger impact we will all face.

It’s hard to watch what’s happening, doing small things to help support Ukraine, it doesn’t feel like enough. Even though we all must get about our days, everyone I talk to is tired, most have now explanation for why, except if we truly acknowledge that what we have been through and what we are currently facing and that it creates a subconscious stress in all of us, then we can understand the tiredness. It’s like being thrown into a blender that just keeps spinning around and around and you just want someone to turn it off, the problem with it all is that it is out of our control. That what makes us tired, the constant chaos.

I am going to be 63 next month, and after being raised by a mother on her own with four young children, the lessons she instilled on us are serving me in ways I never thought I would live to see the need for, but here we are, and I have used those lessons to get through some very challenging hurdles in my life, like the death of my husband, I was ill prepared to be a widow at 47, then dementia at 56, but those lessons she taught me served me, helped me survive them, to move through it and come out of it all different but still standing and know the lessons have given me the foresight to not be foolish enough to think that we won’t ever have to worry about food or basic necessities, so I have taken the lessons and prepared myself for those hard days that are staring at us. If they don’t come to fruition it will be worth celebrating, but at least being as prepared as I can allows me to know I have done my best to take care of myself and none of it will be a waste. I hope everyone is doing what they can to ensure they will get through the coming times as well. I pray for peace each day, I pray love carries us through, I hope kindness prevails.

In all of this uncertainty it feels like there is things shifting and changing in other ways as well. The world of advocacy feels like it is changing, maybe it’s not, maybe it’s me that is changing but it most certainly feels like it is. Like there is so many people trying to get a piece of the business of Dementia, and that is how it feels, like it is the “business”, of dementia that has happened, like we are losing the human aspect of dementia to the business of dementia. It has become about how each organization can get a piece of the pie, better known as funds, funds that should actually be being used to help those living with Dementia, but the bulk goes to the running of the business, and it feels like there is getting to be more and more organizations popping up, I for a long time said we needed all the organizations to sit at the same table, work out who was going to take on which piece and aspect to the betterment of all with Dementia and focus on those aspects, instead, more and more start up, everyone competing for the same $$, the biggest losers in all of this is the actual people living with Dementia.

It’s causing many of us who advocate rethink how and when and where we are advocating, and at times wondering if there is any point in continuing with it at all. The last couple years have also made many of us realize we must also put as much time into our everyday life and living as we do our advocacy work. We have to remember to live life, our true and authentic life, if we truly want to advocate and show how we are able to still have a quality of life.

And for now we have to be ok, with all the baby steps as we step into these ever changing times. Dementia teaches us to change and adapt almost daily, use it to help you as you forge into these unknown times. Just know that what ever you do is enough.

I am forgoing presenting in person, at the ADI Conference in June, in London England, and although two of my abstracts have been chosen, something that I am very proud of. I am going to do one via prerecording, the other I am going to withdraw for another time, it is enough. It takes a lot of stress off and that means its enough. I am at peace with my decision, although I would love the opportunity to see so many and meet others, this does not feel like the right time. I feel good that I am still presenting, and I can feel good that I have done what is best for me at this time. I can hope that another time will see me do in person again.

Just let love and kindness help us all build bridges to see better tomorrows.

So this swirls around comes and goes, sometimes sparked by and in conversations, other times just by taking part in things and listening, and watching and maybe more than is realized at times and then when sitting in the quiet I think about these things. My views won’t align with everyones and that is ok, actually often my views don’t align with others. Sometimes they are in perfect alignment, and neither is right or wrong.

So when I think about Dementia/Alzheimer’s organizations and groups in context with controlling the narrative, it makes sense in the simplified form that they want to control the narrative for that is how and what they use to meet the organizations goals and agenda. They need to have goals and agenda’s, and the people who are in paid positions should be working whole heartedly to help meet those goals and agenda’s. Those goals and agendas often come on the shirt tails of people living with dementia. Working with people with dementia is great and needed, only those living with the illness have the inside track on the illness and all that it entails.

We, the people living with dementia must just always be careful that we do not allow our narrative to be controlled, advocacy means we are striving to help make changes, but if we have to follow someone else’s narrative instead of our own, then we are no longer actually advocating we are pushing some else’s agenda.

We can be loyal to an organization and still true to advocating in ways that align with who we are, as long as we are not pushed to align only with this organization or that organization or this one’s agenda or that ones agenda. As an advocate, we should be able to work with many organizations while staying true to self, we should be able to work with many groups and organizations so that the voices of those with dementia are heard not controlled.

Working with and in ways with as many as we feel we can manage on a day to day basis, this also holds true for working with research groups, we all have varied interest, and we should all be encouraged and encourage each other to participate in research in ways that help us to feel like we are valued, that we have purpose that we are making a difference.

We also need to be encouraged to look after ourselves first and foremost, advocacy can and often does take over, because we are passionate about wanting to make a difference. Because it does give us purpose, sometimes, we forget about the other aspect of who we are, we are still people, with outside interests, needs and wants.

It sometimes becomes easy to put all those things on the back burner, I wonder if that is partially because we go through such devastation and lose of self when we are diagnosed so when we and if we find ourselves in a place where we feel valued and that we have purpose. Which is something we all need, whether we have dementia or not. This can and often leads to a situation where we feel we need to do more and more, we put this pressure on ourselves and it is then that we forget the other parts and pieces of who and what we are. We are not our illness, but sometimes we become so caught up in advocating about it, that we end up so entrenched, it’s as though it’s all we are, so we become what we advocate we are not.

There are many fine lines to walk, sometimes we cross lines without ever meaning too, this can happen for those without dementia as well. But it is important that when we recognize that we need to pull back, step back, change direction, change focus, then we need to give ourselves permission to do so and hopefully all those groups and organizations will encourage that, and be happy to have us doing whatever we feel is manageable and allowing that to ebb and flow just like our dementia.

We need to be loyal to the point of speaking in a good manner about the groups and organizations we work with, that also doesn’t mean we can’t speak about about things we think are wrong. Both are important. Finding the balance in it all is not always easy.

For me personally I am working with many, I am deeply fond of some, but hopefully have good working relationships with them all. I am not always popular for I do stick to being true to myself, and so if I am not or don’t fall into alignment then I won’t be popular and thats ok, its more important that I remain true to who I am. I truly appreciate the groups and organizations that allow me to be me, Christine, the person first and foremost and then Christine the Advocate, because, being an advocate is just a small part of who and what I am.

I am grateful for the many different ways different groups and organizations have enriched my life, I hope they know that. I hope they know that whatever and whenever I agree to work with them on various things in various ways, that I do so with a good intention, giving the best I have of myself while doing so. I hope that they can and will continue to honour me when I have to pull back, or forgo certain things.

I have to take care of myself, my mental and emotional well being along with my physical well being, my heart and soul. So that I can continue to advocate for a long time.

I also hope that we allow others the grace to do the same. Advocacy is not about being a star, or recognition or being the best or better than anyone else. Advocacy is about all working to the greater good, for the good of many. Knowing and believing we have done our very best to that end should always be enough.

I have been privileged and blessed to have met many great people, made many friendships, since my diagnosis and through all my advocacy work, through all the many groups and organizations that have allowed me to be part of their group. Every time I give a talk, or do a presentation, I meet someone who reaches out, who in hearing their story reminds me of why I continue to do what I do, that is always enough.

I hope that if you advocate you remember to look after yourself, and that it’s ok to do that, I hope if you advocate, you remember why you are doing it. I hope one day things will be so good no one will have to advocate but until then I wish you all love and happiness and hope that whatever you do you do it with a large dose of kindness.

Today spring has arrived, a time of renewal, the freshing up after the earths winter sleep. Its also time for us to refresh our lives, our dreams and goals. This seems like a daunting task as we start to slowly come out of the pandemic, and war is raging. There is so much anger everywhere, fear grips many. We have lived life for a few generations now for the most part without ever having to endure truly hard times, or go without, or do without, we have been living in a time of the throw away society, and just go get whatever you want whenever you want society, the wine and dine society, the grab and go society, grab breakfast and coffee in the way to work, don’t pack your lunch, just go grab lunch out, too tired to cook, pick something up or better yet have it delivered. Then we ended up with disasters, creating supply issues, we often look to blame someone, usually governments at all levels, but the fact is we are all collectively responsible, we have contributed to global warming, we have polluted our waterways and oceans, with all our throwaways. We quit gardening, we quit a lot of things that helped make healthy families, and communities. our young people have lost hope, mental health issues abound, addiction issues abound, we have failed as humans. We decided it was more important to have more, do more, it fractured families in unexpected ways because we believed and chose to believe that climbing the corporate ladder, bigger homes, fancier cars, measured our standing, instead of it being about our strength of family. The pandemic brought more people back to family, baking, canning, spending real time together, the coming time will likely increase that, as we see further supply shortages, increased prices for everything. So as we spring forward things will continue to change, it wont all be easy but perhaps the silver lining will be that it will bring us back to a more balanced way of being. I am not without a huge amount of hope going forward. I love this time of year a time of renewal, and I wish you all a joyful and peaceful spring.

Next:

Sometimes, ok well often times, I forget things I have done, projects I have worked on etc. But I have discovered, instead of being upset by it, or stressed by it, to just now that maybe someday in some way, something will trigger a reminder. By just settling into the fact that I won’t remember much of what I do, created space for some unexpected surprises, when someone lets you know something you’ve worked on or contributed to is complete, its like such an amazing moment. First its like, you’re like really I did, then the fits of laughter, then its the anticipation to have a peak into it. It truly makes you almost giddy. This happened to me again last week when Gincy Heins,, messaged me, to tell me the book I contributed a piece for was going to be released the following day, and that my piece was the opening piece for the book. oh what a surprise, not only had I forgotten about the book being put together, I had no idea what I had written for the book. I have now read what I have contributed, I am really happy with what I had written, and the book is a lovely piece of work, with great collection of inspiring, heartwarming pieces. Gincy did a great job gathering and getting people to contribute. Below is a picture of the book cover, it is available on Amazon. I am truly grateful for the gift I received first by being asked to contribute and secondly with the wonderful surprise of its launch. Here is the cover:

Next:

My latest project has been working on my new vision board, I like them for a few reasons, firstly the are fun to do, they are artistic in themselves, we learn about ourselves as we do them, I have created them over the years, I actually first learnt about them as a tool to help people going through difficulties. It helps them ” find themselves” in a sense, for someone on the outside there is much you can learn about a person in the vision boards. I will post pictures below although it is not complete yet. Its a fun project to do with young and old alike. Ive done them in the past where we have done evening get togethers where we all worked on ours and shared a lot of tears and laughter, and had many very deep meaningful conversations brought out by working them this way. This one I am working on presently is weeks in the making, its a positive outlet for my mind. I am doing all I can as I have been through the pandemic trying to ensure I do things to keep my mental health in check. Which whether we have dementia or not is so important, it should always be important but having been through the last two years of the pandemic and so much uncertainty surrounding us, on top of living alone, it is vital for me. Soon it will be warm enough for my bike to be out, I am looking forward to that as well.

Whever you are I hope this first day of spring allows you time to look forward with hope.

Here is my vision board: