Something strange is or has occurred, just in the last number of days, yesterday I took great notice of it, but today I totally marvelled at it. I must almost guiltily that the last while with this new added piece of autoimmune dysfunction that I have been dealing with my brain and my dementia has almost taken a backseat. suddenly today it is back at the forefront, not for what it’s not doing but for what it is doing, and it’s left me trying to figure out why? For some reason I am very clear headed, the fog that surrounds my brain normally is gone, it doesn’t feel as thick or heavy, my vision is cleared, my brain feels light and happy. Sounds strange doesn’t it? Feels very strange, like somethings missing. I’m not having to fight to have a clear thought, I have been able to manage things like putting together and cook a lovely meal albeit done in stages and steps over several days, but still I haven’t managed any of these things very well for a good long time.
Tonight I sat looking at my lights on my Christmas tree, contemplating what on earth is happening, I thought about my last week and how a phone call from my doctor and my specialist just before Christmas had me reworking yet again how I am doing things. This came about not because of my dementia but because of this autoimmune piece that is affecting and they are trying to unruffled. But could those changes be somehow helping my brain? I am having less trouble managing my day to day skills, I am able to organize myself ( well ok still not. Like I would in the past) but still better than have been for quite a spell. I’ve also not only paced even my simple tasks differently, I have also had a lot less going on, no meetings, no zooms, or very few, and they have been the more social variety. Not pushing myself, letting my body rest when it wants, all the noise and business of the world left far behind, music everyday, singing and dancing in the comfort of home. Only walking for shorter distances, when my body can manage it. Have all these things allowed my brain to find a happier way to be, has it made it simpler for me to do the things I want to, because it’s not struggling to manage things it simply no longer can? To have the fog lifted, to be given this clarity and sense of peacefulness, contentment is a gift. I don’t know how long it may or may not stay this way. I wonder if when the New Year sees all the activities and meetings start up again, will it overwhelm my brain again., will it cause the fog to return, to fatigue what is at the moment a happy brain.
The dementia is still there, the struggles are still there, but to have a brain that feels light, clear and happier than it’s felt for a long time, feels so good. It makes me wonder if I will have to evaluate how much I’m doing going forward. After all if this quitter existence allows me a better quality of life hadn’t I better but some value and thought into that. Time will tell, in the meantime I shall enjoy that the curtains that have been drawn across my brain for so long have been opened at least for know.
Another Christmas Day has come and gone. Christmas came so quickly this year, which seems in opposition to what one would think. We would think that time would be dragging, living amidst a global pandemic, but for me it feels like the accelerator has been pushed and time is going by so fast that I’m still months behind somewhere. I keep hearing people say I just want this year to hurry up and be over, and yet once time is gone we can’t get it back. I would like the pandemic to be over but the the changing of years on the calendar isn’t going to automatically bring that about. It will be the collective effort of mankind, or not. People have been stressed about having to be within their own family households for Christmas, many broke the rules, many not caring as long as they had the Christmas they wanted. It made others stop to consider the many who spend Christmas alone every year, and to think about and understand what that has felt like for them. I am one who lives alone and normally spends Christmas alone.
Everyone one was extremely worried about having to zoom, with family instead of in person visits. Yet when you think about when we were young there wasn’t the ability to do visits on video calls, and that was just a mere 20 or 30 years ago. We were asked to change one Christmas and something incredible happened because if it.
I actually had one of the nicest Christmases I have had in recent years. People driving by to drop off baking and treats and gifts, greetings across the parking lot, seeing warm and friendly faces as they pulled up, Christmas Day normally spent alone had me see many people to share laughter and coffee, share traditions and joy, I had more people spend time in my living room via zoom, and FaceTime, something that had not happened in recent years. So although I was alone, in the physical sense I did not spend Christmas alone at all, I spent it with friends from near and far, family in Alberta, friends in Scotland, England, eastern Canada, the US, even Australia, ending with a fabulous visit with a friend in Texas, they were lovely visits, my day flew by, I wasn’t alone.
So while many looked at having zoom Christmas as a negative for myself and likely many others who are normally alone, it was a positive. These visits were heartfelt, they were personal, it was sharing and caring. Seeing someone’s face light up, seeing their families, hearing their voices, seeing the beauty in their decorations, the heartfelt laughter, sharing stories of traditions and memories. It was like a warm hug that other wise would not have been received.
I received an email from a dear friend who lives in Scotland, whom I admire very much last night after our visit yesterday and to hear how it was as good for him as me was so heartwarming. The silver lining in the midst of a terrible pandemic shone brightly for me yesterday and I won’t forget this Christmas, and I won’t forget, not for what it wasn’t but for what it was. That’s a wrap.
I actually thought I had written this blog, but apparently I wrote it in my mind but not on paper. I didn’t realize that until this morning settling with my first coffee of the day I thought I would check it before hitting the post button. Except it wasn’t there, it was all formulated in my brain, but the action to actually write it didn’t connect, this is Dementia at work. Thankfully for some strange reason, my brain has decided to hang onto it so it ends up here.
It’s a quiet time, it’s Christmas Eve, tonight I will make my little turkey dinner for my little dog and I, I grew where Christmas tradition saw us have our dinner, open gifts, and then off to church, we never had Christmas Stockings we had Christmas plates, by our beds that were filled with candies, oranges and little baked treats. Christmas Day was for sleeping in, relaxing, tobogganing, playing in the snow. So I will have my Christmas tonight.
I have been blessed with people dropping off baked goods, vegetables, and gift bags and baskets, I’m grateful to all those who thought to remember that I’m alone at Christmas ( not because of the pandemic ),just because I am alone, its nice to be thought of, and although its just drive by drop offs just seeing your faces for a few minutes lifts the spirit, you have all touched my heart with your thoughtfulness. If it was possible I would have you all here for coffee to help me eat all these beautiful baked goods.
Healthwise, as most know I’ve really had challenges since March, and not with my Dementia, although my last testing was not great, It showed my recall has gotten significantly worse, short term memory is worse, but I’m still managing quite well, you become good at adapting and learning new ways to manage the shortcomings.
My other health challenges that began in March, have brought us to now., a call from My Doctor on Tuesday afternoon, all my inflammation markers are high, they know I don’t have an infection or any kind of virus, something triggered my immune system to start fighting in March, it’s like it’s supercharged, they know this is an autoimmune issue, they believe my vocal abilities and my decreased lung capacity are all connected to this, my fatigue, and the list goes on. So the specialist will help unravel it all to see if and what we can do, the problem is much of the medications to help with autoimmune don’t play nice with my dementia meds, so some very carefully weighed out decisions may have to be made. I wrestle with it, I really hope to get some of my physical abilities back, at least somewhat, but if it means losing more of my cognitive abilities quicker I’m not sure.
So Tuesday afternoon I took an “ I feel defeated“ day, I cried, I felt sadness I wondered if this is worth the continued fight. I and we people living with dementia are super-warriors, yes, but we are at the same time, not superheroes, we are still humans with all the normal reactions to abnormal events, we still feel sadness, loss, fear, along with happiness and joy. We have the same ups and downs like everyone else. Sometimes we have to quit fighting and say ” today I just want to feel bad, and sad and mourn for all that is happening,” this does not make us weak, this makes us human, yup we have not lost that. So I took a half-day to feel it, to wonder and question myself as to why I keep fighting, too which I don’t have the answer to except that there are still things I want to do and accomplish despite my complex health challenges.
So I slept for 14 hours, after which I got busy figuring out what in all of it I could do to try to help myself while the doctors try to do their thing. I can’t control the illness or illnesses at this point, but I can do all the things I know how to do to help my body fight. My body is carrying a lot of inflammation caused by this autoimmune piece, I have had no appetite for a long time, it’s been hard, I should be a tiny size but I’m not because of what’s going on in my body, and no appetite means it’s hard to give your body what it needs to fight. So Yesterday I set a plan in place to help my body, I have to eat one balanced meal a day, seems simple but when you zero appetite it’s harder than you think. I will have to prepare and make that meal, which on bad days is difficult because of my fatigue, and my dementia so I have set reminders on my Alexa so that at five pm every day it will remind me to sit down and eat. It will be a self-prescribed force feed, but it has to happen.
I will be continuing to work with my physiotherapist Kathy to help keep me mobile, Kathy has been a godsend to me and has become an integral part of my health team, as well I will continue to work with Lise Halverson, Lise owns Noodle Legs.ca, the company is new to Vernon, I started going to her osteo fit class this fall, she has regular classes as well as classes specifically for people with dementia. She has been a tremendous support and helps me, currently because the doctors don’t want me pushing but want me to do small amounts we are working outdoors social distancing of course. We use activator walking poles which were designed by Occupational Therapists at the women’s hospital in Vancouver, they are different than regular walking poles as they give you a whole-body workout. So if I can do 15 minutes that’s what we do, it’s slow steady at this point, a hard pill for me to swallow to go from walking 8/10 miles a day to a block or two, but hopefully, by spring, I will be well on my way again.
We are lucky to have this company here, their program is designed by the women’s health hospital, and I think many can benefit, especially as we age and balance and coordination, etc become something we need to pay attention to.
It’s a fine balance to try to keep moving without depleting my body and ending up in bed for days, but I continue to try with the support systems I am fortunate to have. It is also possible that this is just part and parcel of my dementia, vascular dementia has a huge component that affects the immune system, they are and can be quite intertwined so it becomes quite complex. People tend to think dementia is just about memory loss but it is about so so much more and affects so many of our body systems. I’m grateful to those who help me in the fight to maintain as best I can, and to those who understand my need to have normal reactions at times to abnormal events.
The New Year will hopefully have more answers than questions, but I have learned that the complexity of my dementia, means that it challenges even the doctors, but I am grateful that they continue to try to help me have the best quality of life I can, and if at the end of the day this becomes another new normal I too will learn to manage that.
In the meantime, I will be grateful that I am here for another Christmas Eve, life is fleeting it’s best to always be mindful of that and be grateful for what we are given.
Wishing everyone a pleasant and peaceful Christmas Eve.
It’s been a year of watching people struggle to try to find positive things, we are after all in the middle of a global pandemic, something most of us never thought we would see in our lifetime. After all, weren’t things like pandemics, couldn’t or wouldn’t ever happen to us those things just happened in the past, surely not something we would have to worry about in our lifetimes. But if we look at the past it has many lessons for us today.
I think about how fortunate we are that we live in a time, that allows us to stay connected via video chats, facetime, zoom, and the like. I think about how fortunate we are that we live in a time that we can call up or go online and order what we need and have it brought out to our car. I think about how fortunate we are that we have things like ICU’s and ventilators to give people a fighting chance.
There have been many positive things that 2020 has brought us, like allowing us to take a step back, take time to breathe, spend time with our families and those we love, and really think and look at what truly is important in our lives. A forced time out if you will.
Enjoying some quieter days, instead of being so rushed all the time, that we are and have not actually been living, the old saying is: are you working to live or living to work, has come full circle and given us the opportunity to really put that into our individual perspectives.
Yes, we are living with many unknowns, yes we have had to change how we are doing things, and this pandemic has brought a lot of tragedy and heartbreak, but if we take a moment to think about how if we even think back to 25 or 30 years ago, how different it would have been when we didn’t have all the technology to help us stay connected when we didn’t have the medical capabilities that we have now. So I think if I had to live through a pandemic, this is the time I will be thankful for the ability to stay connected to stay safe, to have protocols put in place to help us do that, it’s inconvenient, that’s all.
We have leaders doing all they can to help us get through this, yes there will be some things that will not survive, businesses will close, others will thrive, but if they didn’t do the things they are doing it would be much worse. It doesn’t matter to me what political party you are affiliated with, they are at least in my country, are working together in an unprecedented manner, for the good of all, and we have watched, and for the most part, we are working together to make it through, doing our part as well.
We will in all likely hood see many things done differently going forward after the pandemic, but looking back in history these are the very events that propel us forward. It will be up to us as a society and as individuals to decide if we go forward in a positive manner or not.
Will we take the lessons given during this time, and let it make us bitter and angry, or will it leave us a little softer and more caring of the people and the world around us? I am hoping for the latter.
So I am grateful for the many positive things I have seen, witnessed, or felt over this year 0f the pandemic. 2020, it will definitely be one that won’t soon be forgotten, and just like our parents talked of the wars, the depression, we will talk of the year of the pandemic.
So moving closer to the end of 2020, I hope we can and all take time to think about the positives so that as a new year unfolds, we can move into it, with a hopeful and positive state of mind, and we look forward with hope.
Yesterday I spent many hours sitting quietly with my Christmas lights on, somehow they create a sense of peacefulness and calm. I sat thinking about the last couple weeks, the weeks coming ahead. We have some scary times looming, from just before Christmas until end of January early February( that’s my opinion only). Mostly because people don’t seem to understand that although Christmas is supposed to be different this year ( and many are refusing to do what’s required), Christmas can still happen, it can still be great, better to do it different,this year then put others and yourself at risk and then have people missing from that table for all future Christmases. It’s about attitude, it’s about understanding that if you truly love others and can love selflessly, then you would sacrifice doing things the same old way, for a period of time. This isn’t about conspiracy theories, yes we can make it about anything we want, and some will, but what it really is about is love. yes it’s that simple, do you love your fellow man enough to make some changes and short term sacrifices, or is your love directed more at yourself and your individual wants, and for the most part they are wants not needs. so what made me think about these things so deeply, I’ve been troubled watching the reckless behaviour, the disregard for others. Especially given that I’ve also had to watch some dear friends lose a son, another friend lose her husband, and another friend have one of their young bright 17 year old having to spend the next nine or months in the children’s hospital, undergoing unimaginable treatment, being away from her family and loved ones. While another cares for her terminally ill husband. And all those who care about them understanding the importance of not taking the risk and bringing and putting them more at risk, and not being able to be there in the ways one would like to be. This is why it’s so important to do our part, so that we can be there for those when they need us the most. Wearing a mask, staying home, changing how and who you spend Christmas with for one Christmas, for a period of months, is nothing in comparison to watching people you care about going through these events, it’s such a simple sacrifice, it’s a show of love to our fellow man, it’s a show of love.
It’s a strange one for sure, the day has been relatively quiet, a very simple day, nothing stressful, other than time going by at break neck speed.
It’s 10 p.m., I’ve been in bed since about 645, was having a great sleep, when suddenly I awoke with a real jolt, because what the heck was that, it can’t be, I could smell such a strong smell of roast beef, like it was just out of the oven smell of roast beef. But wait a minute, my sense of smell and my sense of smell have been gone for more months than I can actually remember, but I smell roast beef, I sit in bed for ten or fifteen minutes trying to figure out if I’m dreaming, or if I’m actually smelling roast beef.
It has me standing in the middle of my living/ dining area trying to figure out where this strong smell of roast beef is coming from, and know I’m thinking oh my how I would love a roast beef sandwich, except it’s 10 o’clock at night, no ones cooking roast beef least of all at my house but the aroma is still here.
I am completely baffled, now the dog is up looking at me wondering what the heck am I doing and can we please go back to bed look. I’m back sitting in bed still wondering if I’m actually dreaming all this or what?
I’ve decided I don’t know if this is my brain or dreams or what but I’m going to laugh about it, think to my self, wow, that roast beef smells so darn good likely the best roast beef I could imagine.
Yup this is dementia straight up at my house, asleep but awake, awake but sleeping, who knows, chalk it up to another of the many mysteries of life with dementia.
It makes me want to run around the house trying to smell things, but it’s pointless because all I can smell is the darned Roast Beef, and nope haven’t cooked one for a long time, because I know you’re wondering did I cook roast beef for dinner. I have to try to go back to sleep unless I actually am, regardless I must. Tomorrow I will be doing smell tests to see if this is just a wired set of. ??? Or if my sense of smell is coming back. I’ll tell you one thing dementia ain’t for sissies.
Yesterday I felt like a slug, like I was hit by a speeding train, waking up feeling like I hadn’t slept in a week, barely enough energy to actually or what I would consider being looking after myself. Unable to manage anything, it was a day spent trying so hard to just accomplish what would or should or used to be so something so simple like a walk to the doctor’s office, became a monumentus task, leaving me even more exhausted, humm if that’s even possible.
Today, after struggling through the day yesterday, and believe me it was a struggle, I woke to feel refreshed, bright and alert, like somehow my waking feeling like I hadn’t slept for a week yesterday, I was given that today. It’s so exciting to wake up and feel like you can almost take on the world today. What a feeling! It’s like a “joy to the world” kind of thing. To be able to manage a shower, start a loaf of bread, actually get dressed, and do makeup, it’s something so big, yet most don’t even think about it, it’s just part of the daily routine.
But here’s the thing, learning to live in this newfound way, never knowing from day to day, what you may be able to manage, what your energy will be, and or how long it will last. Then there is the cognitive piece, day to day, it changes along with your overall energy and abilities. You never know how long the battery charge will stay in the green, and some days like yesterday the full battery pack, physical and cognitively is in the red, and no matter what you do, you just can’t get it into the green.
It is these things that make this illness so challenging and so hard for others to understand. It also causes a lot of frustrations for those of us trying to navigate through it and get some understanding from those around us. For me, that’s not as difficult as for some, because I live alone, but that creates a whole host of other challenges, for on those days when the battery is empty, trying to manage a meal, a cup of coffee, become unmanageable, and meals well forget that, whatever is sitting there, that’s what you have, or on many of those days, the energy is so drained that even finding the energy to have that meal is often too much.
So on days like today, managing to be showered, ready for the day by 1030, is like this huge gift. I always think about how fortunate I am, for this illness although causes a great many struggles, and looking down the road to the late stages is terrifying, being able to fumble and bumble my way through the days at this stage, is so much better than what many face each day. I don’t have to look very far around to all those I know to see what many live through and deal with, and that doesn’t mean mine is any less it just means I can keep myself focused on my good days, on my good moments, and on those bad days remember what others are dealing with and remind myself, it’s not that bad, yup it’s not that bad…not yet.
After spending 18 hours in bed yesterday, I woke to feel refreshed or so I thought. I decided to do a short stroll on one of my normal easy walks, it was labored, a lot of chest pain, which is more frequent now.
But feeling like I had managed it and that it was good to keep trying, after a nice video chat with my dear friend Janet, and spending the rest of the morning trying to get Christmas cards ready to send. I had cards here, as I haven’t sent them out in a few years, or at least not that I recall, so I decided I would get the cards ready that I had on hand, I can mail them down the block without having to go inside a building.
So thus begins the never-ending jigsaw puzzle, that has become my daily life. I could picture someone’s face, but couldn’t put the name to it, and where or where would someone’s address be?
Having to reach out to some to get the information, and trying to figure out who I was sending cards to finally deciding whoever popped into my mind I wrote a card to, all else will have to suffice with the Christmas E- letter, hoping all the right cards got into the right envelopes, its all so very challenging now.
Then my call came from my Internist, Dr. Yacashyn, he is a lovely Doctor, who has always shown me such kindness and compassion. The first thing was he noticed my voice having issues again, this is an ongoing and never knowing when or if it’s leaving me forever. The second thing was how you can hear even when I’m talking that my breathing is labored, he then goes on to tell me that the last tests he did last month, he is satisfied that I am maintaining as best as can be expected, that although things are not as good as we might like to see he is happy that there is not even more of a decline, so he will continue to monitor me. The next thing was how I’m doing overall, we discussed how my walk two days ago saw me in bed for 18 hours yesterday, and how a short stroll today, has left me extremely fatigued.
He spent explaining to me how I have had a very challenging and complicating year with my health, with many difficult pieces at play, and that I should be taking it very very slow, he said it will be a long process and although frustrating for me, I have to always think about slow wins the race. He said considering all the complicated factors my health has seen this last year, I need to be kinder and gentler with where I am and how I am managing.
For me, he is always reassuring, I don’t like how it’s impacting my dementia, and it’s so hard to tell which is doing what, the cart before the horse or the horse before the cart? I can’t decipher it anymore, and at times I wonder if they struggle with the same thing.
This all left me in a puddle of tears, which I let flow, wondering how much more of the losses I can endure. Most people who live with Dementia have many complicating health factors that either contribute to their dementia or dementia causes other health issues. This is not as easy as people watching from the outside so often think. Mostly because they spend very limited amounts of time with us, to really understand our challenges.
But tears are gone, I am back to trying to figure out this mess I have created with my Christmas cards, thinking it could bring many to shake their heads if I got them all mixed up, but might cause a laugh or two as well. I also have managed to change the linens on the bed, which took almost two hours to complete because I have to keep stopping to rest, but at least its done, and I can look forward to climbing in early again today, and doing as the specialist said, rest, rest, rest. Tomorrow will likely dawn bright again and hopefully, the weather will allow for another short stroll. I’m not done yet!
It’s one in the afternoon and I’m back in bed, I think I over did it yesterday, a very long walk, which while it was so enjoyable was likely to much for me at this point, and then I suffer a set back. It may set me back for days or if I’m lucky just this one. I will rest, read, watch some Christmas shows and nap my way through the day. In the past pushing through was the norm for me, but since being sick in March, there is this new piece I am having to learn, don’t push, take things at a slower pace, but somehow on a day when I’m feeling really good like yesterday it’s hard to remind myself of that. No two days are alike anymore, trying to manage and schedule meetings, finally gave up on the calendar, was always on the wrong day or week, time is a challenge as well, so thankful for all the texts, messages and reminders so that I actually get where and when I need to, it may be all on line but it still creates a challenge for those of us living with dementia. I wonder why it seems to continually be a challenge for us beings to know and follow what is best for ourselves. We encourage others to, yet we seem to overlook listening to that advice for ourselves. So this next stretch of time while getting stronger and trying to gain endurance to get through a day there will be a focus on not overdoing, Too enjoying the better days, and being mindful of how much I’m doing so that instead of ending up back in bed I can hopefully stretch those good days.
I have learnt to overlook, laugh at and about the many blunders that my dementia creates for me in a day, so know I have to learn to manage this piece, which I don’t believe is being caused by my dementia but rather from ending up so sick in March and dealing with all the things that has brought about since, I will have a conversation I will have with my Internist tomorrow.
Sometimes I am my own worst enemy., but that also comes from being on my own and having to rely so much on self. Another lesson, and onwards I go, I’m still standing.
Today, I’ll enjoy my relaxation day, take it as a day to rest up for a very busy December, which seems funny considering I’m in my bubble of one, but zoom brings a lot of people into my home, for which I’m grateful, for without it the loneliness would become unbearable, so whether a meeting, a webinar, I’m grateful to have those things at this particular time.