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.
You can listen here:
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.
The day started with me having trouble getting myself oriented to the day/ date, then trying to get the final shopping to stock my house so that I can stay in for a couple months.
Yes that’s my plan I’ll reevaluate after the New Years. It was a big job for me, it drained my brain power. A lost phone, trying to manage a comprehensive list, shopping of any type challenges me know but this really tested me, especially trying to ensure I didn’t miss anything, which is quite normal for me with any list, whether it be a recipe or a grocery list, it is challenging. None the less, one store had 90% of my list, which really made me happy, after unloading and putting away, which has been another challenge as my space is limited snd no storage space, but I’ve spent weeks working on it every day so things found a spot, then I was alerted to something I wasn’t aware of : Dementia Connections put out their list of four must read And there so was along with three other incredible authors, I was so honoured, I was beaming with delight, I sent it off to my publisher right away, a great sense of pride washed over me, somehow a peacefulness that maybe my effort to help others and make a difference was being realized. I’m very humbled. You can see the list here:
The realization that there are many things I’m misplacing like my phone earlier in the day, which created a lot of havoc for me once I realized it was lost, eventually it was found, where in fact it had not been lost, I had just gotten off track left it in an unlikely spot, because I’m losing focus more often. Many little things in a day that are missteps, misplaced and “oh what the hell” moments. They are becoming more frequent. But amidst the down turns there is the things that pull you up, like the Dementia Connections List or the surprise of this beautiful friendship Rose I received yesterday, a friendship I’m blessed to have made and had I not been diagnosed with dementia and if she had not been diagnosed as well and had I not written my book, our paths may never have crossed. So today I’m Grateful, because no matter how much my Dementia has taken from me or how much more it will, it has given back ten fold in the most delightful and unexpected ways.
So over the last two days, I have had to sit and weigh some very big things. Now for those who know me they know, I have been extremely cognizant of the importance of being vigilant due to covid 19. It has meant social distance visits, mostly outdoors, not going out for lunch or dinners, a life that is already very solidary became even more solitude. But the last two days, learning much about the realities from very trusted sources, sometimes I feel so grateful for all the opportunities to work( ok volunteer my time) with so many talented and gifted people. But in all of that, there is a lot to be learned within those meetings.
However, I may have Dementia but I am far from stupid, no one has had to tell me to wear a mask, or to limit where I go and my contact with others. I can see for myself, I can add up the death rates, I also know what happens if our health care system and its workforce get sick, no one has to tell me, and given all that I know and all that is coming in the coming weeks and likely months.
I have made the hard decision because I live alone, there is no one to take care of me because my health is already so unstable much of the time. I have been over the last several days bringing in enough supplies to get myself through the next couple of months. I have water, I have necessities, I have food, the rest to come tomorrow, after which time, I will be a bubble of one for the next few months, me and my dog Pheobe, we will keep each other company, I have to look after my health, I want to be able to stand at the end of this pandemic, so for a time, for this time, I become 100% isolated.
I hope to be able to see people via video calls, facetime, and zoom, and telephone calls, it is those interactions that will keep me afloat, it will be the piece that keeps me able to manage my mental well being. I also want to keep others safe so this is the best way forward for the time being.
Thankfully, the new measures brought in today have helped me in all of this, people are to stay to just who is in their household, I am a household of one. this also makes me acutely aware of the pitfalls of being on your own. Not having anyone to talk to or have coffee with or share your worries or fears, but I am not the only one who lives alone, so I am asking that if you know someone who lives alone, take the time to call and chat, you might be the one person who kept them treading water on a bad day.
Thankfully I have projects on the go, I also have my various research and Dementia groups and Organizations, that will keep me mentally stimulated. Time flies by even during difficult times, I’ve endured many difficult days in my life, this is a difficult time for everyone, I hope everyone does what they need to do to ensure their families and their own well being while continuing to think of those who do not have a support system around them. I will be Ok because I have every intention to finish things that have been put off because of this pandemic. This weekend, I will decorate my little space, while listening to Christmas Music. I will make Christmas Dinner and smile watching my dog enjoy hers, and I will reflect and be grateful for all the good that is still to be had and that there still is in this world, and I will look forward to all those phone calls and chats.
Writing will help me as well, another book to write,? Well, you never know. But the writing will document how the Covid 19 has impacted people living with Dementia, it information they are wanting to gather my writing will help with that.
I will keep all in my thoughts.
Yesterday was the first day since the start of this pandemic that I have felt angry, actually it’s the first time in a very very long time, that I’ve felt angry about anything, and it’s spilled over to today.
I’ve felt many things in the last number of years I have had many things come at me that could or perhaps should have caused me to boil over with anger, but I’ve felt frustration, sadness, disappointment, and a whole array of emotions, but the anger that I felt yesterday and today was not something I saw coming, but there it was, and here it is.
I was going to write about it last night, decided I needed to really think about where and what was driving anger that has left me very unsettled because this kind of anger is not my norm. Many times today I started to write and then stopped. I finally feel able to write about the anger and the thing that really triggered it.
I’ve always tried to honour and respect other’s opinions and believe we all have the right to our views. But there are times when it can and does sometimes more harm than good.
Sometimes it does actually waste a lot of good energy on something that has no positive impact.
That’s where the anger came from, people wasting good energy, on something that serves no purpose. Other than to make them feel good I guess at expressing their right to free speech. But it angers me that they don’t stop to think about the hurt they may be causing others. Sometimes we should exercise our right to free speech, if it will bring something good, something positive to happen.
Conspiracy theories, refusal to wear masks ( which may be an inconvenience, but that’s all it is), people protesting encouraging others to not follow the guidelines set our by our top health personal. Does not generate anything positive.
I wonder if they give any thought to how that makes those who have already suffered the losses of a loved one to this pandemic, or the thousands and thousands of people suffering the “ long Haul”symptoms wondering if they will ever be well enough to resume there lives. Have we become a society that the “me and I” that we give not thought to how our actions impact others.
I wonder if people understand that yes there is a concern, if they don’t want to believe the health officials, or our government personnel, then perhaps they should figure out how to do true legitimate research, to where the science is right there, the scientists know.
The doctors who are working in hospitals that are at or near capacity know, maybe it hasn’t impacted those people who are shouting out about conspiracy or how we shouldn’t listen or follow the rules. Maybe it hasn’t impacted them yet.
But when it comes knocking are you going to forgo your loved one being treated because after all you don’t believe you should have to take it seriously or follow the rules, should we be asking those who don’t want to follow the rules to provide their information so that we can put them to the bottom of the list should they need treatment and give it first to those who having been doing what they can to help protect not only themselves and their families but others as well. I wonder how they would feel then.
You see for me it isn’t about me, I can and will do what I can to take care of myself, but I do care about others, I care how it makes someone who may be trying to manage and cope, while their loved lays in a hospital on a ventilator fighting for their life.
Maybe all those people who think it’s not that bad should be rounded up to donate all that energy to helping in care homes and hospitals, maybe if they see first hand they might think before wasting their energy and time on something that is of zero value in the bigger picture.
people are worried about their jobs, about businesses closing we all are, but if we first don’t all do our part, those things will all be effected anyways, people will be to sick to work or shop, or anything, yet we have the ability to do something by all doing our part, so why aren’t we?
My anger is gone know, displaced by a deep sadness over what I see, there is still much good in this world and I’ll pray that good wins, because at the moment that’s all I have. By the Grace of God go I.