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I love the message in the above picture, its one of those things when you first see it you stop and pause, and then you think wow this is so true and so relevant somehow to me for me at this time at this moment. Many of my changes are becoming increasingly more difficult to maneuver around, they are just there on display for anyone who cares enough to notice. More importantly I guess is I am aware and thats not an easy place to sit, aware yet unable to stop them from happening , it causes inner turmoil, causes me to go within more, its to hard to try to explain, its exhausting living in it. I believe if I were not on my own, it might be easy to give in and not fight so hard to stay independent, it might be easy to hand the reigns over, so being on my own in some ways with this illness is a blessing because it forces me to fight, it forces me to keep figureing out ways to keep goingalthough many many days I have sat and cried and wished I wasn’t doing this alone. I have not been attending many things have missed other things simply because I am struggling at this point. Not struggling in the sense that I need more care, but struggling in the sense, I can’t keep the whens and wheres in order, the days are spent adrift, even a few hours of activities or visiting or just stimulation in general is exhausting. I have been focusing on trying to make sure I am doing enough of things to be social interacting, so I don’t lose my social skills, and interaction and connection is so important, but over the last week or two I have learnt that being busy physically or mentally or both at the same time, I can only navigate for 3 or four hours. Its been a good and necessary step in accepting this new phase I have seemingly moved into. Some days I skip everything because I just feel like I am not following things, or conversations, that my ability to remain with is not there, so I just stay puttering around lost inside my self with my own thoughts, doing whatever is making me happy in the moment. I have and will continue to pop in and putter around at the flower store, on whatever day I feel its something I may want to do for an hour or two or whatever i feel up, its not a job, its the owners being happy to allow me come do whatever I like and then go on my way, it feeds my soul, I also know I am no longer able to work at what be traditional type jobs, a set number of hours or days and punch a clock, because me everything is so unpredictable for me. So I am deeply grateful that they allow me the opportunity to spend whatever time I want feeding my soul playing in the plants. I am amazed at how getting my hands in the dirt brings me such a sense of calm, a peacefulness and oh almost giddy, overcome with joy and excitement. Its been good to finally settle and accept this is where I am, coming to terms with this new phase, its been a challenging time, but I am still here, I am grateful. I will do what I feel I can manage on the days I feel I can, the rest of the time Ill just be happy right here doing something or nothing at all.
Its also made me understand that My advocating can ebb and flow too its ok to do it differently. It has made me realize that just like many many wonderful volunteers out there, in many different roles in our communities, they often feel like they have to keep going, keep giving of themselves when truth be told we should be doing more to help them do more fir themselves to remind them to live to not stop their dreams, that its ok to take time for themselves. Where would the world be without all those dedicated people, and we should not forget that all our advocacy work is volunteer.

In this collage below the first picture is a new work of art i created trying new mediums I have never worked with. its not finished Im looking foward to seeing the final piece. These are the types of things I am enjoying . So no matter where we may be on our journey may we offer ourselves the grace to do what our brains, hearts and souls are asking us to do. I hope with each decline that i will be able to maintain that for myself.

As we awake to the start of another month, April, wow, feels like we were just at the start of 2022 and somehow we are already heading into the fourth month of it. In many ways I want to slow the year down, yet in other ways I’d like to hurry through it, so that perhaps things like the war being raged by Russia could or would some be over. April is my birth month, a month that we usually start to see a lot of things growing, things starting to bloom, a month that somehow feels like a month filled with hope and promise, and i truly wish that we all can be filled with much hope and promise of better days ahead.

Yesterday, I found myself so angry, wondering when and if we will ever get to a place where care homes become actual care homes, instead of warehouses, where our elders are given the time, respect and cared for in ways that allowed them to actually and maintain there dignity. when it actually is about the person and not the tasks. I was upset about it all over again yesterday, because my neighbour came to ask for help, her husband is in care, he does not have dementia, he is of sound mind, but a stroke left him requiring 24 hour care, she is not able to provide it, so going into the care home was the only option. She was supposed to have a meeting regarding concerns around care and treatment he was and more wasn’t receiving. She wasn’t sure what to do, her husband felt that they should not do or say anything because the repercussions he would end ip bearing would likely be even worse than what he was already enduring. That is beyond words, beyond description, yet common place, people afraid to speak up, residents ( patients), left to bear the weight of a system that has brought about the acceptance of abuse and neglect. She told me that the week before a staff member had yelled at them both, because he needed to be toiletted, that they needed to learn and understand that they are too busy, to be being called for these things. The tasks, have taken priority over the care of the person. The bureaucracy, the business of care, has left out the most important element, the care. Care and Respect for our elders should not even have to be thought about, it should be something that is an integral part of everything we do everything we are, instead our elders have just become another throw a piece of society. Its so disgraceful. The people who are actually working within the system who do actual see the person, who do actually care, are so often left exhausted from trying to offer some form of quality of care, a little bit of dignity in a system that fights against it. The pandemic show cased how broken the system is, there is a continued promise of change, yet the horror stories keep coming, yet we still have people who have to be afraid to ask for the most basic care, which all creates further costs to a health care system that is crumbling. How did we get here, I’m not sure, but I sure hope we find a way to something better. I know for sure the MAID program is more and more appealing to many over being but into a system that neglect, and abuse are the norm, where paperwork, and other tasks trump actual time spend offering care, oh and how did it become a forgotten element that the time spend with someone is part of care. I know many will have many reasons why it is what it is, but if we get rid of all the bureaucracy, quit making things so complicated, strip it down to basics, lets start caring for people more than $$$$.

I borrowed this piece below from someone I know, she posted it today it was so fitting.

So I could write a book on this topic, but I will leave it there. so as we leave March behind and forge ahead into the hope that April brings, I find myself noticing more of my decline into my dementia, subtle changes and challenges, I am grateful that I have had another year and I am looking forward with hope. I hope April finds you all feeling hopeful of a brighter days ahead.

The pendulum swung too fast, good and miraculous from a medical stand point, a person couldn’t ask for anything better. The emotional and mental toll has been much different. I am happy, I feel good, I feel grateful every second. But I have lost my footing, I feel so completely different that I don’t where I sit within my on life….it is such an odd and very strange place. Its almost as though I’m having one of those out of body experiences where you are watching and looking at your life play out, as much as you try to get back into it, you can’t. I feel like I’m floundering, yet I am working hard on the things Im currently involved with but am not taking on anything new.

I don’t know who I am or what direction to take myself. Walking, and walking a lot every day, It feels so good, yet at times it feels like my body is in a race with itself. It is a surreal feeling, to be me and not me all at the same time, trying to get to know and understand this body and brain that are behaving very differently than in recent years.

There is blue print for me to follow no guidelines, when I got my diagnosis, I was told the expected time is 3 to 8 years life expectancy after diagnosis, told to get my affairs in order, but the recent events that have brought about such a unexpected outcome, that changed how my whole system is working, there are more unknowns than knowns, for myself for my health care team, but it means I am adrift. Someone can say well just enjoy it, a believe me I am trying not to take a second of it for granted, but I’m doing all the while trying to understand this very strange and unfamiliar vessel that houses me.

As I try to navigate this I hope everyone knows I am doing the best I can from this very different very new place.

It was a day of many things today, the weekends are always somehow strange, I am often not too sure of what to make of them anymore. They were far more important during my working times, times to catch up with people, catch up on things at home, relax, get ready for the coming week. Now I just get ready at the end of one day for the next, I don’t worry about the coming week. Yesterday, I re-homed a few items I no longer felt the need to keep, more and more the less I have in my space the happier I am, the easier I manage. Today, I attended our ( DAI) Sunday support group for people living alone, I haven’t been for awhile it was great to see everyone, then I walked for 1.5 hours, lots of fresh air. I made a big stir fry too have over the next few days. I watched the movie staring and directed by Billy Crystal, The movie is called ” Here Today”, I laughed, I cried, I watched it a second time. I highly recommend it if you are living with dementia, if someone you know lives with dementia, or you would like to understand it a little better. Very well done. Its available on Prime Video, I’m usually very critical of movies done about dementia but I related to his character very well.

I also realized that for as good as I am feeling, physically, I am still struggling with things like for example I had to look four times while watching the movie to see what it was called, as well not staying focused, many of those things we adjust to, those things are still happening, I was reminded by my dementia partner a number of times today, that the gift of feeling good, just means it gives me the ability and energy to do more, but is does not negate many of my dementia symptoms. I will say though without the constant pain, and fatigue, the rest of the symptoms are more of a nuisance than anything else. I don’t mean to down play them, its just after how difficult the last year has been they feel more manageable, and I know that I will have many hard days ahead. But for today, i want to relish in the good moments. The day will come when there won’t be the good days, there will be the nothingness days, so for today, it feels manageable.

I also thought a lot about the importance our animals play in our lives, in every ones lives but in particular to those with dementia. My Pheobe has helped me get through the last two years of this pandemic, so many of us they are life lines, they give unconditional love, they feel so many spaces that would otherwise feel very lonely. it makes me sad that so many people are not allowed to have their pets as they age or live in apartments or care homes. They improve lives so much, we owe them so much.

I hope the coming weeks is good for everyone

Its been 11 days since my world was turned upside down, and it should and is for the most part turned up side down in a good way. I feel better than I have felt in years, I literally feel 10 years younger. No pain, no fatigue, inflammation almost completely gone. Lung function improved, energy abounds walking hours each day. It’s a miracle, it’s a gift.

It came in the form of the much controversial vaccine, a high dose of Moderna. I have been tagged as one of the rare cases that they are seeing where it is actually changing how the immune system is working, helping various people, perhaps this will allow for more help for people with inflammatory illnesses, maybe something good to come form all of this covid. So I should be elated, jumping for joy, over the moon with happiness and excitement. On many levels I am, very grateful for sure, but I am also struggling to settle with this new found sense of wellness.

Trying to process it and what it means going forward is more difficult and troubling than I normally would encounter. In the past when having to deal with a change, like when given my dementia diagnosis, although, devastating, I was able to process and move into it and once I found support through DAI it became something that living with was doable. This however feels so foreign, almost like I’m living in someone else’s body suddenly, its so unfamiliar, there was no being somewhat prepared, as I was with my Dementia diagnosis, I new I was not ok, I new something was wrong, it was a matter of working through to get the diagnosis.

This is so opposite, going to bed, plagued by pain and fatigue, so much body inflammation it was visible to all, to wake up feeling vibrant, energized, full of life, able to breathe, walk with ease, no pain. It’s like questioning if this can be real, if this can be happening to me, for the first couple days I wondered if this was the up we see in people before the final decline to death.

More questions than answers, yet knowing the doctors have some answers but this is all new for them too. Will it last? Will it peak and then the decline back to or worse than before? Will this require a dose of this vaccine once a year of 6 months or ever?

I know I should just embrace it and be thrilled but after feeling so sick for so long, its hard to process the sudden change and by sudden I mean within 24 hours, if you are sick and slowly get better that is expected, this was totally not expected by anyone let alone myself. How is this going to impact my dementia? Another unknown, reduced inflammation should mean clearer days, should mean a slower process of the disease. But will that happen?

It has somehow changed me, I can’t explain it, I feel so very different than 2 weeks ago, it’s making decisions impossible. Never one to procrastinate, just make a decision and go with it, right or wrong, you can always change things later, that was me. know I can’t seem to make a decision over the simplest things, let alone the big ones. i’m way more emotional than I normally am.

I have decided the best course of action is to talk to the doctors some more and then just try to be kind to myself and give myself time to settle into this new found gift of life, and truly thats what it feels like, a gift of life, one day you’re facing the do I need to look at assisted living, knowing you are in the 8th year of a 3 to 8 year prognosis, to being handed new life. It’s a lot to process, it also comes with some feelings of quilt because you know so many who are struggling with their own illnesses. It’s just a lot, I sort of feel like I am stuck between these two very different worlds or places, and who and what I am know and how do I proceed? A confusing time.

I have the feeling that we may have a rough 5 or 6 weeks a head with the new covid variant but I also believe that by the end of February we will enter a time of endemic , and that things will start to improve. I don’t think our world will ever return to what it was but I don’t actually believe it should. we have so much that needs our attention. Our climate, our oceans, and lakes and streams, our wildlife. our health care systems, our seniors, our young, it seems everywhere we look there is a crisis looming, so we need to go forward, to do better, to be better at being humans. It feels like we’ve really fumbled that up.

I spend 17 hours in bed last night through till this morning, changing and challenging health issues has meant it’s been a super quiet holiday season for me, but the better part of the last couple years has been that way. It did make me think about how and what we will see for many with dementia through 2022.

It is well documented that people with dementia would be impacted do a greater degree than most by covid, and for a variety of reasons, isolation, lack of stimulation and engagement, weaker immune symptoms, which makes them more susceptible to many other illnesses. I have watched many of my global family of people living with dementia being effected by more serious health complications, declines in their overall well being. I can’t help but wonder as the world opens back up in whatever fashion that may be, the enormous toll taken on those with dementia. I do believe that everyone regardless of their health conditions, from the most fit and healthiest to people with various health concerns have been impacted, I am not meaning to take away from that. But as an Advocate about living with dementia and for others living with dementia, I think we will have to look at how we are advocating and I wonder will it bring changes in what we need advocating for. I do think we need to really pay close attention as we move forward and have honest conversations about the impacts on ourselves from our perspective and for those with partners from their perspectives as well.

I don’t know what 2022 has in store for me, but none of us really do, but whatever it is I will take it day by day. I hope all those living with Dementia remember to go a little easier on yourselves and for everyone regardless of if they live with dementia or not that this can and may be a year of healing, healing relationships, ( if they are meant to be healed, some are meant to just let be), healing of ourselves of our hearts and minds and souls, for I think often we forget to look inside and see what is hurting and spend some quality time healing our selves. that we can all find a place where we feel at peace from the inside out. That we can find a way to be a little gentler a little more patient and a little kinder as we make our way into this new world.

I am leaving you with a few pictures of my time between Christmas and New Years, when I felt well enough to be outside even for just a fews minutes, and snapped a few pictures. I hope as January unveils itself it showers you all with many blessings for the coming year.

My new fridge is arriving this today, its been on back order, so this morning I had to be up early to have the other one ready to go, it started leaking some kind of free-on, or antifreeze or whatever is in them these days a while ago, my landlord ordered a new one, but because of all the delays in getting things we didn’t know when it would get here, but today is the day. I am grateful that my landlord is so good about ensuring things are in proper running order and getting things fixed. I then had to get to my physiotherapy appointment, got back home to see a call from a Interior Health line, I answered to find my doctor on the other end, an unexpected call, right away he said he doesn’t like my vocal sounds at all, we talked about how we are waiting for some stuff from my specialist, then talked about the ongoing lung issues, fatigue and swallowing problems. He said he was at the hospital today, he is at the Cancer Clinic at the hospital on Thursdays as he is not only my GP but he is an oncologist as well, and spends Thursdays there, but he said he decided he needed to check on me, thus the unexpected call. He decided he was going to talk to the specialist while he is in the hospital about my swallowing and vocal issues and after he hung up I then had a call from his office saying he wants to see me in is office Saturday morning, not the usual day or time for a doctor to see patients. All of this has me feeling so grateful, I now how many people don’t have doctors, I know how many people struggle to see their doctors and get appointments so, when people wonder why I am always so unwilling to leave here, it is because I have such a good team of doctors and starting over could cause me a lot more harm, and the real possibility of ending up without care is something I am not willing to do at this point.

I am concerned about whats happening to my vocal abilities, and whats going on with my swallowing,I’ve thought about what will happen if I wake up when day and my vocal abilities are just gone, how will being on my own look then? A person cannot help but to think about all these things, or at least I can’t, maybe thats because I have learnt to try to be ready to adapt to new ways of managing things since my diagnosis. Regardless, I am very grateful that my doctor is so willing to do so much on my behalf, its something I hope never to take for granted. So no matter what I do try to find the positive in things and today all the positives were shining through, from my landlord to my doctors. I don’t and won’t sit and feel bad for myself as there is still far too much to enjoy and appreciate each and every day. I hope each of you can find something to be grateful for today.