Sleep, or the lack of it plays a significant role in my day to day abilities and functioning, both cognitively and physically. For people with Dementia sleep issues, faulty internal clocks as I like to say, along with faulty wiring can make many days train wrecks. Todays train wreck came from not my own dementia or related health issues but from that of the “regular folk”, which by the way I wonder at times why so often we refer to people without dementia as regular folk. Who decides that any way, maybe we are the “ regular folk”, and they just haven’t realized it yet. Anyways back to today being a train wreck, it started last night, a big thunderstorm, lots of lightening and warm warm temperatures for evening, in fact at 12:30 this morning it was still 24 Celsius, or 75.2 Fahrenheit, much to warm for sleeping, even with my a/c unit and three fans running, my system can longer to heat. But again I’m off course, the temperature had little to do with today being a train wreck, rather it was goings on outside my building, which meant until the situation was resolved sleep was not to happen. So there is so many things that should and often are not considered for people with dementia, but making sure they are in an environment set for sleep, temperature, what’s right for them, do they have health related issues than when combined with some of these things like heat or perhaps cold, it can greatly impact their ability to function in a manner they would like to. Lack of sleep caused by outside elements such as noise, is also very much at play. Sleep is important for us all, it is vital for those of us living with dementia. Each day where my sleep is interrupted, this is why allowing people with dementia to wake and sleep at hours that their body/ brain wants and needs to is so important, but instead of creating environments that allow for that we drug people do they fit our schedules, so much unnecessary and harmful damage to people living with dementia especially in any care settings is being done.
I have had what I would call a pretty good day today regardless of being a train wreck, thoughts scattered, napping has been beneficial, and it will be early to bed for me today, which seems funny considering I am usually in bed by 6 pm, so today it could be as early as when I finish writing this.
I am hoping tonight the world goes quiet, so that sleep can come a little easier and although sleep is always fragmented it seems, and I am exhausted most of the time, it is more manageable when the outside elements don’t create further havoc.
Today I am highlighting this topic and worthwhile listen, a big thank you to Celia Foster for sharing this. Oddly enough yesterday the conversation around isolation came to the forefront and admittedly I have been and am far too isolated and had to admit and give much thought to that yesterday and last night.
It’s difficult to find an answer, especially if you also have to manage changing health conditions. About six months ago we received a letter from the government that we are no longer allowed to work or volunteer for more than 15 hours and or four consecutive months without losing our disability income, which is barely enough to live on at best. I don’t believe those in places making ridiculous policies has given any foresight into the fact that allowing someone with a disability to work as much and to what degree as they are able, not only allows them to afford to live a healthier life style, by providing extra income for better food and staples, it also saves money on the whole system, less mental health issues, less overall health challenges keeping people active and socialized is proven to have many benefits, those benefits far outweigh any negatives anyone has yet to be able to highlight for me. Many people with various disabilities have so much value they are able to contribute to their communities and to help themselves, again the more they can help themselves the less they have to rely on and take from the system. At a time when there is a shortage of workers, helping business and companies employ seniors and people with disabilities is a great way to lessen the burden on our over stressed housing and health care systems. Penalizing them, not allowing them to earn income or volunteer without fear makes sense. Yet it seems as though the people in positions of creating policies have to check in common sense and understanding at the door before they start their positions. Surely somewhere in amongst all these highly educated people someone most have enough common sense to see that they are creating these crisis with all the ridiculous policies. Most that I know want to be productive and busy to whatever degree they can to ensure their well being. It’s like living imprisoned without the walls.
I am glad to see the recognition of the need for people to be socializing but then we need the policy makers to not hinder us from doing the things that are of benefit not only to ourselves but to our communities.
I am and will continue to try to figure out how to decrease the amount of time I spend isolated, there isn’t easy answers it seems. I will continue to advocate to make changes within our very broken system, I will use my voice until I no longer have one, or until they find a way to silence that as well.
There is little to no resources for me, in addition to the fact that I must do things at times of day that are best for me and not only cognitively but know also physically. Too much stimulation with my dementia is not good, balancing the noise of the world with trying to be engaged a juggling act, limiting the number of hours and size of events as well.
For so so many living with Dementia it seems as though we are always waiting, waiting for the fog to lift, waiting for the most recent health event, to settle out, waiting to adapt and adjust to yet another new “normal”. It’s like playing pinball, ( I wonder does anyone remember those pinball machines?) you pull the leaver the ball starts bouncing here there everywhere, if you don’t use the flappers just right game over. Dementia is sorta like that, people see the outside everything looks fine but on the inside, things are lighting up, one event triggers other things to act up, inflammation causes, blood flow issues, causes organ issues from the heart through to the liver, eyesight, balance coordination issues, all the while you look just fine, but internally a full scale pinball game is going on.
Which brings me to my next bit, I am not sure if you all have what we call “ The Most” medical paper here, you end up with your preference of the most choices for your level of care, it is listed on your medical information so if you end up hospitalized it’s what they go by. Even with health care directives, which I have a very clear, concise one, my doctor has it, I also have a DNR, but in the event something happens in the middle of the night, while I’m in a different town, no one has access to that unless it’s on my person, let’s face it we don’t strap those things too us as we go about our day. Below is an overview of what the most system is and what each level means for you. We are updating mine after lengthy meeting with my doctor yesterday, it’s time to bring mine to the next level, reviews of these things are so often put off, yet everyone should have them, everyone should do them, not just if you have a terminal illness, these are things that should be talked about and done and reviewed, just like we renew insurance plans, we review our housing needs, yet our health care reviews are so often left for another day. Leaving these things to another day, because we think we have time, we don’t, whether we have health issues or not, life is fleeting, it is not guaranteed, it is not promised. For those of us living with any type of terminal or progressive illness, we know full well the clock is running, time is winding down. Maybe we should all be living as though today is the last, maybe it would afford us all to be more forgiving, compassionate and understanding.
I also have the package shown below which sits in plain site for paramedics, it’s another step to ensure my care is what I want. I can see people cringe, I can hear the I don’t want to have to see that everyday, but the truth is mine sits there has for years now, I don’t even notice it anymore, it has made a number of trips to the hospital, but it has also been missed a couple times, so doing my MOST, ensures things will happen my way for me.
My good friend Janet and I were talking about this very thing, after I had spend a long appointment with my doctor yesterday. My system is struggling, yup look fine on the outside, tired but fine, you know the fine that brings people to say “ you don’t look like you have dementia”, that kind of fine….but I am not my vascular disease is progressively worsening, yup invisible to all, but playing havoc inside, effecting everything, yup no cure, no treatment, I will be like most others with dementia, I will die of events other than the dementia itself. I know, I know, most don’t want to talk about it, read about or even think about it, but sometimes we need to think about the hard things, if these types of things became part of learning, understanding growing up we could safe much stress for those we leave behind. Death is an eventual given, how much time, when is the right time, know is always the right time, we can put off many things in life this is not one of the things that we should think “I’ll get to it”, put it at the top of your priority list, then relax, if you have just given all those who care about you a gift, that hopefully they never have to realize for many years. For people like myself, who live alone, who is aware that I will be left at the mercy of the system, it is even more imperative that I have done all I can, to ensure I don’t end up not being able to speak for myself, and at the mercy of the system, ending up being kept alive with zero quality of life. I don’t care what happens to any of my things, but I do care what happens to me. So if you look at the chart, there is two areas circled the lower is sort of the standard that most have, however, I am a M3, the other circled area. There is also explicit to that, orders on the form signed by both my doctor and myself. I can rest easy knowing, that when my system goes into crisis, what will happen, and that if and whoever may be still here, it will be a simple phone call from my doctor that I am gone. I know I have talked to this subject maybe a little lighter in previous blogs, this one more blunt, due to my ever progressing complicated health challenges. My doctor told me he felt I was being wise. Most don’t understand that health care directives are great, but they are not accessible at the hospital, so until someone can bring it in or has authority to speak for you, you could end up having things done you don’t want.
No I do not have a death wish, I am not even close to being done or accomplishing what I want to, but I ultimately don’t get to decide when my time is up, but in the meantime, I can focus on doing all I can to live as fully as I can, to do all I can to minimize the effects of my dementia, all the rest is taken care of. I am grateful that I have a team of doctors who work so hard, during a time when our medical system is in crisis, too ensure I have the best quality of life for as long as possible and that they will ensure the end is also as best it can be. I have much to be grateful for. I hope this blog is not upsetting, but instead prompts you all to give deep thoughts to what it is you truly want should something happen, to encourage you to have the conversations with your doctors, make sure it is clear on how things work where you live, get things in place with them, get them to help you have conversations with your loved ones if you are not able to do it on your own.
Thank you to my friend Julie Hayden for the above piece by the ever lovely Gail Gregory. Both are great advocates and do so much for bringing awareness.
This should be the basis for a campaign on dementia, it highlights so many of the very valid things that so many advocates have been trying to get the broader community to understand about dementia rather than fear it.
YouQuest Calgary is also showcasing how valuable the connections of bringing people with dementia is and how much their quality of life is improved by allowing them and giving them the opportunities to try new things, learn new things, be out and about having fun in a safe environment. Quality of life is so important no matter what you may or may not be afflicted with, people with dementia have been sidelined, sidestepped, ignored and locked away for too long, creating symptoms of the illness to worsen. This has allowed the fear and stigma remain. 30 years of advocating as seen only small measurable change. But we all keep trying, persistence will prevail, the numbers of people and ages of people being diagnosed keeps increasing and so eventually it will force changes and viewpoints. The advocates who were trailblazers who we all still look to for inspiration, who gave so much of themselves we will forever be grateful to, and to honour them is to carry on the work they started.
Sitting at a time when much is wrong in the world, where supply issues, housing issues, addiction, homelessness, health care systems collapsing, one wonders if the realm of needs, the voices of those living with dementia will be drowned out. It is a valid and real concern for many. Will we receive the care we need, will there be effort put into the rehabilitation resources that we need, will our lives matter? As much as I have no answers to these very real concerns, the one thing I do now is that we must not stop we must not give up, we must raise our collective voices to a new level.
So a big shout out to all who are continuing to keep using their voices for the betterment of all, and to all the organizations and groups who are truly making a difference to those living with dementia in real time in real ways.
Below you will find a piece from the Ravenwolfs Collection, and a link to find more: I follow and read a lot from her collection as so much of it feels like me. This piece definitely describes where I sit these days.
She’s the strongest person everyone knows, A beautiful soul who always seems to be smiling and laughing.. But they know what she wants them to know, they see what she wants them to see. She accepts and loves people for who they are, without judgement or expectation. Her battles are the quiet ones no one knows about, behind closed doors and silent tears. She cries from inexplicable sadness, momentary angst and absolute weariness. Not the sort of tired that sleep can satisfy, but the deeper kind- a soulful fatigue that needs much more than rest. She seeks no pity from those in her life, for she is the strong one.. Because sometimes, being strong is her only choice. She loves with all her heart, lives every day to its fullest and gives everything her all. She’s learned to temper her expectations and depend on herself. Strong willed, sassy and feisty, she’s the woman that people never forget..and she makes sure her voice is heard. Not just to talk, but because her words have meaning and her thoughts matter. She’s not a candle in the wind, she’s a roaring wildfire. It doesn’t mean she doesn’t fight her internal battles of insecurities, fears and worry, only that she knows her strength and never gives up. She’s not a fighter because she always wins, but because she never stays down. She’s okay with being a beautiful mess and a wonderful disaster, Because she’s not defined by all the things others focus on-flaws and imperfections. She knows who she is, what she wants and she won’t stop until she’s happy. She’s the strongest of women, but not in the way that people think- She’s tough in heart and hardy of soul. She loves when she shouldn’t, more than they’ll ever love her back.. And yet, she still keeps pouring out her heart. That’s the beauty and blessing of a strong and soulful woman. |ravenwolf
So today as I ready myself for a long Doctors appointment, I am for her a beautiful mess these days, but I am here, somedays better than others, life has changed me yet again, life changes happening again, ebb and flow, but still doing the best I can at each moment in each day. perhaps that is enough, perhaps that should always be enough, because if we allow ourselves to feel, to laugh to cry, then we are living, and that is enough.
I am sitting outside this morning at our medical lab waiting in line to have tests done this a.m., after visits with my doctor yesterday. He wants them done right away, and apologizing to me for what it entails now to access and get any tests done, a true sign of our failing health care system. The pressure on the whole system is palpable. My doctor will track me down before the weekend and then I will also see him for a double time appointment Monday, with the following week being a day with my specialist at the hospital for a series of heart tests, it’s working too hard again.
This brings me to the point of the title of this blog. Dementia in and of itself is a difficult and challenging illness to live with and navigate, so many different types, so many variations of symptoms. Yet still after so many years the focus is always about memory loss. Memory loss for sure can play havoc, it usually sees a progression as time ticks on. However it is the many other aspects that are the more difficult to live with, navigate and understand and even more do to get others to understand.
A good example is my own dementia, vascular dementia, early onset set vascular dementia. The biggest piece of my dementia is not my dementia but the vascular component which effects my dementia. Blood flow issues, TIA’s, my whole vascular system rains havoc, impacts all my major organs, my heart is and has been taken a big hit. Why is this important, because all of these things combined effect my dementia, it’s different each day, sometimes I get a really good stretch where I can almost snd I say that in a light heart manner, convince myself that maybe I don’t have dementia…. Hahaha, but then there it is, forgotten words, names, places. The forgotten medications, meals, where I am going or why. I have become good if not great at using alternate words or phrases or sentences when word finding is difficult, most would not even be aware that I am doing it. Actually many with dementia are good at make things work, it means less stress on ourselves, better quality of life for ourselves.
My vascular and other complex health challenges and by the way did those cause the dementia or the dementia play a role in them? Does any of it really matter?
What really matter is that people start to understand that every person with dementia needs to be treated individually, because everyone of us comes with our own complex issues that require different elements of care, understanding . It requires people from Doctors to health care professionals to the general public to be open to learning each individuals needs and be willing to learn from the person with the lived experience. Too have an understanding or at least the willingness to learn about the people living with dementia who are in their care, or in their circle. I am blessed with a great team in a failing system, I am grateful for their willingness to listen, to help me continue to have the best quality of life as possible.
They are also helping me through a difficult time that leaves me physically, mentally and emotionally fatigued and fragile, all of which impact all aspects of my health, including my dementia.
So speak about your good days and bad days, don’t be afraid to tell your story, it’s all part of helping others gain a better understanding.
Seems like a silly question right?, yet over and over we hear from people living with dementia how family and friends disappear from their lives. Often we hear it said followed by, “ but I understand”, and “it’s Ok, I get it”. We accept their departures from our lives, like we expect it, and for many it does become the expected and somehow expected outcome after a diagnosis. Sometimes people stick by for a time, sometimes others step in and step up to fill the void, to ensure connection and the importance of not becoming to isolated doesn’t happen. Often we don’t know, understand and can’t no matter how hard we try understand the departures. People are hurt by these departures, but rarely do or say little except that they understand, and that it’s ok. I have learnt though that people come and go, but we shouldn’t chase after them, leave room for them to come back into life it lets itself to that, if not be thankful for the time and enjoyment you had, cherish those and open yourself to let new people in, you may enjoy some wonderful new relationships that will go the test of time. This holds true if you have dementia or not. I have been fortunate that through my work and affiliation with Dementia Alliance International, and with various research groups like the CCNA ( Canadian Consortium Neurodegeneration in Aging, AgeWell, and others have gifted me with friends around the globe, and providing opportunities to meet in person with many helps keep me connected, even though for the most part still isolated. Without having the opportunities to work within these and meet others, I would struggle to have purpose or hope at this time. They are a life line. They have been, kind, caring, respectful, as I am navigating the loss of my sister, which has taken the wind out of me, but their willingness to be there in any way they can, the willingness to give me time and space, yet ensuring they are there if need be, speaks volumes to the depth and importance and strength of those relationships. I am grateful for all of them.
Back to the title of this blog, I sat here with an address book and pen and paper, the loss of my sister has me reading in many ways, thinking about all the losses, I was soon to discover, that I now have more people on the other side, than I do in the here and now. I have no idea if it matters, except to me. I am ungrounded at the moment, I feel like I’m holding my breath, gasping for air. I will get there, I will be gentle with myself and I will get there.
There is many things of concern in the dementia world, how and why many organizations collect huge $$$ every year, but very little ever actually makes it to being used in ways that has a positive impact for those living with dementia, it’s like 30 years of advocacy has fallen on deaf ears. I believe we have to fight to have a measurable way to see how they are doing and everything they do should have to be reviewed by an independent group of people living with. They should also be required to set aside a certain amount to fund bringing people with lived experience together. I believe more input from those with lived experience to make sure grants are going out and do and for things that will actually be good and have a positive effect on those with lived experience. I believe it’s time we hold them accountable. Everyday there is reports of funds being misused throughout many organizations ,it is time to make them and their people accountable, they are collecting money on the assumption it is going to help people with lived experience… its time.
I have mixed up days, dates, my medications and appointments in fact today I thought it was Sunday, wrong, it’s Monday evening, pills missed, others taken to often, nitro patches forgotten to put on, other times forgotten to take off, the other day I discovered I had three on. Oh well, I will get on track, some days are better than others. Life is and can be hard and down right cruel, but it can also be beautiful. The sadness will come and go and I am pointing myself in the direction of finding my joy again, finding my peace, finding the beauty.
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.