I was reminded yesterday during a conversation that sometimes we are fighting so hard for each good day or moment, that we are always looking for the silver linings, looking for the things we have to be grateful for. Yet somehow in all of that the one thing that I have forgotten to acknowledge and give thanks for is my body.
Yes, this broken, often unwell piece of equipment, and I, like I am sure many others when giving thanks for things forget to give thanks to our bodies. For all that it manages, if we think about it, I may not be able to multi-task any longer, I may struggle with a lot of day to day things, but if I stop and look at how much my body has to multi-task still even though it’s broken and hurting, not only from the Dementia but all the other things many of us with dementia have that complicate things even more, like cerebral vascular disease, hypertension, a rare type of angina, and on and on it goes.
Amidst all of this, while struggling with the Dementia that is forging in my brain, the magnificent brain is still multitasking every single day, keeping all those parts running, and maybe they don’t run perfectly anymore but none the less it runs. It runs well enough that I can still sit here and write, it runs well enough that I somehow make it to meetings and give speeches, well enough that I managed to write a book.
Perhaps I miss appointments or get the days and times wrong, perhaps, I make more mistakes, perhaps I can no longer multi-task, but while I am not my body is. I have ( or my brain has) given me the tools to adapt and adjust my life to keep running, maybe not in the fashion it once did, but I am still here and I am still standing.
So should we not take the time when we are thinking of all the things to be grateful for when we are giving thanks for so many things, should we not be including thanks to our bodies. For it is in fact the very piece of us that is broken, our brain, our bodies, that somehow are still doing all the work, to allow us to still be here.
So today after a very short one day reprieve from pain as I am sitting waiting for my doctor’s appointment today, after another sleepless, exhausting night, trying to manage the pain, I will be saying a thank you to this body for allowing me another day. Another day that I can write, spread kindness, share joy, enjoy friends and family, yes today exhausted or not I am here because my body is deciding to keep running, maybe not on all cylinders but it’s running, and that’s a lot to be grateful for.
It’s been a bit since I’ve written, but I’ve had to give myself permission to scale back, to think differently than I normally do. It’s hard when we have conditioned ourselves to expect so much from ourselves, we can’t blame anyone else, we can’t blame society, we have taken it on. We have placed huge expectations on ourselves to complete everything we’ve felt necessary to do and attend. We would never put those expectations on anyone else yet we do it to ourselves.
Why I wonder do we tell others to take it easy, to look after themselves take all the time they need and then in the same breath berate ourselves for not managing to do it all or more.
We are driven, we are passionate, we want to feel like we are contributing to our lives to the lives of others to things that matter to us. Many of us with dementia often talk about how tired we are, but we keep pushing to show up, to support the others we care about, to help drive change that is long overdue, we sacrifice ourselves, our own well being, because we take our commitments serious, maybe because we are working so hard to get others to hear us and take us serious.
Often groups and organizations that are working to make things better for those with dementia, to include us, ( some use us), who talk about ensuring that changes happen to make things more dementia friendly, when in fact those very same organizations ask us to attend and participate expecting us to be up at unrealistic hours middle of the night, to make presentations, to participate in discussions, because they base the hours for themselves that work for them, ( they are paid ), they only participate during their working hours. But we who live with dementia and who we know how vital rest is to our rest is, to our cognitive well being, are asked to give of ourselves freely, to put our already challenged well being at further risk, by attending at unreasonable hours.
For use feel like we have no choice, if we want to be heard if we want to help make changes that actually impact us directly we have to be willing to be the sacrificial lamb so to speak. The one thing we must do then is give ourselves permission to ease up when and where we can. It’s hard not to keep high expectations on ourselves. I have learnt in this past year to do a one thing a day rule. This has come about because in the past year I’ve only actually had about two months where I have felt good. My health has been significantly challenged and continues to be today, many with dementia have many other health factors that come into play, does the dementia make them worse, or do they make the dementia worse, I am never sure and bounce back and forth on that. I do know though that my ability to keep my health stable becomes more difficult each passing day. so I have taught myself to be happy to make it and attend one meeting, or do one thing like clean put my spice cupboard, one thing a day, somedays I can’t manage that, but if I miss a meeting, if I miss a support group, I no longer berate myself, make myself feel worse. I remind myself that I do live with a terminal illness, that today I’ve done pretty well. Today I’m still here, I’m still smiling, I’m living only for today, and that’s enough. It’s important and maybe more so right know with everyone dealing with this underlying stress of living during this pandemic that we remind each other it’s ok to say not today, it’s ok to not put that extra pressure on ourselves. Give yourself permission and give those around you permission and encouragement to take care of self. That is truly how we will make it through these very turbulent times, and maybe just maybe on the other side of it, we will see the change we all know is long overdue. Maybe the silver lining is that through it all we continue to learn and grow, despite living with what is still previewed to be the worst possible illness to end up with, yes maybe the silver lining is that we indeed are living each moment much more than we are dying. Maybe the world could all learn if they did like us and lived like they were dying.
I know and my doctor knows, those who are close to me know, that since this time last year and particularly since March, my health has been taking a hit, one thing after another, complex, and complicated, and since the end of September more challenges, so here I am 20 days later still fighting. The fatigue it brings is hard to describe. This time it’s an infection that doesn’t want to let go, it’s painful, and I just learned that it is the most common infection for people with dementia? Yup I’m learning, every day I live with this illness I learn. I’m am showing this picture of what it looks like with Dementia and illness combined, it’s not pretty, but so often the only time anyone sees us is when we’ve spend hours making ourselves at least presentable enough to manage a meeting or do what we are required. the reality is the takes a great deal of effort on our parts and a great deal of pushing ourselves. We push past the pain, past the exhaustion and all the normal struggles we face with our dementia. I’ve always said I didn’t want to make it look like life living with dementia was easy, and that I would never sugar coat the reality, so this is the reality. There is no sparkle in my eyes, there is tired, there is pain, there is a body stressed. I am not stressed, my body is stressed, trying to fight off all the other complications plus deal with the effects of the dementia, it’s a lot for any ones body to do. Compare the picture on the left with the picture on the right when my body is managing it all better, its shocking really even to me.
I’m always learning because I’m always trying to help myself, it’s not always easy, many times I’ve crumbled to the floor in tears, wishing I had a partner who could get me a tea, or and ice pack, or make me sandwich, sometimes it feels too hard, but I push myself, I push hard.
Monday I am going to start an Osteo exercise program, it will be twice a week, it was designed by an Occupational and a Physiotherapist, it’s designed for people with Dementia and has never been offered here before, but I need to regain strength. I am also going to be going to a pole walking sessions, also for people with dementia, The goal with it is to help with balance and coordination. I am thrilled these programs are being offered, I’m not sure whether they will be sustainable beyond the nine week session as the cost comes into play, These are the very types of programs that should be part of the overall program for people with dementia.
These are the things we advocate for, I’m not sure how or why we have to, if we are kept moving, kept agile, we would sustain less falls, require less hospital stays, maintain our independence for longer, all of which in fact saves the system money, so why are they not part of the plan for people with dementia. Easy answer, there is no plan, with other illness, they help build a plan to help you to recover and live as best you can, with dementia there is simply nothing.
So I will continue to push myself, I will continue to strive to maintain my health as best I can, my doctor says the reality is I’m in year 6 of a 3/8 year diagnosis, that my body is having a harder and harder time fighting all time.
To date there is much talk about what can be done for all living with Dementia with very little tangible things actually happening. After 30 years I think it’s past time that all this changes. Until then I will be trying to regain my strength, so that I can continue to advocate for the very things that are so lacking for all of us.
There has been a lot of talk about technology, it’s use and moving it forward in many different applications to assist those living with Dementia.
I have long said there is good and bad to technology, and after hearing so much talk and opinions about the film “ The Social Dilemma”, I sat down and watched it, I thought about it, I watched it again, thought about it some more. I have always said technology could be either used for good or bad, I believe in many ways it has been used in ways that are not good for people. Creating addictive behaviour, changing behaviours, using manipulation techniques is wrong always. For those responsible for much of this know stepping out and speaking about tells me that some of those have a conscience, it tells me that they know we are at a tipping point and we the general public need to direct whether technology will be used for good or bad.
Technology can bring so much to people lives, we have witnessed it during this pandemic, allowing people to stay connected, allowing business to carry on via using on line platforms like zoom and others. So much good there. On the other side of the spectrum, fear monger in by news media. There needs to be a balance, too much use of social media, can decrease a persons senses about how what they are saying and doing can do much harm to others. Additionally young people are particularly vulnerable, children are trusting, it can end in very bad ways when those who prefer to use good for evil come into play. Perhaps we need to rethink what age children are being given such freedom with technology. They can pick it up quickly, have the ability to figure out it’s uses faster than most adults, but often are not emotionally or cognitively able to decipher danger. In fact many adults fall prey to those using technology for evil. What’s the answer, I think we all need to stop buying into and clicking on things that aren’t truly relevant to us, start using social media to put positive out into the world, in a sense hijack 5he very platforms that have tried to hijack how we think, how we act and react, what we watch. Time to turn the tables, instead of the machines feeding us we need to feed the machines. Take back control. When we stop looking at and reading the fear mongering stories, when we chose to see good, do good, evil can’t win. I believe the people who build these platforms did it mostly thinking about the good, without putting thought into what could happen when money and greed turned the tables and started using them to take advantage of people. much of what was said in the Social Dilemma, is scary in and of itself because the big question is do believe have enough will to take back control.
I believe technology does and can have its place, but it must never be allowed to take the place of human contact, communication with each other. There is many things we as people must wrestle with and decide how we move forward into the future, I believe covid 19 is bringing many of them to light.
I haven’t written for a number of days, many things rolling or rattling some might say, around in this brain of mine. Which seems ironic in itself considering I have Dementia, I may have had to check numerous times today on what day of the week it is, at this moment I’m still not sure. But it doesn’t matter, I may mix up dates, days and time, but it doens’t mean I’m not capable of some very deep thoughts on many things, and I actually view things from a different prospective than most. My thoughts will not and often do not align with many others but they are mine and I stand by them.
This last few weeks have once again found me struggling with health issues, I have actually never rebounded to where I was last fall or even this spring, and I am finding myself and my ability to fight anything that hits me more and more difficult.
In conversation today, my doctor said that even this ( I have an infection or celllutitis), in my arm, it is bad), I have been spending 3 to 4 hours a day at the hospital getting my IV therapy, I can now how have treatment orally and at home, unless it becomes worse again. I’m so exhausted, some days I am sleeping 14 hours. I get up to attend to my dog, tackle one small thing each day, and believe me those small things feel like presty major accomplishments at this point. My Doctor says it will be weeks still before I’m clear of this, Ugh, truly, I have things I want to do.
But as the doctor very gently told me today, when something hits my body, it sends my whole system crashing and struggling, when others would have their bodies kick into high gear to help fight whatever is happening my simply cannot. We also had to think about the fact that I have done extremely well until this last year, but the reality is I am in year six of a three to 8-year span. The next thing is he has decided at that I need a flu shot this year, first time in five years he has felt that way, he wants to administer it himself so will do that on Saturday. I know my system is weakened, I will be going to a nationalist now, to help balance a kidney /brain program, my kidneys are no longer working that well, the foods I need for my brain are not great for my kidneys, they will help navigate a balance. Whoever thought avocados could do harm.
It is absolutely exhausting trying to keep moving forward, some days, it seems like a futile task, especially when I am already not feeling well. But I try to focus on the things that bring value and meaning to my life, I still show up, every day I show up putting whatever value I can into my life, into meetings and organizations to hopefully try to help make changes happen. And the real silver lining is those friends who allow me to stumble along but also have the wisdom to just show up and be there, with a hug, a dinner, whatever they think I may need. I am eternally grateful for those very respectful gestures, kindness matters.
Next thing rattling around is something I really paid attention to while in the hospital every day recently, and I apologize to my female nursing friends, because I know some of you may be offended and I mean no disrespect and I have alot of respect of some of the nurses. But one thing was so glaringly obvious to me that I then had to spend much time thinking about and pondering the why’s of this. Why are female nurses acting and behaving like they no longer have the capacity to be kind and caring and compassionate. Why are they sitting at the desk, ( at one point we sat for two hours without so much as being given even a look of compassion, listening to nurses sitting at the desk discussing how awful thier schedules are, how horrible of a health Authority they work for, how they don’t get another weekend off for 6 weeks, and on and on it went, they were feeding on each other, and there we sat, sick, stressed, some filled with anxiety and thats what we got.
Now I am the first one to say there needs to be a better life balance for people working in health care, they need more time off, and the list goes on, but sitting at the desk, making each other feel worse, does nothing for each other nor does it help the patients who are already stressed, it leaves them to sit and wonder if they dare ask for help, or if they’re that unhappy how are they going to be able to look after me. It adds stress to already stressed people. So nowhere in all that time did one of them leave the desk to see if anyone needed a blanket, needed water, just needed to be told, we haven’t forgotten you, we will get to you as soon as we can, instead, they sat on their stoops, bitching and complaining. While we sat like slabs of meat waiting to go to slaughter. Oh did I say I finally, in excruciating pain, arm on fire with infection, in tears, finally made my way ( only a few feet) to where the nurses were sitting, and said I couldn’t sit without getting something for my arm, so I had to leave to find ice or something, barely looking up one said, well I could have given you some, I responded but you didn’t, she shrugged her shoulders as I left, totally uncaring about the situation any of us where in because she was to busy feeling bad about her unfortunate choice of careers? I left coming back hours later when there had been a shift change, and I had gotten ice on my on firearm and spent another 5 hours waiting to be tended to, this time the difference was a lovely lady, whom I have the pleasure of being able to call a friend was working and so I was given icepacks so that I could withstand the pain until a doctor came. Now if the hospital was busy and overrun its one thing, but they actually closed part of the ER down, because it was so quiet and they didn’t need it in use for the day, not as many people are going to the hospital since Covid, and trust me, I wouldn’t if it wasn’t necessary.
The next few days were not much better, but I endured and tried to be as nice as possible, sometimes hard for me, as these days I usually say what’s on my mind, but then the next couple of days I had male nurses, who were not sitting behind the desk complaining they were talking to us, the patients, they were busy stocking up supplies and generally working and checking on their patients. In fact, because I have very tiny and twisted veins, difficult to get a needle into, the difference was shocking on how that was handled, the male nurse when he first came in says I saw in your chart you have veins that like to misbehave, I chuckle say yes sorry about that, he says never be sorry, it’s my job to look after you, we discuss the issues they usually have finding my veins, all the while hoping that the line that’s in will hold. Go back a few days, when I tried to explain they needed to warm my arm, use the light to find a vein, I got told “I know how to get a line in” this was a nurse and her ego, because I was never questioning her skill, only trying to ensure it easier for her and definitely easier for me, after three murderous attempts to get a line in she threw her arms in the air and said I’m done and walked away. Wonder how much she thought that helped me. the next nurse used the tools I have been told to mention to them, by many nurses before them, she got the line in, it did however have to go in the infected arm because they could find no veins on the other, where the tree murderous attempts were made. Know all this is happening while I am in extreme pain, sitting in a waiting area, because they have not even bothered to put me into one of the many empty rooms that are for ER patients. Yes, these types of things can make a difference in how someone responds and manages through an illness. Anyways back on track, my vein blew, the male nurse had me laying down with a warm blanket, he pulled up a chair, said we will just chat for a bit till I convince one of those veins to play nice, and that’s just what we did, we chatted while he rolled veins around until one decided to play nice, the needle went in with no issues, and he said see sometimes you just have to have patience, Wow, Wow, so why did he have time, why did he have compassion, why was he able to make all the patients feel like they mattered, another 3 hours and another change in veins, I was on my way. Feeling like I had actually been cared for, I told him I’d like to clone him. Know this is not the first hospital stint for me and not my first overview of this, I’ve witnessed and experienced it before on many occasions, my question is what is the difference?
Is it how they view their jobs, they are there to do a job, so they do the job, not once was their conversation about job quality or lack of, or rotations or days off, there was the odd question of did youget to enjoy Turkey dinner, but that was while busy doing other stuff. They were at the desk long enough to chart something, get something, and otherwise they were actively engaged in patient care.
I know there is many amazing female nurses out their, and my heart goes out to all who work in health care, but there is a difference and perhaps we as females have something to learn from our male counterparts, and perhaps its as simple as ensuring there is a balance of male/female ratio in the work places, because maybe then we will bring out the best in all.
I’m grateful I got looked after, I am hopeful that I won’t need to go back on IV therapy.
I’m hopefull that maybe once this pandemic comes to a close, we will have learnt and solved so many of the issues in health care systems, but until then we all need to ask if we are part of the problem or the solution. We all have a roll to play.
Finally the last bit of rambling tonight, Sometimes I wonder especially when I’m so sick I can barely be up for five hours, why I push so hard, why be up at four in the morning to sit as a panelist on a global webinar, why get up to attend a meeting, then fall back into bed with exhaustion so you can make it to the next. Why not just give up on it all.
Because it is in those moments when you aren’t sure if you’ll be able to give the talk, if you’ll be able to sit at the meeting, its in those moments you remember why you are there. You remember that it matters that you show up, you remember that for all the Brians, and Jakes and many others out there it matters, for all those I have met through this journey it matters, for the friendships with people across this country and around the globe who have become my family and friends my fellow warriors it matters, for all those who have lost their voice it matters and if I lose mine trying to get change done then I will have won in the war on dementia.
How do we ensure tangible change? Why don’t we see actual change at the rate we want? Well perhaps we need to understand that any change is a win, it moves us in the right direction. The problem is we ( people living with dementia ), don’t have time, the clock is running for us. So although we should be happy to see that there is at least some form of change, here we are waiting.
One of the things I see as the biggest problems are policies, regulations, and government red tape hinder us from doing things in a manner that are proactive and person-centered but instead are money pits that they keep throwing more and more money at studying, trying to reinvent a wheel that has never worked. hiring more managers, doing more reviews.
What we need to start fresh with fresh ideas, people need to get thier egos out of the way so that real changes can happen. And they can happen quickly, and easily and if we allow these things to happen, we not only will fix the problems found in Long Term Care we will fix the problems facing the industry, with burnt out workers, and people no longer wanting to work in the profession. All of these things would require a committment of resources to get up and running, but would safe money in the long run.
We only have to look to the Netherlands and Scandanavia to see how much better people do living in small scale homes. Living in community type homes/ farms. These types of homes enable instead of disable. And for those that believe the bottom line is about $$$ vs. Being about Humane, you need to take a better look, these small homes will safe $$$ on many different fronts, and imagine it can even allow for a persons dignity, respect to remain to the end of life. After being at a TREC webinar yesterday looking at the “ farm homes” vs care “home homes”, I cried, literally cried, as a person living with dementia who has been saying for years we need these small homes, that are actually “homes”, not institutional settings that they try to make look like homes, actual homes where people participate to whatever level they can, in real life time in real life activities things they would have always done. I cried because we are so buried in a bureaucratic mess in this country, that my hopes to see this here will likely not happen in time for me. That I, when asked yesterday afternoon by another person living with Dementia “ what are you going to do”, what’s your plan, yes most of us living with young onset have a plan so that we will not go into care. How tragic is that. We discussed my plan, we discussed his plan, we discussed the plan of others, when all it takes is getting rid of the bureaucratic mess and put some common sense into building proper small scale homes within communities, to fix this nightmare called Long term Care. Common Sense can solve a lot of problems if people would go back to using it.
I’m deeply saddened, deeply troubled, by the inability of those in the positions to look outside the box and see the common sense solutions can’t think beyond further reviews, further reports and discussions, about an issue that just needs common sense and action.
Late yesterday I arrived back home from visiting my sister in law for a few days. She is an amazing woman, who has amazed us with her strength and courage to face all she has. She truly inspires me, she has survived more bouts with various types of cancer, lived ten plus years longer than expected, unbelievable show of the human spirit.
Gathering up my little dog Pheobe from my brother and sister in laws, the neighbour’s, friends of mine came out to chat, they brought some difficult news that their ( they refer to her as their third daughter), at 17 was just diagnosed with bone cancer, and was in children’s hospital and would likely be there for six months. We talked about all the elements of the emotions they would all likely face and that we would ask for everyone to put this beautiful young girl on their prayer lists ( yes I’m asking you to add her to your prayer lists.). I brought this up for two reasons, the first being having her added to prayer lists, I will not go into details here as it is not my place too.
The second is to look at and question why does the children’s hospital and they do, such a tremendous job of care, why do they have the ability to support, the child in need( best of the best in Drs. And Nursing Staff, actually all staff,), they treat the patient, as well as provide care and support for the family, they do all they can to ensure the wellbeing of all, they have and do understand that looking after everyone’s needs actually ends up costing the whole system less in the long run.
Why is it not being looked at as a model, for other health care settings, from hospitals, to seniors care? We need to ask the question. During this pandemic it has taught us we must question and demand that better be done, that so many $$$ that are poorly spent on too many layers of management to run the bureaucracy that there’s no money left for the things that actually ensure best care.
After a very heart felt visit, with my heart aching for all of them, I got home, unloaded my car and took my dog for walk, it’s a great way to let thoughts just settle in. Coming back to my apartment I was greeted by my neighbor, she lives down stairs from me, her husband Jake is in a long term care home down the street. She is a bright lively woman, but the toll of the last number of months are taking its toll. Jake is 74, Jake had a major stroke, cognitively Jake has no problems but requires full care otherwise and she was not able to provide it.
We’ve chatted many times in the last year about Jake about her struggles with feeling quilts that he has to be there, about the treatment Jake receives. Yesterday, we chatted for long time, she is furious, she cries it’s becoming a daily thing. She has to fight with all of her being to be allowed to visit Jake again after four months of not being allowed. Jake cries all the time know. She listens to him be told to pee in his pad, then she hears him be told when he requests they change it that he’s only allowed a certain number in a 24 hour period, so they will only do a change when they feel the pad has reached the saturation point they are told to leave them on till. She is furious of all of this, she questions it, they cite all the policies that say this is how it will and is done. She knows that part of his prostate cancer means he know has frequent urination, she asks if they know that( they say oh he had prostrate cancer.? She stands there in disbelief and says clearly no one has even read his file, the reply is well we’re sorry but we have to follow our policies. She pointed out on many points she has brought forward that this is supposed to be “ Jakes home”, she reminds them this is what they promised. She goes on to list so many more issues. She said today she brought it to the managers attention that in 195 days, Jake has been given exactly three hours of time outside, she asked if we locked him up in his “ home”, in his room for 195 days, with only three hours of fresh air and outdoor time, did he think he would survive. He walked away. She would take Jake out in his wheelchair for walks but she’s not allowed. We talked at great lengths about all the changes ( actually dismantling of long term care homes) that needs to happen.
Jake is another of our society who are being warehoused. No consideration given to the fact that sitting in a wet pad for hours and hours is taking away his dignity, takes away and destroy’s one mental well being. She said she actually wishes he would die so he would not have to endure what he’s going through by having to be in a care home.
She would be happy to bring him home if she could have the support put in place to allow it, but that isn’t a available either. This is Long Term Care right know today here in Canada, This is Shameful. This is the way the very people who built this great country are being treated… “our country is not so Great” when it comes to looking after and ensuring our elders are given the care and respect they deserve. This is and must continue to be brought forward, we must use our voices to fight for those who no longer can.
“ I am more frightened by the thought of ending up in any type of care than I ever have been of my Dementia itself”
Quote -@ Christine Thelker Sept. 2020
There is a sense that those of us advocating are doing it for our ego’s, and for some that is in fact true, But for the large majority of us we advocate because we want real and tangible change. The above quote of mine speaks to why advocating is important.
We do not have grand ideas or fantasies about things, we are advocating for real change, the kind of change that impacts others with helpful change in their day to day lives. “We don’t want the impossible we want the possible”@ christine Thelker 2020. This means we want everyone to stop talking about making change happen and actually produce change. Many of us work tirelessly, ( well actually we are exhausted from it), if we were paid for all the work we do we would be living quite comfortably, or at least not struggling to stretch disability beyond what it can cover. None the less we work with a variety of groups and organizations from Alzheimer’s/ Dementia groups to Research groups, Nationally and Internationally. And for most of us this means we are working with somewhere between 5 to 10 at any given time. Many people think it’s just fun, the reality is I’ve never worked harder, it’s important work, there is so much research happening, we have to ensure that the changes that happen are actually impactful in a positive way. For me personally I believe the way forward is “care until cure”, bring things that allow, provide and promote quality of life, until a cure can be found. September was a very busy month with advocating, and my October calendar is already starting to be overflowing. People think I am at home doing nothing when in fact, even though I’ve struggled with many health challenges again, I am pushing to stay active in my advocating. Yes it’s lovely to meet many amazing people globally through advocating, but it is not the glamorous life people perceive it to be, it’s hours and hours of preparing ( whilst living with a cognitive impairment – dementia). It’s about trying to lift others up, to give them hope, to encourage them to keep living each day fully, too focus on all you are capable of not on what you cannot. Most of us are not craving recognition, we are craving change, most of the advocates I know are amazing, kind, humble people, who like me believe that even though it tires us, even though we are frustrated to see that after 25 years very little if any change has happened, we must persist, because if we don’t then for sure nothing changes.
So after an upsetting talk with my specialist, after struggling for weeks, knowing I just have to keep struggling and pushing forward, knowing that winter is approaching, I can’t wait till I’m stronger or feeling better, I need to keep doing those things that are important. Or at least important to me. So with the assistance of my friend being willing to journey along with me, because I wasn’t sure if I was up to this little trip on my own.
Even though that by comparison to many of my little trips and adventures, it truly wasn’t far, about a four hour drive from home. For those who know me that would be the kind of drive I would do just to have coffee. But I also recognize when I am able and when it’s not wise for me to go on m6own, this was one of those times. It was extremely important for me to see my sister in law, before winter sets in, she is important to me, and not knowing when or if I get to see her again, seeing her before winter is always a priority for me. I’m grateful my friend June, who has had a busy spell in her life and we haven’t had much time together decided it was the perfect opportunity for us to have some time together and for her to visit some family at the same time. I was struggling, my breathing wasn’t great, I had a lot of chest pain, and brain pain, but it was a beautiful drive, the colours are changing to fall colours, the highways are quiet. We supposed at Bridal Falls, so I could have a rest, a good stretch, a little walk in the woods to do some deep breathing, it was beautiful. I did our support group call from out in the woods, it was lovely to share a little of that with my DAI family. It was a great afternoon visiting with my sister in law and we enjoyed chatting about old times over dinner. Off to bed early but last night was not good at all, but this morning after much coffee, after a shower and starting to feel like the lighting bolts were subsiding, I could see clearly, I looked forward to a better day, I met up with June, we did a little exploring, while my sister in law rested, at 2, my sister in law and I went to value village, she enjoys going so off we went, then home to a couple hours of rest and ended with a lovely dinner at the keg. I can’t tell you how glad I am that no matter how much my health is challenging me, I am and feel like I’m winning every time I refuse to let it stop me from the important things. It may be hard, i may not be as lively as I’d like to be, but I give everything I can. This has been an important visit for both of us sister in laws. Tomorrow will just be a quiet day of us enjoying our visit, heading home Monday. Tonight I feel as though maybe I’ve turned another corner, the lighting bolts have not been paralyzingly me today, the dead look in my eyes seems to be not as bad, I don’t want to hope for to much, but I’ll take the day I was given today.
On a side not, the crazy often funny side of Dementia, at least for me, I had packed what I thought was dry shampoo, in case I needed it for a quick fix with my hair, so getting ready for dinner, I spray my hair, I can’t figure out why nothings working, spray a little more, shit no for some reason it feels oily, ( my hair is never oily ( what the heck), in a heap of frustration, unable to figure it out, I pin my hair up and back, it will have to do. When we get home I decide to shower because I can’t stand that m6 hair is oily, taking my stuff in the bathroom, I pull out the dry spray again, I look at it, then, turn it around, turns out it is dry spray deodorant, omg, too funny, apparently when shopping at some point and time I bought spray deodorant ( no recollection of why or when), and then somehow assumed it was dry shampoo for my hair. Oh well m6 sister in law and I laughed a good laugh at it. It’s all in a day of being me. Off to sleep know to see what tomorrow will hold.