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.
This is my treasured quilt, and this is story of my quilt. There’s the reason for this quilt, and for deciding to share the story about the importance of this quilt to me. My husband died in 2005, I was 47 years old, my life shattered in that moment. I often think that I never have recovered ( ok the honest answer; you don’t ever recover), you learn a new way to live, it’s a missing piece that can never be filled. Yes I know you can go on to love and care for another, but the relationship you have with someone new, but it’s it’s own relationship, something totally different. The love shared and the love lost when someone dies remains. It takes a special place in our hearts. so after my husband died a very dear friend came, I can’t tell you how long, weeks or months, because although I was going through the motions of life everyday, I think I was in a state of being numb for at least a year. Yes I was doing all the things I was supposed to do but I was running on another plane( that’s the only way I know how to describe it, it’s like watching your life from afar, you’re in it but you don’t feel part of it.My friend came and sat with me as I went through my husbands clothes., we talked about the things the two of us enjoyed together, the things that brought memories about our life together, as we talked I would say things like this was his favorite shirt, or another piece would remind me of another time and moment. My friend made this memory quilt out of the pieces of his clothing, added pieces that were representative of our life together, like our love of our coffee time, golfing,, hockey, many things. The point is that for the last 15 years this quilt has brought me a great deal of comfort, when I’ve had my hardest days, my sad days. This memory quilt is always the thing I wrap myself in for comfort. So I decided to share this story, because there a number of days lately I have needed and wanted this quilt around me. For things are difficult for many, some very good friends have suffered some tragic losses recently, others are going through extremely difficult times, and I wish more than anything that I could wrap them in something that would provide the comfort I get from my memory quilt. It’s about finding ways and things to do when people are struggling, when people are hurting. So I wrap up in mine, it brings me comfort by reminding me of the happy times, it reassures me. There is many other things besides memory quilts . This quilt is about more than memories, it’s about love, the love between two people, the love between friends, it is so much more than a quilt. I will be forever thankful to the friend who thought to sit with me in my time of sorrow, talk to me about my much loved husband and then weaving it into something so special. And with so many people suffering unbelievable losses, whether from covid or other things that come to derail us in life, sitting with my quilt lately has reminded me of how much we need to understand , and offer extra kindness to people. There is a great many things we can do offer or suggest when the time is right, but things like mommy quilts, brooches set out in a special way too a canvas and framed, a book of photos of special places or times spend together. A small note or letter, framed or set in a coaster. It’s difficult right know for all those going through these living changing and heartbreaking times, and it’s harder because of the pandemic, so I’m hoping this little article will give some the idea on things that may bring some lasting comfort, something that will carry through the coming years. My quilt is well loved after 15 years.
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.
There are moments in time that change the world for those living in that particular space of time. Things like wars, depression, and pandemics, and here we are in 2020, again in one of those spaces of time, the world has been hit by a pandemic.
This has and is creating havoc for all, fear, uncertainty, apprehension. None of us like living with the unknowns, we have become creatures that like to control. We have also become creatures who exhibit a lot of self-interest and carry a great amount of entitlement. We became a society that has based ourselves largely on materialistic ideals, bigger, better, more, more, more.
I hear people talk about their rights and that the lock down’s happening are against their right, they want to shop, to buy whatever types of goods they want when they want. That’s a frightening thing for me, they say they are worried about businesses surviving, and that they don’t want anyone controlling what they can do and when. Yet when you peel back the layers that’s exactly what has happened, people were controlled without realizing it, big business, commercialism, brainwashed people into believing they needed things, had to have the latest greatest of this that, and the other thing. That we needed to buy the next greatest thing out for our kids because Sally’s parents down the street were making sure she had, they convinced us to climb onto this fast-moving conveyor and run to have more, that we no longer could sit and relax at home, we needed to shop at all hours of the day and night, all days of the week.
So truly now that there is a pandemic, and we are being told we can’t do those things ( totally unnecessary things), that keep people in debt, stressed, and only keep the big players making more and more money, people are are willing to or unable to see the very thing they are fighting ( being controlled), is the very thing that has happened.
Hearing people say things like Christmas will be ruined is most unbelievable, Christmas was never supposed to be about shopping, and scrambling and robbing people to have the best gifts under the tree. Hearing that just confirms to me how truly sad the state of being we as humans are in.
Wars, depressions, pandemics of the past, have shown us that in order for us to thrive we must first face adversity and change. We are in a great time of change. We are at a crossroads, are we willing to forgo the human element, do we care more about our right to indulge ourselves in commercialism, that we are willing to refuse to do what we know will help and protect ourselves and our families? Have we become the society that has placed such little value on human life? Have we lost the ability to do what we must for the greater good? Yes, some businesses will not survive others are thriving, new ones are finding their way, others are adapting to new ways. We don’t want anyone’s business to fail but we must not let commercialism take precedence over taking care and looking after our very beings. For if we fail to look after the people the businesses will not survive anyways.
I was on the same trajectory as everyone else, I rode the conveyor along with everyone, that is until my Dementia hit, it was like being swept away in a tsunami, being washed ashore in unfamiliar territory. Through that, I started to have to survive the multitude of losses, and they keep coming. But I have survived the many changes and challenges, and know as I walk through the uncharted time of walking through a pandemic, I know have a new uncertainty, trying to keep myself safe, knowing if things get really bad that I could be one of the ones if I get sick who end up being triaged and not getting the care because of my diagnosis.
Yet I don’t and can’t live with that fear, I have to look at doing all I can to stay safe, and in doing so it means I am also doing all I can to protect others. I am determined to come out the other end of the pandemic, and yes there will be an end just like war, depressions, and other pandemics there will be an end. I have to stay positive, I live alone, I have no one to help keep me calm, to help me destress, so I have to work hard at keeping myself in a good place mentally and as physically well as I can.
In past times, they did not have the ease of news any time of day or night, or the briefing by our public health, people heard through newspaper and through other people bringing the news from other areas and new what to do, and they did what they needed to do. It saddens me that we know have to be told and when told we want to create unrest over it, instead of pulling together and doing everything we can to help all get through this time.
This means I look to the future, and hope that as we move out of this we come out with a world that is less hurried, less about greed, more about helping, caring and making the world a brighter happier place. Where we place the value back on the human being instead of $$$, things and stuff. Where our elders are looked up to and everyone ensures they are looked after, where we can walk down our streets and around our neighbourhoods feeling safe and knowing our neighbours long before a catastrophe happens in our lives or theirs. Where we hold the door open for someone, where we are not to busy to stop and help.
Yes, those things still happen, we see people pull together to help, most of us have felt the kindness that can and does surface, but I hope after this pandemic it becomes the norm. I hope we go back to The small mom and pop businesses thriving, I’ve never liked big box stores. I hope as and when we come out of this pandemic knowing full well life will be forever changed because of it and because change is part of life, we see the human piece be the piece that super cedes all else.
So on the lighter side of Dementia at least my Dementia, and I don’t write this to make light of the challenges and difficulties, but it’s important that I am able to find laughter amidst my ever-changing being.
So many changes have been occurring over the last several months some more noticeable than others. An while I have been ensuring I have projects to do and things to fill my time and engage my brain during our isolation due to the pandemic, I had thought to buy myself a jigsaw puzzle. Yes, they are good for us, no they are not a waste of time, and they bring enjoyment, however, I come to realize I don’t need to buy a jigsaw puzzle because my dementia has provided me with my own real-life jigsaw puzzle.
Yes, my life has become a never-ending jigsaw puzzle, trying every day to find the lost bits and pieces to manage through the day. In some ways it somewhat frightening, however, I instead have decided to embrace this new chapter of challenges, and fill my time each day looking for those pieces of the puzzle. This morning I was looking for the apron that I wore while cooking yesterday, I spend a couple hours trying to find it to no avail. Then I decided to look for the ziplock bags that I have not been able to find for three days, I found them while sidetracked looking for another misplaced item, there were my ziplock bags in my little cabinet that houses my linens, hmm, not sure what the thought process was to have that happen. Still did not find the apron, strange, I have two that normally hang in the same place, but nope it’s not there.
However, I decided I must know to decide to find my hair curlers, its the first day since March that I felt well enough to actually do my hair and put on full makeup, this made me very happy, its been a long haul, and hoping not to have a backward slide.
It felt good to have a day where I actually felt productive, and that I contributed to a level that I can be happy with. I take the small victories, I can no longer manage for the number of hours or at the level I did even a year ago, but I manage.
Towards the end of the day, time to put together dinner, going to take out a pot for steaming some Broccoli I was delighted to find my Apron, I laughed, a really good laugh at the silliness of things lost and found, and at how in the end the pieces of the jigsaw that is now my life find their way to be where they are meant to be.
I know its truly not a laughing matter, that it is another sign of how things are changing for me, but I chose to embrace it, laugh about it, being frustrated, and creating stress and anxiety for myself will do more harm than good, and besides while being isolated, it does keep me busy, and using my brain, in anything than normal ways.
This morning I woke up to receive the go-ahead to share and post an interview done last week by Hanh Brown of Boomer Living, they have published it now so I am happy to share it with you all. I really enjoyed this interview and have since been asked to take part in a virtual event in December that Boomer Living is doing and I will be doing a short speech. I take all of these interviews, speaking engagements, and the work I do very seriously, I also understand the importance of being my true and authentic person in all these things.
I do it for no other reason than to try to bring awareness, change, and hope to others, to make a difference. I don’t want to waste my life feeling sorry for myself, wallowing in self-pity, using my eneg=rgy in all positive fashion, helps me live my best life, despite living with Dementia.
So I am grateful for those who have helped me in my pursuit to help others, by promoting my book, doing interviews, providing me speaking opportunities.
I know the day will come when those things will no longer be possible. I can hear in this interview, how my dementia is changing, I hear my mistakes, dates wrong, the hesitation in speaking trying to find and formulate the words, yes, I see them, I hear them, I live with them. But I do not let them stop me from my desire to be a voice for those who have or cannot use theirs, I think about all those people each and every time and try to right by them. I feel a sense of responsibility.
No there is no glory, no accolades, there is no need for those things, if it was the goal to attain those things, I would have taken up acting or singing or something. This is about contributing in a meaningful way during my time here.
Life is short and fleeting, to know that when the end is here I have done my best to make the world a little better in some small way, means that I have lived, and that is enough.
Thank you, Hanh Brown and Boomer Living, this was a beautiful start to the day.
Our mental health is and should be something we all pay attention too. I always have, I go seek help, when and if I feel I’m faltering, whether through my doctor, counselling or by attending my dementia Alliance International On line Support Groups or other mental health options there are. My mental health is at the top of the list when I do my daily check-ins with myself, it’s something I do every morning. Since our first lock down in March due to covid, and because of being ill for months, it has been extremely important that I keep my mental well being locked after. Many don’t know how or what to do to look after there mental health, because a large part of society has been running in high gear, running to work, running to meet up with people for dinners and coffee dates, shopping, running to the gym, to all kinds of things signed up for, running kids to all kinds of things to keep them busy, so no time to actually stop, and just breathe and just be, to hear your own thoughts, think about your happiness and well being from the inside. And then the world as we new it stopped, ( this is for me just another stoppage, my world as I knew it stopped with my Dementia Diagnosis), so maybe for me it’s another of those often unseen gifts our dementia gives us, we have already had to readjust our whole being, learn to adapt to a new way of life but for many, all of a sudden they don’t know what to do with their thoughts, we were too busy in the past to hear them, now they are paralyzing us. We have many months ahead of us that are going to challenge us all, maybe in ways we can’t even imagine, so I know that keeping my Mental Health in good condition is vital to coming out the other side of this as good as when it started. This starts with keeping myself focused on the things I can do, not thinking about the things I can’t do right know.
Living alone makes it more important, there is no one to have a coffee with and talk about things, to help keep each other in check, so doing so myself is truly not an option but a necessity. I look for things I can do everyday, often just little things, and even though I have recently felt and realized another round of brain slippage ( my term for more cognitive challenges due to my dementia), so a lot more of the things I could easily do are now much more challenging, I’m running into more of those things daily, so I have to manage them find new ways of doing things or be frustrated and upset all the time by them. I choose to manage them. Lots of people struggle with this because we are so used to doing certain things, we think we don’t want to or wouldn’t like doing things that are not part of our norm ( again the gift of my dementia, everyday takes adapting, adjusting, reconfiguring, ), so winter is looming, instead of trying to maintain doing things as in every other year, we have to do this one differently, maybe that means putting up the Christmas in November instead of December, or having Christmas in January instead of December ( I did that one year out of necessity years ago, it was and still stands out as one of my most amazing Christmases.) my tree went up yesterday, today will be doing all the bits around that. Listen to music 🎼 instead of the news, The news can overwhelm us, we don’t need it every day, with technology you can get the pieces you really need when you’re able to manage it, we don’t need it coming at us for an hour or two every day.
We must find things that will keep our minds and our hands busy, the two things that together can really impact our mental health, things like adult colouring books jugs as puzzles, painting, drawing and yes even writing, is good for our mental health, and I can hear the sighs, of I’m not doing that I can’t do that and that’s just BS from many, but don’t knock it till you try it, you would be surprised at something as simple as putting a puzzle together or colouring a picture can change your mindset. I realized that I was really going to have to ensure I had those things on hand for the coming winter. My walks can continue, also good for our mental health. Try baking or cooking something new, sew, work in your shop or garage building or fixing. And stay connected, do the old fashioned phone calls, do video calls or zoom calls. Connect with people that you often wonder how they are but are always to busy to pick up the phone and call. Texts are great, but the sound of another’s voice is so much more up lifting.
All these things help keep our mental health in good shape. So has we all try to navigate a rapidly changing environments, and how we go about living, instead of being angry, instead of worrying about conspiracy theories or how about we focus on doing our best and our parts to help lift each other up, be cheerleaders for each other, maybe we can’t do it face to face but we can and still have the ability to be a light that shines in the dark days, together instead of fighting each other and arguing about how bad it is or isn’t maybe let’s put our energy I do ensuring we are doing our part to keep our mental health healthy, and that of all those around us who may need that simple phone call, so as we move into 2021, things may be different but we can still be standing strong.
Chrissy's Journey 