Author: WWW.Chrissy's Journey.com

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

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

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

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

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

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

Time is Precious, Time is fleeting, time heals all, time stands still, time goes to fast. But does it, or have we over time just convinced ourselves that all those things to be true. The sun comes up, the sun goes down, the seasons change, those things have since the beginning of time remained the same, so then time has changed nothing, we have changed and adapted time, what it is and what it does to suit our lives.

Life events change us, some say many of life’s events make us stronger and more resilient, or it breaks us, that what we need is time. I believe it is time that continues on and we just learn to continue life, absorb the events that happen in our life, and we life with them, yes the impacts may change and lesson, but they are still there, they have, will and do change us sometimes subtly, sometimes in not so subtle ways. We may become, kinder, gentler, more empathetic, more compassionate, we may become, bitter, angry, pessimistic, it is grace of healing that can and does help decide how the impacts will be. For the events don’t go away, they remain, a piece of the very fabric of who we are, it is the gift of time that allows us to properly absorb, process and manage the life events. Society has become so rushed, in such a hurry, trying to force us to not needing the time for proper healing. We hear often people say well you have to get over it, move on, its over, in fact it is not and every person no matter the event will find that event settle into being part of their life in a different time frame, in a different manner.

There was a time, when we did things by the rise and fall of the sun and moon, and by the changing seasons, then we decided to try to adapt things to get more time , change the clocks to get more time in a day, more daylight hours, more time to work, truly it is psychological, for the only thing that changed was the hands on the clock, the sun and moon still rose and fell as it always had.

Why or does any of this matter, I don’t really know, except that I do know that our lives over time, who we are, as to who we were changes over time. We only have so much control over any of it, some of life’s events are out of our control, others we are responsible for, how we manage those has more of an impact on how they will impact our lives over time than time itself.

One big life lesson, we always want more time, we always think we have time, Another time, next time…except the only time that is real is this time, this moment. How and what happens in this moment, will impact all the future moments we may have.

My mind seems to be swirling these days, aware of so many deep feelings, and feelings are the one thing that never leave someone with dementia, in fact as other pieces become more challenging feelings are the thing that brings things to us or back to us. How things, people and or events made us feel, we may forget some of the particulars, but the feelings associated with them are so acutely sharp, sometimes it feels like you can’t breath. Somehow feelings seem amplified. I have no idea if that is a good or bad thing, I guess it depends on what it is making us feel, sadness, joy, fear, the reliving of trauma’s, it is not a wonder that people with dementia are often accused of having behaviour issues when in fact they are very likely reacting to feelings that have surfaced that maybe unknown to those around them, and perhaps the ability to manage those feelings in a way one would have before dementia progressed is no longer possible.

I am admittedly extremely emotional these days, the unexpected and recent loss of my sister, has brought many emotions, and I am acutely aware that some of those feelings that are surfacing have in fact been sitting quietly somewhere in the recess of my brain and it has taken her loss to have those feelings surface. One trigger can cause a tidal wave of things to come bubbling up, they may or may not be related, it just takes one event to be a trigger. I say this because after spending years working in Dementia Care, I see things am aware of things that perhaps I always was and thats why I advocated so much for the people in care, but I understand it even more and differently now. How many times were people triggered and behaviours erupted and one thing was blamed when in fact it likely was something completely different that wasn’t being recognized.

I am still able to recognize where I am emotionally and how to take steps to do my self care, I know not to rush myself, I know not to make any major decisions. I almost at times feel guilty amidst the devastating crisis of Canada Health Care System, that my team of doctors have been doing extra check in with me, even while I was away, on my return, appointments set in place, when I watch the system let so many down, I am grateful and truly blessed by the care they have given me, but I also wonder how long they will be able to continue to provide me with such exceptional care, given the crisis of our system.

We all need to be gravely concerned, I am waiting for the one politician who is willing to stand up and say this is not working and today we are going to start doing something differently. Dismantling and getting rid of all the bureaucracy, get rid of the levels and levels of management, get rid of the multiple processes of paperwork, that is unnecessary, when will we learn that we overcomplicate things, we are paying with the cost of human lives. I am waiting but because, government and businesses including health care, because it has become big business, everything is amount money and power, I don’t believe I will see it in my time I have left, I do believe that we are in for some very heart wrenching times. I don’t like any of the political parties, they are all invested with so much corruption. The political systems along with the medical systems all need to be dismantled. Maybe this is the time for more woman to be put into play, not that they are perfect, not that there isn’t some that are just as corrupt as the men, but they do come at things from a different place and perspective or at least some do.

I worry about how to go about advocating these days, how do we measure if anything we are doing is actually making a difference? Is it all falling on deaf ears? More and more we see and hear of different organizations that are being brought to task for practices that are not in line with what they were meant for and they are causing harm. Perhaps all the organizations need an overhaul too, for they to have become more about the business than actually helping those they proclaim to help.

So emotionally all these things are bubbling up, how and when to do what and ensure that whatever I do for as long as I can that I do it with a good heart and good intentions. I will be getting back to things as I can, I will take time as I need to for healing, for grieving, my heart and soul need the ocean, I will work towards making that happen, life is hard for everyone these days, extra kindness, extra self care. Baby steps.

This morning I was up at 4 am, its my sisters birthday, its only been two weeks since we lost her, I am allowing myself time to grieve the loss of her, she was my confidant, we talked every second day, we made plans for our yearly sister trips and sometimes when I went to visit at different times it would turn into mini vacations that were day trips filled with a lot of fun and laughter. It will be a huge void for me, my world has been shrinking in recent years, and the loss of her will be felt forever more. I believe we need to spend more time honouring someone in life and death, that we need to talk about it more, we need to get comfortable with those who are grieving so we can give them the opportunity to grieve in ways that are unique to them and the person they are grieving. To be able to just sit with them in it, without judging, without offering advice, without trying to fix it, just sitting with someone in their grief. Because we can’t fix it, we can’t make it easier or better. But we can help if we can learn to just let someone know that whatever it is in that moment that they need, that they feel, it is ok for them to be that and that we will just sit in it with them.

We all grieve differently, we shouldn’t try to impose what we believe is right or wrong for how someone grieves, instead we should honour them and whatever it is they need to do. Time is a great healer, but we tend to rush people, push them to get through the grief, the reality is there is no getting through it, there is only over time, learning to live within it. Each loss we face changes us, sometimes in very big ways, other times more subtly, but it changes us. Some pick up and move forward quicker, others stay in a sort of frozen state for a longer period, if we give our bodies, hearts and souls the time and space to move us to the new place were we are once again have days, sometimes weeks and longer without the grief overtaking us, then we heal in a way that is better for our bodies and minds. I am and will continue to do for me in whatever time frame I need, in that way I will honour my sister, I will honour our relationship, I will honour me.

Know onto the next thing, I living in Canada, am watching our health care system crumble, it has been eroding for years now, I worked in it and watched with each passing year it crumble a little more. It is costing people their very lives know. As someone who not only as Early Onset Dementia, but many other complex health issues, I have spent much time in the health care system. I consider myself one of the lucky ones who have a team of doctors that go above and beyond for me all the time, so much so that not only my GP but my specialists called me several times to check on me during the recent loss of my sister. I know how fortunate I am, and having spent a lot of time as a family member with someone in the system, as someone who also needs to access the system, watching and listening and seeing how very bad it is, I sit in disbelief that this is Canada. I look back and I look forward, and I wonder what it will take before someone in power will do the same.

In British Columbia where I life, we went to a centralized health care system, the province broke into regions, small hospitals shut down, or operating as basic care sites, food services, laundry services all stopped and shipped in from a central site. Top heavy management systems, layers and layers of managers, policy after policy, more and more paperwork, of wait where is the care… its at the bottom of the pile. It’s become big business, our health care, the human elements removed from the equations, just look at cost savings. Everything about $$$, but it has failed, it is and has failed on so many levels, and sometime we need to own up to the fact that in trying to make progress, we fail, sometimes it doesn’t work, sometimes we need to take a step back, rethink, redo, undo, and go again. Throwing more money at something is not always the answer, I don’t have all the answers, I don’t think any of us do, but perhaps going back to some things that worked well for more years than I have been alive is a good place to start, why well lets see : we have supply shortages, everything from parts to food, if we did things in house again, we could access and source more things locally, for example, I recently had to buy bags of ice for the patients at one of the small hospitals, they don’t have a working ice machine, someone else had to bring in crackers for patients to have with their soup, there was no ginger ale for the patients. Might seem like small things but they are important things for people who are sick and or recovering for illness. When things have to go to a centralized place for approval before anything can happen, when we clog up things with paperwork to order simple things to fixing things like ice machines, it is the patients who pay the price and it impacts their overall well being.

The issue is not because of the Pandemic, the issue has been eroding long before the Pandemic, but all the recent events from Wars to the Pandemic have brought things to light, they can no longer be covered up or hidden, staffing is only part of the problem, they just announced another 300 seats for training of respiratory therapists, paramedics, Lab techs. etc, that won’t even put a dent in what is needed.

We need to go back to having manager at each hospital, charge nurses, staffing done in house, bed people, who assigned and moved and transferred people between and within hospitals, we need laundry, food taken care of in house, not transported miles and miles, the cost of transporting, the lack of good, freshly prepared food is more important than having managers upon managers, having people at the bedside is more important than paperwork, these days people are so busy lots of mistakes are happening because people aren’t reading and looking at charts properly, yers ago the charge nurse made sure you new the important facts regarding a patient, less mistakes, RN’s taught the other nursing staff, nursing assistants ( care aids ), skills from wound care, to assessments of patients, to treatments, everyone worked as a full team, not everything was perfect, put it wasn’t all bad, if you needed something specific for a patient a call to the kitchen took care of it. So I don’t have all the answers, maybe I don’t have any, but I think sometimes we are so focused on progress and money, that we throw out the baby with the bath water so to speak. Maybe it’s time to take the good of what worked, get rid of all that isn’t, especially the huge amount managers, use those funds to put people to work on the floor, get teaching hospitals going again. Get taking care of people ahead of $$$, this is Canada, and what I have seen lately, makes me gravely concerned, for all those with complex health issues, for the elderly, who won’t complain, who may not have someone to be at the beside advocating for them, for the vulnerable like people with dementia who will go without adequate care. Its ok to try something, its also ok to say it doesn’t work, in this case it doesn’t work. Canada in Crisis.

I would like to thank all those who have emailed and sent messages to me on the loss of my sister.. I know many of you are wanting to know if I am Ok, I Am as ok as I can be ar the moment, . I am planning on starting back to things this week, not fully, but starting, I need some time , but the support is and has and will help get me through these days.

My sisters passing has effected me in ways I have no words for, I have lost my husband, my mother, many many friends. I understand grief, I understand that the grief you experience is greatly impacted by the relationship with the person, its why in one family every persons grief will be different, because their relationships with one another are so unique unto them.

I know it will come in waves, like the tides moving in and out, I know it will forever be there, that it will hit at unexpected moments, right now I am still numb.

Yesterday I reached for my phone to tell her I was home, because that was the first thing I always did, It brought tears, I know and feel within myself that I am needing to just let go and let it all out, and I will, , there have been tears, there are moments, but part of me is holding most of it in, in part because, I am almost afraid if I let go I won’t recover from it. I wonder in part if thats what happens when you have just had to much loss, if there becomes one that is the one that is just too much.

The loss of my sister, I am forever changed by it.

So thank you to all for your kindness and understanding, I appreciate you all very much.

I have received several messages with people wondering if I am OK, I want to say thank-you to all of you, your kindness has definitely, made this last stretch easier. I have not been reading for two reasons, one I am away from home and will be for the next undetermined amount of time. . , I am away for personal reasons, family reasons, but the particulars are not for me to tell or discuss, it is not my story to tell, so I won’t. Just know that I am ok, that due to being remote, wifi service is not reliable, but I will return to meetings, groups etc. as I can for the coming weeks.

This sudden and unexpected events, has brought to my attention just how very important the connections and friendships, and support from all those various groups and organizations are to my well being. Being without them the last few weeks have been challenging, but I am figuring ways to get busy while away from my home.

There is a lot happening in the advocacy/ activists dementia world, I do wonder how much is actually being heard given the state of the world these days. No matter how much will actually change during these challenging times the work must continue, the momentum for change must stay strong, we need to get more people engaged in working with the researchers, more people advocating, pushing for change. We must not and cannot let this slip and no matter how often we think we aren’t seeing change happen quick enough, each small little piece eventually adds up to big change. The biggest hurdle I see is that we need more people to step up, open up and be willing to help propel things forward. As we all know, this disease will progress at different rates for us all, so we need to be doing a continuous drive to encourage and mentor others, so that as many of us experience changes and may need to slow down or change how much we do there is plenty of others ready to step up. Advocating is not or in my opinion should not be about wanting to be the best known etc. it is about seeing change and making things better for all those who come after us. So it needs to be a selfless act of work. Doing it for recognition, or accolades, is the wrong reasons, if you receive those in and while doing your very best to make a difference that that is an honour not to be taken lightly or for granted or letting it go to your head.

i am while way working very hard not to let stress, override my well being, ensuring i am getting my walks and rest, having my little Phoebe with me is super important, for my well being and we are staying in an RV, so we have our own little space to retreat too. So really trying not to let my own wellness be impacted. My doctor is checking in on me, I was in the hospital just before this and he will be doing more with me on my return.

So I may not be writing as often at the moment getting to meetings and things are dependant on things that are changing day to day here, but I miss you all, please be well. Thank you for all your emails and messages.

Today I spent the day in the hospital, sent directly from the clinic, the ER expecting me, no waiting, ecg,s, blood work, imaging, and monitoring, Always the conversations around the complexity of my being. I must say that while they are having shortages, while you can feel the pressure cooker of the health care system, I was treated with kindness, caring, apologies for having to endure a system unable to provide adequate help, I did not feel that I received inadequate care. I felt as though everyone was doing all they could while taxed beyond measure.
I also had the opportunity to meet a nursing student, who in is final year, decided to take an opportunity to work for the summer, here learning the lab techs job, unfortunately for him, with my vascular system being what it is, given that there is a shortage of the small butterfly needles normally used to draw my blood, trying to find a vein was his first challenge, he called his senior person who was with him teaching for assistance, eventually after much coaxing a vein showed them where it was hiding, then trying to get it to give enough blood, anyways he was quite concerned, that he had caused me pain and distress, I reassured him he was just fine and thanked him for all he was doing to try to help . The challenge of getting things done with me stuck with him and later he came by to check on me as he went on break. We had a nice chat, he will do well as a nurse. so shortages are real, whether supplies or people, the shortages are very real. My doctors will decide next steps,. It hasn’t been easy accepting that issues that saw me in such bad condition last year are returning, but I am accepting of it, and remaining hopeful its a glitch. One thing I do know is that I try really hard to not end up in the hospital, but respecting doctors opinions, understanding they aren’t sending you there without great concern, I can’t expect them to give me the best of themselves if I am not willing to help them to that end, and I get the chance to keep going a wee bit longer. I feel changes, I adapt as I need too. I don’t take chances, when I need to I get the help and support from my doctors, taking chances, being stubborn, waiting to long, can cause me to hit a rapid decline, or causing much damage.

On the other side of thing, I will be doing a video recording, for my file and for my doctor who will have it so there can never be questions about my wishes. I want the maid program, I want everything put in place know so when the time comes, its easy. I know not everyone agrees with it, I don’t want to ever have to go into care, when I reach that stage, i want it to be the end. My choice, to go quietly, peacefully, better for me, better for the system, better for those that otherwise have to do all the work around keeping me in care, where I will be subjected to a life I have no interest in participating in. Dying with dignity is much more preferable. Its conversations I think and wish more people were comfortable with, death and dying, such a big part of life and living, yet one so many cower away from. So many people think well i know it will happen one day, and I have a will, and they think thats enough, but that is such a small part of it.
Its all the things that rattle around. I am resting, I am grateful,

I have been wanting to write but all my energy has been focused on fighting all the pain, and so many symptoms of which I have been free from since January. Which I have been grateful, oh so grateful for the last six months, after spending most of 2021 in bed, it was feeling good not to only have to fight the challenges and changes with the dementia, but fighting the pain caused by the thoracic issues, blood flow issues, lungs being impacted, blood flow, which means constant brain pain, coordination and vision impacted, and my angina on the rampage, along with all the fatigue.I was so hoping that when my system got the charge in January with unexpected results that it would be long lasting, but no one new for sure. Could this just be a glitch, could I get another up swing, I don’t know but the down turn is sorta hard to take. My brain malfunctioning more, is also causing havoc. But I am still smiling through the pain, laughing through all my fumbles and blunders. Like phoning someone today to apologizing for what I thought and was sure I had just hung up on her without saying goodbye or ending the conversation in any proper manner and I was feeling really bad about it only to find out I had not talked to her, and why would that become a very real thing, and a very upsetting thing, in the middle of the day. Well we know the answer, I know the answer, this is my dementia, this is my brain. These are the days you have to dig deep.

I have a lot of things sitting, emails half written, others unopened, only been able to manage two very small rides on my bike and walking is minimal, but I do what I can one minute and one day at a time. Its easy to get frustrated with myself , angry at myself, but this is all part of something that I do not have control over, I can only do the things I do to set myself up for success of living with the illness, and try to stay positive. Most importantly is to never stop being grateful, never stop finding joy in the moment and in the little things. So thats the update for now.

Yesterday I had the pleasure of being on a panel for the ICDW (International Consortium Dementia Wayfinding Summer Series, along with Drs. from Uk, Australia, US, and Canada along with fellow advocate and friend Debra Keay, from Ontario. It was an engaging, interesting two hours, the questions asked brought great things to the table.

Sitting in reflection two things really stood out to me, and I do believe they are connected. One of the things that came out and I have had discussions around this in recent weeks, is how do we the current day advocates encourage others living with dementia to get engaged and involved in research.

Firstly I think just like the stigma that surrounds Dementia, there is also a stigma around research, so many times I have heard, “I don’t want to get involved with people who just want to poke and prod me”. Somehow people equate research with being, injected, having to ingest, and be poked at. I guess that is an image we were fed, So many have not had the opportunity to see how much we can contribute to research in many different ways, how much it creates opportunities to meet others living with dementia, share, engage with the researchers, ( they are actually a lovable bunch, who truly do want to make things better for us). It helps me feel engaged, helps maintain my image of myself, helps maintain and build confidence in myself, feeling like I still have value and worth.

We as advocates need to put a focus on finding ways to get the message out to those living with Dementia. We are always asking researchers and others to help change the stigma around dementia but we also need to help change the stigma around research. We need each other, we need them doing the work they do so we can have better quality of life, they need us to do the important work for finding the things that will enable us to have that better quality of life, because without us they have no way to know and understand from our perspective’s what those things may be.

I am not looking for a cure, I am looking at all the things that can help me maintain a quality of life. They are helping me achieve that by engaging me in various ways on various projects.

We need to find ways to introduce others to the researchers and the researchers to those living with, only then can we get others living with dementia to lose the fear of becoming involved, and often the fear of their loved who also do not have a clear understanding of how much good can come for all by engaging.

I love the connections and friendships that have evolved through this work. I also believe if we truly want to do the best we can advocating then we need to be mentors and encourage others to shine, to contribute. Encouraging others making room for their voices to be heard is how the momentum grows.

Today I am in recovery mode, my brain is tired, lying low at home, enjoying the peacefulness of my little deck. I am thinking about all those in England at the Alzheimers Disease International Conference, wishing the event organizers and all those participating all much success. This is a time for them all to shine.

Time to close my eyes and have a nap as the leaves rustle in the light breeze.

Last night and the night before I had vivid dreams, in part in those dreams I watched myself write this blog , it was so vivid, on waking I wasn’t actually sure if somehow I had gotten up and actually wrote it, so had to check, but no I had only written it in my dream. So at 430 am I opened all my windows to hear the birds as they woke, made coffee and started to actually write this. By 6 am, my body was behaving strangely, I decided to lay down for a bit, but all day I have felt off, like my brain was turned off but my body was still moving along, a total disconnect. Not an out of body experience but an out of brain experience, that I truly have no idea how to explain it that it would or could make sense.

Any ways that isn’t what I started to write about but somehow where we ended up. What I was doing/ thinking in my sleep was about this week for me, tomorrow is my anniversary, June 7th, and even though I am a widow I still honour my anniversary.. My love for my husband has not lessened, I miss him, I miss his hand in mine, I miss our early morning coffees, and his kiss as he went out the door to work. I miss his presence, I miss that he was the one person who truly understood me, he choose to love me and he loved me completely. even though he has been gone a long time know, (2005), and that date comes at the end of the week June 12, and in between June 9th, is the day I lost my mom two years after my husband. She was and is my greatest inspiration. I loved her zest for life, I loved how she loved to laugh, I loved her gift of helping others. So maybe thats why my brain is disconnected today.

My thoughts around all this, is that still when someone loses someone we tell them, “time will heal”, it will get better and all kinds of other things. I guess on some level some of it may be true, but the reality is your heart breaks in ways that words don’t do justice, the fact is we learn to live with our broken hearts, we learn to rebuild and reinvent our life, nothing fills the gaps of the broken pieces. New things may come along and take up other space in our hearts and lives, they may be great, and we may be happy, but there will always be moments, or days, or something that will trigger, the memories, the missing of that missing person.

It feels good to carry that love with me, to honour and cherish them, I feel so full of gratitude that I got to share life with them. This isn’t a sad week for me, oh there always ends up being a tear or two, but more its a week full of emotions, memories a time to embrace all that was.

The saddest thing for me would or maybe will be if the time comes when I don’t have those memories, although I know I will still have the feelings of them, for now I will embrace this week.

Its funny every year I thought maybe this year it wont be this way at this time. Maybe this year I will just go through the week, without the dreams, the memories sneaking in, but I am actually glad when that doesn’t happen, I am happy to get another year to remember how good it felt to be so loved.

I am not sure any of this is what i started to write about at 430 this morning, but tonight at 830 thats where i am.