Category: Silver Linings

Here we are with another month behind us, and although we are in a continued state of lock down due to the Covid 19 pandemic, time is moving quickly. Today, I am writing as I sit waiting until its time for me to leave for the hospital for my day surgery, its exploratory. I almost cancelled after our local hospital had a covid outbreak announced, but after conferring with Doctor, Have decided to go ahead, this exploratory surgery was elevated from urgent to “Rapid Response Needed”, which I wasn’t aware of, this all comes out of my last hospital stay last month, so given all that information, I decided that my I was going to be at risks one way or the other and decided that they could do their best to protect me from covid, but they could to little if they were unable to do this exploratory surgery.

Living alone means you have to be very proactive, so that when I come home I have everything to take care of myself, so meals prepped, water, ginger ale etc at my bedside, also a bag with my dogs things should she need to be picked up, and a bag packed that could be dropped off at the hospital should they decided to keep me, which is not to far a stretch for me. It means having things in place for people to phone every couple hours to check on you. They prefer you have someone with you for 24 to 48 hours, but for some of us those are luxuries that aren’t ours. It could and likely does cause some a lot of stress and anxiety but I am so used to having to put things into place that it actually causes me more stress to think of someone having to be here to “take care of me”. I don’t like to cause anyone inconvenience and even if they don’t mind it truly is a pain for someone. So I try to set myself up for success. It also makes me aware that the day is coming I will require more and more help.

It also just as the month as changed to another, that things in my life are going to be changing and I am not sure how, but I feel that change is upon me. I know I can’t try to figure out the how’s or why’s, I just have to let things unfold as they are meant to. Will it mean changes on the personal level, changes in my advocacy work, changes in my health status, not sure, but letting it unfold without trying to interfere with the process I am sure will bring about the best outcomes. It seems when trying to control the how’s or what’s it usually brings about negative results. Letting the universe guide me in all ways is much more appealing. I truly do try to live my life know but the reason, season, lifetime theory, so maybe we are moving into a new season that requires changes to take place. Seasons of our lives, ebbing and flowing, changing and adapting. Dementia has helped me immensely with being able to do this, instead of trying to control it all. I have learnt through my journey with Dementia, I have very little if any control. So here’s to a new month, the month of my birth, a month to celebrate all that has been and all the will be. Enjoy your April 1st. and watch for those April Fools jokes.

Well hello whoever you are, where ever you are, I am here in British Columbia Canada. Yesterday, we were sent careening back into lock downs, restaurants only allowed take out service, all indoor activities stopped again, our biggest ski resort ordered closed. It’s not full lock down, but close, travel within BC restricted to essential travel for work or medical care only. People are ordered to work from home in every situation it’s possible.
You can still socialize out doors in a small group 10 or less as long as it’s always the same 10 and you are all social distanced ( that’s 6 feet here.
I am not upset by this lock down I could see it coming, I only wish instead of trying to appease by creating what they see has some sort of balance for people, they would shut everyone and everything down for a month, go on a ramped up vaccination campaign, and be done. It feels like we are playing with fire, testing and teasing the virus to see how far we can let things go until it takes such a hold that the results devastate us. I just continue to hibernate in order to try my very best to look after myself.
They have know created a list for compromised people, but the list is not for all who have compromising illnesses, and they decide who makes the list in order to get vaccinated know, versus being in the regular rollout order.
Dementia of course did not make their list, even though they know that people with dementia are likely to have more devastating outcomes than others. So I wonder is this because all the other illnesses have some sort of treatment options, or cure ability, so they get preference?
So I have formulated in my mind that this will be ongoing and that I should prepare to continue to live this way until at least the fall. Living alone means an even longer time of not seeing my loved ones, as they all live in other areas, so it will be continued zooms, video calls etc for the foreseeable future. I wonder, will I get the opportunity to get to another conference and see all those that I’ve met along the way with my advocating, and involvement with different organizations and research groups? Will my health hold, will I be able to keep the decline of my dementia at a dull roar until then? Or will the decline continue on the level it has over the last six months? Time will tell, in the meantime I will. continue to work with Dementia Alliance International, Dementia Advocacy Canada, as well as things like our Vernon Seniors Action Network, Agewell, TREC, Canage, Public Health Agency of Canada, and a few others. All of these things will continue to provide purpose to my life, help fill the gaps in the isolation by keeping me engaged, and socially active even if only via zoom. I will also continue to walk, and ride my bike, getting outdoors as much as possible, nature is so important the sights the sounds the smells, it feeds my soul, keeps me calm and peaceful. I bought a little gas BBQ for going on picnics and drives out into the woods with my little dog, this spring/ summer. I am if nothing else determined to be one of the survivors of this pandemic, if not it won’t be for lack of trying.
They say most of us living with Dementia die from something other than our dementia, I’m just determined that whatever it’s going to be for me it won’t be this Covid 19. When I think about these things I think about Tim McGraws sing “ Live Like You Were Dying”, that I think is exactly what I should and do try to do.

Today was a busy day, meetings, hospital appointments, and our World Works Against Dementia Event for Dementia Alliance International. I was so honoured to be part of the WRAD event. Ok truly I wasn’t a big part of it, I hosted it, and even then it was not without flaws and I do not and admittedly so have any talents like the people we saw today. I am always in awe of those who can sing, dance, or do a variety of other skills. It was so wonderful to have collaborations between a songwriter in Scotland, James McKillop and a musician in Canada, Kevin Bader, who collaborated on a song James had written and Kevin set the lyrics and performed the song. It touched many hearts. If only we could see this kind of collaboration between organizations my oh my what could be done. We also saw families perform, grandchildren perform, members of support groups, and day programs, and lovely tributes written and performed by another of our members, truly an International event, from Singapore to Scotland to New Zealand and Canada. I enjoy helping to make those events possible, to see the joy and smiles it brings to all who take part. It does take a lot of time and energy to reach out to people to get their involvement but every single moment is worth it when you see the you it brings others. This event was one of the ways that kindness and a willingness of others helps to make things better for people both with and without Dementia made such a huge difference.

The other thing that happened today, brought me to tears, actually more than once. I have over the course of time since my diagnosis, been touched many times by the kindness of people, sometimes by family and friends others times by complete strangers, who have come to my aid when I have needed it. There is not a day that I don’t think about all the ways I have been touched by the kindness of others. Today was another day of being completely overtaken by emotions as another act of kindness was bestowed on me.

Meet Sally, Sally is coming home on Friday, she is my new electric bike, this has come through the complete kindness of others or an organization, I am not even sure which, it has been in the works for quite some time apparently, but they wish to remain anonymous. A lot of tears today over this. With all my health challenges over the last year it will allow me more freedom, it will allow me to get the exercise my body so badly needs for blood flow, but cannot get in most of the traditional ways, if I over exert my system, it can’t manage, this allows me the exercise with pedal assist so the benefits with no strain on my system. I cannot even begin to put into words what I am feeling, beyond grateful, beyond thankful, beyond, beyond, beyond, it just defies words. Again the kindness we give and we receive are truly the things that do so much and yet words fail to express what those acts of kindness truly do.

I am emotional today, I have witnessed so much kindness today, not only for myself but I have witnessed what they kindness of others has done for others today through our WRAD event. I feel exhausted from crying tears of happiness. Emotionally tired, but tired in a good way, something that feels so good instead of the tiredness I so often feel, and as i am writing this I have a knock at my door, someone in the building dropping off lemon meringue tarts for me, yet another act of kindness. For all that we see wrong in the world, days like today remind us about all that is right and that if we all do whatever we can big or small, it can make such a difference.

So Thank you to all those who have touched my life in so many ways, over the years, you and your kind acts are what keep me on the road to trying to make a difference in others lives, and none of your acts of kindness are forgotten, I may forget a lot of things, I may forget the actual thing, but I will never forget the feeling that was bestowed on my by your kindness, in which ever way you showed it.

This Morning I woke for the first time in a number of weeks, feeling good both cognitively and physically, its not often both happen at the same time anymore. My physical impacts my cognitive and vice versa, so when you wake up and two hours later you have managed to be showered dressed, make up on for the first time in recent memory, it’s an incredible feeling.

The changing of our time did and has messed me up but because I was feeling ( actually on days like today I feel like a genius and super woman all at once). good, I was able to navigate through it with a greater ease and less frustrations. Considering earlier in the week I had no been able to manage simple tasks, even trying to navigate my computer was a no go. So today being able to reset my clock without having to call in help to do it feels amazing. seems simple right, well at one time those things were done without much thought, most days know they take a lot of brain power, often leading to frustrations and its hard to fight of the feelings of inadequacies that come with the loss and difficulties to do once simple tasks.

When you lose your confidence for example I was once very good at spelling, I no longer am because words no longer lo0k familiar, in fact earlier in this paragraph I had to ask Siri to spell a word that I thought was for sure wrong, only to find I actually did have it right, but not trusting myself with the loss of abilities is another aspect that one must learn to work with. Loss of abilities, Loss of Confidence, Loss of friendships and family, Loss of careers and jobs, the list of losses starts to overtake at times feeling insurmountable and unbearable.

But then there are the gains, renewed hope and purpose, new opportunities ( although one must be brave enough to be willing to step into those opportunities), renewed and regained feelings of self worth, learning that you still have much to contribute its just in new ways, learning new ways to tackle old skills that now create frustrations, new ways of doing the old things is just another of the amazing and often over looked abilities of those living with dementia. Everyone always focuses on the things we are no longer able to do or struggle to do instead of cheering for all the things we can and are still doing. Maybe it doesn’t look like it used to, but in fact it is good for everyone dementia or not to learn new skills, try new things, it creates new pathways in our brains, so we should be celebrating all the ways we contribute all the new ways of doing things. I may not be able to put together a presentation as I once could, but I can stand up and give a speech know which I could not do before ( likely mostly out of fear). I loo longer have the fear, I speak my truth, if you don’t like it you don’t have to listen or read it, but I most certainly can read and speak it. I have a lot ( in fact I very seldom even try to read anymore), I can’t retain it, but I can write, two different functions of the brain. It makes it very challenging to try to read documents even personal papers, so often I just don’t, I try to do everything I can to make things less stressful for myself, creating less brain fatigue, which then allows me the ability to focus more on the important things, those being things I enjoy participating in, things like living and enjoying my days instead of spending them in a heap of tears and frustrations.

Yes the tides of my dementia are changing but I have learnt and continue to learn to change with them. So whether the changing of the season or the changing of the tides, changes happen to us all, some of us are just handed the piece that will force us to adapt to change in different ways than others, for me it was my dementia diagnosis.

I do get really tired sometimes of feeling like I need to prove myself to others around being diagnosed, the “you don’t look like you have Dementia”, and “you seem to be pretty good to me”, by people who only see you when you are operating at your best and highest level, ( in other words your good days), or only spend maybe a half and hour to an hour every few months with you and then make an assumption, based on that short interlude. Although I must say I actually no longer care what others think, except for the fact that it would be nice if they were educated enough ( and not just think they are), to truly understand how damaging those kinds of judgments are, and that in fact that is the very thing that keeps so many people behind closed doors not wanting to or feeling like they must hide their diagnosis from people. We in fact don’t do that to others if they have MS or Cancer or Kidney Disease or a host of other illnesses, so we should not make those judgements on people living with Dementia.

The other piece that I struggle with a lot is that so much of the populations still do not understand that Alzheimers is one of the many types of dementia, so often people think they are not at all connected, yes the effects are different for each type of dementia ( Alzheimer being one), often for as much as they are different they have similarities, and early onset within any of the many types of dementia presents in its own ways. Using my voice and I encourage anyone with a loved one living with Dementia to help them use their voice, with writing with speaking, blogging, awareness is the key.

30 Years of Advocating has seen little change but it is coming and by helping people use their voices, you will help give them renewed hope, purpose, and ways to continue to have a meaningful life.

The last few days I have been asked on several occasions by others living with Dementia why if we have been advocating for 3o years has there been such a reluctance and the lack of real tangible change. It’s a hard question to answer, I’m not sure there is just one answer, there is as many layers to that question as there is to dementia.
it is surprising that after all these years people somehow still seem to think that Alzheimer’s and dementia are not connected, when in fact Alzheimer’s is just one of many types of dementia, it is just the most well known, in part due to the fabulous marketing done by many who make a lot of money off of it. Yes that’s right, money comes into the picture as one of the biggest reasons it has and is taking so long, there is money in having people be fearful of Alzheimer’s and dementia, from the Organizations that have become big businesses to the pharmaceutical companies, money is the driving force, not the actual well-being of the people living with dementia. If you start peeling back the sugar coated guise that most of them operate under you can clearly see, this is about business and money not actually the people living with the illness, other than that they use them to keep brining in the money. I know it sounds harsh, but it is a hard reality and one to which none of them will own up to.
On the other hand, it is not all doom and gloom for those living with dementia, for together the voices of people living with dementia have become louder each year. Partly I think due to the fact that people are being diagnosed earlier, and younger, so it becomes increasingly hard to keep the old image of what dementia looks like alive. As people are being diagnosed at younger ages, they are standing up using their voices, campaigning, advocating, demanding a place at all tables where Dementia is. From government bodies, to local groups, research, to medical, people are demanding change.
Although for many the change is not happening fast enough, tangible results are slow to see.
Yesterday, someone with dementia, who lives on the other side of the country from me said, please don’t stop using your voice, they said they can use their voice within their community but they no longer have their ability to use their voice at a national or global level. I said if everyone uses their voice within their communities, pretty soon the voices are so loud that they become part of the voices at all levels that no longer can be ignored.

Ignoring, or trying to silence the voices of those living with dementia because people believe that because their is no cure there is no point, or no hope, so why bother is as old a view as the disease itself. People once felt that way about cancer, about MS, and a multitude of other illnesses. It is true that there will likely never be a “cure” for dementia just by the nature of the disease, it is complex, but people can and do live for 25 or more years with the illness. So should we not be looking at care and quality of life instead of cure, just as people “live with Diabetes “, shouldn’t we teach people how to “ live with Dementia”. When people are diagnosed with Kidney disease, diabetes, heart conditions, cancer and others they are provide the “ tool kit”, to help them live with and manage their disease so they can live as fully as possible. They are offered continued resources to help them maintain and live as fully as possible. Is it not time ( it’s actually past time) that those living with dementia are offered the same. Our voices need to keep pushing for those types of changes. Many of us are more interested in having the resources to help us live fully, more so than we are in the cure, largely in part because we understand that “ a cure”, is largely unattainable. That does not mean that there are not and may not be the ability to have treatments and medications that can help with many of the symptoms of dementia, but there can any will never be “a cure” that can or will fit or work on all types of dementia, fie example my vascular dementia would need a different type of “cure”, than someone with the Alzheimer’s type of dementia. That doesn’t mean there can’t be treatments and programs that can help both.
Some of my conversations of late around all of this as also had conversations about how much more or for how much longer I and many others can continue to use our voices. We are tired, those before us grew tired and weary, when is time to say I’ve done what I can, time for others to carry the torch. Some can manage for years others not as long, all have an impact, but because all have dementia, all with varying types, all progress differently. So when is the right time to say, I’m handing the advocating over to others know, know I’m simply going to finish out my time living as fully as I can? It’s hard to walk away, we so desperately want to see that change happen, we want to feel as though somehow we have made a difference. It’s a question I have been asking myself a lot lately. 6.5 years into what I was told was a 3 to 8 year life expectancy after diagnosis, and I find myself facing some hard truths. My health is declining, much more than I like to admit,( that’s the warrior in me), but after this last hospital stay, after March and April’s round of Drs and Specialists, and conversations with them, the reality is that my “ good” runs, where I feel good and manage well, I was getting months at a time, and my bad runs, the time in between is becoming smaller. I can do less than before. Yes this was to be expected, yes they did say 3 to 8, yet somehow I felt I could maintain much better for much longer, in part because I have worked so hard to do so, as they say if I hadn’t I would not be here today. But somehow I still struggle with thinking I have and am much more able than is the reality. I have actually just had a new volunteer start, her name is Angie, and I am thrilled to have her coming to help me. There is a huge sense of relief that comes when you admit and settle into and accept that you need some help. I feel like having her come is such a gift to help me continue to do the things I enjoy and that keep me feeling and living a purposeful and positive life.
There will be many more decisions and conversations in the next month or so, living with dementia is always about facing new normals and it would be nice if in fact that we were finally given the tool kits that enabled us to do just that.

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