Category: Living well with Dementia

I have received several messages with people wondering if I am OK, I want to say thank-you to all of you, your kindness has definitely, made this last stretch easier. I have not been reading for two reasons, one I am away from home and will be for the next undetermined amount of time. . , I am away for personal reasons, family reasons, but the particulars are not for me to tell or discuss, it is not my story to tell, so I won’t. Just know that I am ok, that due to being remote, wifi service is not reliable, but I will return to meetings, groups etc. as I can for the coming weeks.

This sudden and unexpected events, has brought to my attention just how very important the connections and friendships, and support from all those various groups and organizations are to my well being. Being without them the last few weeks have been challenging, but I am figuring ways to get busy while away from my home.

There is a lot happening in the advocacy/ activists dementia world, I do wonder how much is actually being heard given the state of the world these days. No matter how much will actually change during these challenging times the work must continue, the momentum for change must stay strong, we need to get more people engaged in working with the researchers, more people advocating, pushing for change. We must not and cannot let this slip and no matter how often we think we aren’t seeing change happen quick enough, each small little piece eventually adds up to big change. The biggest hurdle I see is that we need more people to step up, open up and be willing to help propel things forward. As we all know, this disease will progress at different rates for us all, so we need to be doing a continuous drive to encourage and mentor others, so that as many of us experience changes and may need to slow down or change how much we do there is plenty of others ready to step up. Advocating is not or in my opinion should not be about wanting to be the best known etc. it is about seeing change and making things better for all those who come after us. So it needs to be a selfless act of work. Doing it for recognition, or accolades, is the wrong reasons, if you receive those in and while doing your very best to make a difference that that is an honour not to be taken lightly or for granted or letting it go to your head.

i am while way working very hard not to let stress, override my well being, ensuring i am getting my walks and rest, having my little Phoebe with me is super important, for my well being and we are staying in an RV, so we have our own little space to retreat too. So really trying not to let my own wellness be impacted. My doctor is checking in on me, I was in the hospital just before this and he will be doing more with me on my return.

So I may not be writing as often at the moment getting to meetings and things are dependant on things that are changing day to day here, but I miss you all, please be well. Thank you for all your emails and messages.

Today I spent the day in the hospital, sent directly from the clinic, the ER expecting me, no waiting, ecg,s, blood work, imaging, and monitoring, Always the conversations around the complexity of my being. I must say that while they are having shortages, while you can feel the pressure cooker of the health care system, I was treated with kindness, caring, apologies for having to endure a system unable to provide adequate help, I did not feel that I received inadequate care. I felt as though everyone was doing all they could while taxed beyond measure.
I also had the opportunity to meet a nursing student, who in is final year, decided to take an opportunity to work for the summer, here learning the lab techs job, unfortunately for him, with my vascular system being what it is, given that there is a shortage of the small butterfly needles normally used to draw my blood, trying to find a vein was his first challenge, he called his senior person who was with him teaching for assistance, eventually after much coaxing a vein showed them where it was hiding, then trying to get it to give enough blood, anyways he was quite concerned, that he had caused me pain and distress, I reassured him he was just fine and thanked him for all he was doing to try to help . The challenge of getting things done with me stuck with him and later he came by to check on me as he went on break. We had a nice chat, he will do well as a nurse. so shortages are real, whether supplies or people, the shortages are very real. My doctors will decide next steps,. It hasn’t been easy accepting that issues that saw me in such bad condition last year are returning, but I am accepting of it, and remaining hopeful its a glitch. One thing I do know is that I try really hard to not end up in the hospital, but respecting doctors opinions, understanding they aren’t sending you there without great concern, I can’t expect them to give me the best of themselves if I am not willing to help them to that end, and I get the chance to keep going a wee bit longer. I feel changes, I adapt as I need too. I don’t take chances, when I need to I get the help and support from my doctors, taking chances, being stubborn, waiting to long, can cause me to hit a rapid decline, or causing much damage.

On the other side of thing, I will be doing a video recording, for my file and for my doctor who will have it so there can never be questions about my wishes. I want the maid program, I want everything put in place know so when the time comes, its easy. I know not everyone agrees with it, I don’t want to ever have to go into care, when I reach that stage, i want it to be the end. My choice, to go quietly, peacefully, better for me, better for the system, better for those that otherwise have to do all the work around keeping me in care, where I will be subjected to a life I have no interest in participating in. Dying with dignity is much more preferable. Its conversations I think and wish more people were comfortable with, death and dying, such a big part of life and living, yet one so many cower away from. So many people think well i know it will happen one day, and I have a will, and they think thats enough, but that is such a small part of it.
Its all the things that rattle around. I am resting, I am grateful,

I have been wanting to write but all my energy has been focused on fighting all the pain, and so many symptoms of which I have been free from since January. Which I have been grateful, oh so grateful for the last six months, after spending most of 2021 in bed, it was feeling good not to only have to fight the challenges and changes with the dementia, but fighting the pain caused by the thoracic issues, blood flow issues, lungs being impacted, blood flow, which means constant brain pain, coordination and vision impacted, and my angina on the rampage, along with all the fatigue.I was so hoping that when my system got the charge in January with unexpected results that it would be long lasting, but no one new for sure. Could this just be a glitch, could I get another up swing, I don’t know but the down turn is sorta hard to take. My brain malfunctioning more, is also causing havoc. But I am still smiling through the pain, laughing through all my fumbles and blunders. Like phoning someone today to apologizing for what I thought and was sure I had just hung up on her without saying goodbye or ending the conversation in any proper manner and I was feeling really bad about it only to find out I had not talked to her, and why would that become a very real thing, and a very upsetting thing, in the middle of the day. Well we know the answer, I know the answer, this is my dementia, this is my brain. These are the days you have to dig deep.

I have a lot of things sitting, emails half written, others unopened, only been able to manage two very small rides on my bike and walking is minimal, but I do what I can one minute and one day at a time. Its easy to get frustrated with myself , angry at myself, but this is all part of something that I do not have control over, I can only do the things I do to set myself up for success of living with the illness, and try to stay positive. Most importantly is to never stop being grateful, never stop finding joy in the moment and in the little things. So thats the update for now.

Yesterday I had the pleasure of being on a panel for the ICDW (International Consortium Dementia Wayfinding Summer Series, along with Drs. from Uk, Australia, US, and Canada along with fellow advocate and friend Debra Keay, from Ontario. It was an engaging, interesting two hours, the questions asked brought great things to the table.

Sitting in reflection two things really stood out to me, and I do believe they are connected. One of the things that came out and I have had discussions around this in recent weeks, is how do we the current day advocates encourage others living with dementia to get engaged and involved in research.

Firstly I think just like the stigma that surrounds Dementia, there is also a stigma around research, so many times I have heard, “I don’t want to get involved with people who just want to poke and prod me”. Somehow people equate research with being, injected, having to ingest, and be poked at. I guess that is an image we were fed, So many have not had the opportunity to see how much we can contribute to research in many different ways, how much it creates opportunities to meet others living with dementia, share, engage with the researchers, ( they are actually a lovable bunch, who truly do want to make things better for us). It helps me feel engaged, helps maintain my image of myself, helps maintain and build confidence in myself, feeling like I still have value and worth.

We as advocates need to put a focus on finding ways to get the message out to those living with Dementia. We are always asking researchers and others to help change the stigma around dementia but we also need to help change the stigma around research. We need each other, we need them doing the work they do so we can have better quality of life, they need us to do the important work for finding the things that will enable us to have that better quality of life, because without us they have no way to know and understand from our perspective’s what those things may be.

I am not looking for a cure, I am looking at all the things that can help me maintain a quality of life. They are helping me achieve that by engaging me in various ways on various projects.

We need to find ways to introduce others to the researchers and the researchers to those living with, only then can we get others living with dementia to lose the fear of becoming involved, and often the fear of their loved who also do not have a clear understanding of how much good can come for all by engaging.

I love the connections and friendships that have evolved through this work. I also believe if we truly want to do the best we can advocating then we need to be mentors and encourage others to shine, to contribute. Encouraging others making room for their voices to be heard is how the momentum grows.

Today I am in recovery mode, my brain is tired, lying low at home, enjoying the peacefulness of my little deck. I am thinking about all those in England at the Alzheimers Disease International Conference, wishing the event organizers and all those participating all much success. This is a time for them all to shine.

Time to close my eyes and have a nap as the leaves rustle in the light breeze.

Last night and the night before I had vivid dreams, in part in those dreams I watched myself write this blog , it was so vivid, on waking I wasn’t actually sure if somehow I had gotten up and actually wrote it, so had to check, but no I had only written it in my dream. So at 430 am I opened all my windows to hear the birds as they woke, made coffee and started to actually write this. By 6 am, my body was behaving strangely, I decided to lay down for a bit, but all day I have felt off, like my brain was turned off but my body was still moving along, a total disconnect. Not an out of body experience but an out of brain experience, that I truly have no idea how to explain it that it would or could make sense.

Any ways that isn’t what I started to write about but somehow where we ended up. What I was doing/ thinking in my sleep was about this week for me, tomorrow is my anniversary, June 7th, and even though I am a widow I still honour my anniversary.. My love for my husband has not lessened, I miss him, I miss his hand in mine, I miss our early morning coffees, and his kiss as he went out the door to work. I miss his presence, I miss that he was the one person who truly understood me, he choose to love me and he loved me completely. even though he has been gone a long time know, (2005), and that date comes at the end of the week June 12, and in between June 9th, is the day I lost my mom two years after my husband. She was and is my greatest inspiration. I loved her zest for life, I loved how she loved to laugh, I loved her gift of helping others. So maybe thats why my brain is disconnected today.

My thoughts around all this, is that still when someone loses someone we tell them, “time will heal”, it will get better and all kinds of other things. I guess on some level some of it may be true, but the reality is your heart breaks in ways that words don’t do justice, the fact is we learn to live with our broken hearts, we learn to rebuild and reinvent our life, nothing fills the gaps of the broken pieces. New things may come along and take up other space in our hearts and lives, they may be great, and we may be happy, but there will always be moments, or days, or something that will trigger, the memories, the missing of that missing person.

It feels good to carry that love with me, to honour and cherish them, I feel so full of gratitude that I got to share life with them. This isn’t a sad week for me, oh there always ends up being a tear or two, but more its a week full of emotions, memories a time to embrace all that was.

The saddest thing for me would or maybe will be if the time comes when I don’t have those memories, although I know I will still have the feelings of them, for now I will embrace this week.

Its funny every year I thought maybe this year it wont be this way at this time. Maybe this year I will just go through the week, without the dreams, the memories sneaking in, but I am actually glad when that doesn’t happen, I am happy to get another year to remember how good it felt to be so loved.

I am not sure any of this is what i started to write about at 430 this morning, but tonight at 830 thats where i am.

I have to Thank my sister in law for making sure I saw this, and it so good I had to share it. But what does that have to do with half in or half way out, well so much of our life is based on what we can and can’t control, how we manage that aspect of things in our life. A lot of it has to do with our perception of things, for example some people see June has halfway into the year while others see it has half way out till the end. We can’t control any part of it, only how we choose to see it, I choose to look at it as being fortunate that I’ve had a pretty decent go for this first half, especially compared to last year. I am grateful half way in and not one hospital stay, thats pretty unheard of for me , touch wood.

There is many things I can’t control, how much I forget now, understanding and knowing how much I have changed, all by things out of my control, but I can control how I feel about that. I can not control how or when my dementia and other related health issues will decide to ramp up or down, I am in control somewhat of managing how I react to those changes, at least for now, there will likely come a time when I may not be able to control that either, that is the nature of my dementia.

I can control my environment, ensuring as little drama and stress come into my world, very important with this illness. I can manage my nutrition, my exercise and my sleep, although my sleep patterns change and are not always within my control, it is monitored though, and when it changes making sure I adapt so that I can and do get enough rest are important.

I can not control how others view me, I can give them information, but ultimately, they are the only ones who can control how they view me or anyone else with dementia. We are always trying to give people information trying to stop the stigma around dementia, but ultimately, thats all we can do, give information, hope their hearts and minds are open to receiving it and reshaping how they think.

Thats what advocating is, giving, sharing information, so people can perhaps have a different understanding. It can be frustrating, often many advocates feel as though they are not being heard, that changes aren’t happening fast enough. But we cannot control that all we can do is give the information, the rest is not in our control.

I am thinking about this as we are approaching the start of Alzheimer Disease International conference in London. I had two abstracts accepted, one had to be done in person the other I had the option of in person or by pre recording. I choose to pull the in person one, I will keep it for another time, and I did a pre recording of the other, which they will play. Although I was saddened to think that I would not get to see some people I have not seen for a long time, and or have the opportunity to meet others face to face for the first time. I new that it was not the right time for me, something I could and do have control over, so I chose to forgo and perhaps will attend the next one in person. So knowing it was 100% my decision allowed me not to be sad, but to be proud of myself for doing what I knew to be right for me.

Sometimes when the world seems out of step as it does now, when life feels upside down, we need to remind ourselves to take a step back acknowledge all those things and how they are making us feel and then refocus on looking at the things that are within our control.

For me I am much happier when I look at things through that lens instead of being upset and angry about all the things that are out of my control.

What is in my control at the moment is being grateful, that sitting halfway out to another year ending and I am still maintaining being on my own, I have scaled back a lot of things, I live a super quiet life compared to my pre dementia life. I control how much and what I do each day, that is in my control. I have the ability to say yes or no, and can do it without guilt. Those are all things in my control. I am happy here, it becomes easier and easier to be happy here.

Ok so yesterday, a good laugh, so many times lately I have almost missed important events and presentations and meetings, and when among very patient people, who have helped me locate my notes for a presentation that my brain totally would not remember how to find, to ending up at the wrong place or the right place on the wrong day or time. Yesterday I had to attend a meeting which looking at the invite, I had no idea why or what I was supposed to be there for…. My brain is completely tossing things aside or out or filing them into the deeper recesses, where it may have locked access to me, luckily reminders from those there, of whom they were, referencing where I knew them from and what we were meeting for, I’ve been working with them for over two years on this project… we all had to laugh, me especially.

In an earlier meeting Ellen, (a true doll), who helps me do much talked about how this is happening so much lately. I can’t find a reason, I said I don’t know what’s wrong with me, more laughter, as I realized what I had just said followed with that’s ridiculous of course I know what’s wrong with me, it could be that it has something to do with the fact that so have Dementia….OMG…at least this disease affords me much laughter, because there is no point crying.

So what might be happening, just the dementia. Or my brain being tired and being zoomed out. In all likely hood, a combination and this brain 🧠 can only manage so much before it starts tossing stuff or filing it and sometimes it locks those filing cabinets only to open them down the road at some unexpected time. It can and does create chaos, it could create a lot of anxiety and stress if I worried about all the missteps it creates in my days. But instead I chose laughter, I don’t worry if I miss anything, it used to upset me terribly if I missed or was late, it no longer worries me, instead I feel like what’s wrong I manage to still do is good, if I miss something I will get caught up.

I also feel many many people whether with dementia or not are zoomed out, meeting out, and technology may have saved many of us during the pandemic but it is tiring, it creates another level of stress for us and our brains. There is some good articles on some of the things, like how our brains have to work harder to try to make and understand one’s body language. The back to back meetings and lack of true connection, it is connecting us but it does not feed our bodies what and brains need from the face to face connections. My fear with all of it is $$$$, profits etc will be the driving force to keep people zooming and not putting up the funds for all those face to face get togethers of the bygone days, and by that I mean prior to the pandemic. maybe we don’t need to be meeting face to face all the time, but perhaps for those working everyday, once a month, would suffice, for others like myself, meeting once to three times a year may be enough, but without those connections that are made, without that face to face interactions, I think the price paid will be in how our brains respond to the continual on line work. Time will tell.

The other part of me is wondering if it is just that it is time for me to simply put in more time to playing. Enjoying living, not that meetings aren’t good, not that advocating and research work isn’t great, it is and it provides purpose, but maybe this is my brains way of helping me balance it. Maybe walking away more often from the screen time on phones, i-pads, computers and remembering to live and breathe and play is equally or maybe even more important. Being fully alive, we often talk about living in the moment, but are we if we are always tied to a device. I don’t think thats how we were designed, at least I know I wasn’t. Playing at things that make me feel good, make me happy, make me feel at peace, that seems to be what I need right now. Perhaps there is many who need that, maybe I am fortunate that this ill working brain, gifts me with helping ensure these things happen, by tossing out what I may otherwise deem important. Somehow together this brain and I will continue to manage to do what I hope to do, it just may not look like the path most would take.

I have also been going through a lot of emotional ups and downs, a lot of things in the world to do that to us, again, it shouldn’t just be chocked up to being part of the dementia, it should also not automatically be chalked up to being depression, it is in fact normal reaction to very abnormal times. Innocent children and people being gunned down, war, along with the regular life stuff of family and friends, that can have an emotional impact. I, as well have the week of June the 5th through the 13th which always no matter how much I say it won’t, hits me like a freight train, too many emotional events all within a week, it never seems to get easier to navigate, it has however become easier to recognize and to just allow it to be a time to be whatever it needs to be. I am happy and content for the most part but I would say I was being remiss if I didn’t say that I do have those days and moments, where tears overtake me without warning, honouring the sensitive part of my being, dementia doesn’t change that, if anything I am more aware and feel more deeply. I write about these things because all to often everything about us is attributed to our diagnosis, when in fact much is and should be attributed to the fact that we are still alive so life will still effect us directly or indirectly. Sometimes I am not sure myself which it is, but by acknowledging how things are effecting me, how I am feeling and managing can go along way it having better days.

So I will just be at this time, however it looks each day, and I will laugh at the blunders, enjoy the moments of clarity, be grateful for all that is and pray for better more peaceful times for everyone.

The pictures are from yesterdays, stroll, these three were teasing me, posing and generally having fun, making the walk all the more enjoyable. Yes its the little things.

Dinner tonight, well actually every night my dinner is 2 cups of berries, today was a total plant based day, as was yesterday, trying to do more and more plant based, I’m not perfect at it but if so get it 50 to 60 % of the time I feel it’s a win, I also try to only eat between 2 and 7 pm I fast the rest of the time e, again not perfect but most days it works well for me.

I am always striving to do better, take better care of myself. I pay attention to my eating more and more in part because my eating changed so much, A friend was concerned that I wasn’t eating enough, so I started logging my eating, and because I rarely cook, it did and does seem like I am eating a-lot less, and in fact I am, but I am eating better, healthier food, so I am getting enough nutrition just differently.

I do have to monitor a lot of things that I’m the past I didn’t but because I can forget, because I often don’t remember hours or the day before, I appreciate having friends that will gently chat about the changes and things they see, a check in and check up so to speak. It’s easy for me to loose track of days and time and add in forgetting things, it’s not a stretch that forgetting things like eating is possible. And although it may seem that I would be upset by someone bringing those things up but quite the opposite actually, I smile, and think how nice that they care enough.

There is other things that I monitor in my bid to stay as well as possible, to stall and stave off the inevitable for as long as possible. Ensuring I make sure my sleep and rest are looked after, fresh air, quiet calm environments not over taxing or over stressing my system. Looking after and protecting my emotional and mental well being. It’s a tremendous amount of work, but without it, things would look much differently than they do at the moment. Yes there’s no cure, yes the complicating factors can wreck havoc, but all of those things would be so much worse if I didn’t do all I can for myself. My Motto when diagnosed was “I’m not done yet”, it is still my motto still how I feel, last year, I felt I was losing the fight, spending most of the time between hospitals and being bedridden at home, I never gave up and I never quit trying to help myself, it was a year that has made me really appreciate this year, and all that is in comparison. It was a year that as we head into the last half of this year, I try to be mindful, look for joy each and everyday.

Talking to my sister in law today, she commented on how very busy I always was, lunches, dinners, hosting get togethers and always off to somewhere. Today, I go days and days without leaving home, my trips to nature are my great adventures, that feed my heart, mind and and soul my plants create peaceful places and spaces for me. I will protect that. I will be mindful for as long as so can to be grateful for each of the good days.

Today has been a great brain day, I treasure those days so much, when I can manage to do something that I rarely try to tackle anymore. Accomplishing things that at one time were so easy, getting so excited when I actually have it turn out, almost makes one forget even for just a few minutes about the monster lurking in the background, my dementia monster, when he runs rampant not much happens except floating through the days, giving myself lots of self talk about how its ok not to be ok, its ok if today I just try to navigate enough to get by. Today was one of those days where the monster sleeps. I had a great sleep last night, in bed early and then up at five this morning feeling good, no brain fog, no lighting bolts flashing through my head. I stood out on my deck as I waited for my coffee to be ready and just breathed in the lovely spring air. Later I went for a little walk and enjoyed the spring rain falling softly, no need for a sweater or umbrella, just enjoyed the raindrops as they fell on me. Back home I decided to try tackling making one of my artisan crusty breads, I made a garlic and rosemary crusty loaf, then I made a pasta dish, to bake,( pheobe loves pasta), she was standing at my feet just waiting, she some how knows. So although I rarely and by rarely I mean only every couple months do I actually have a day where I can accomplish anything in the kitchen. I rarely turn the stove on, I use my little air fryer, and my toaster oven, and eat things that don’t require cooking. So today I feel like I had great purpose, a great sense of fulfillment, hopeful that in the days ahead I may have occasion where the monster will sleep and give me this brief reprieve where once again I can feel this way.

The reason I am sharing this is last night a dear friend of mine called me, he and I talked for well over an hour, it was lovely to just chat. One of the things we talked about is that it doesnt matter if you have dementia, some other illness, are just dealing with aging, if you are young or old we all want and need to feel a sense of hope, to feel as though we have a sense of purpose, it makes us feel fulfilled, and at times we may be more prone to do things than others. Sometimes the most and best we can do is be kind and gentle with ourselves. We should not place such expectations on ourselves or on others that we don’t allow ourselves or others the time they or we need for self care. Self care is in and if itself purposeful, its needed and necessary, we can’t always give of ourselves, of our time, in order to feel we have purpose, sometimes our only purpose should and needs to be the very thing we are always made to feel selfish. It is in fact the opposite, for when we encourage others and allow ourselves time and space for self care, we are able to give more completely and fully to things that bring us that sense of purpose and provides us hope. So perhaps we need to offer kindness and understanding when people have to step away for a time, perhaps we should encourage each other more to the self care end, without having to know the why’s or whats of someone needing to take that time, just cheering them on for doing whats right for them.

We also need to understand that we can and should find our sense of fulfillment in the simplest of things, liking managing to make a crusty bread, or finishing a project, or just being, our sense of fulFillment should not always have to come from how much we are “ doing”, or contributing, but rather letting it be in whatever we are doing and knowing that is enough.