Author: WWW.Chrissy's Journey.com

Earlier this week I was interviewed by someone working on a research project, the conversation was lively. She told me they had researched me before asking if I would agree to be interviewed. I’m not sure where or how they researched on me, but I hope it was an interesting search.

We talked about many of the issues and challenges faced by those of us with Dementia and trying to advocate and work to help bring much-needed change. We talked about how many organizations want the people living with to help them campaign, by being the chosen poster person, or by sharing their stories, for which most are happy to do, however, at the same time none of those funds become accessible to the people speaking at conferences, etc. the money instead is used for funding their paid employees to attend, and to pay for offices and business expenditures and wages, she was and said they were aware that this common practice happens. We spoke about the differences different organizations do and mostly do well, but that the one they don’t do is work together on the things that matter and could help those of us actually living with the illness.

We talked about the different things they could do, like sit collectively at the table with people living with dementia, look at the strength and weaknesses of each organization, help each other focus on the strong points, and working collaboratively it would and could then have a positive effect on those of us living with, instead of it being made to look like they are making a difference that in reality, they are not.

As the conversation proceeded and I was asked many more questions by the end she asked me if they were to focus on one thing that would be my number one thing, because we had covered a tremendous list of things and work that needs to be done. I think my list shocked her.

After taking a few minutes to think about it, my response was that if having to choose one for them to work on it would be to change the focus from cure to care, stop trying to find drugs to cure, we know that is likely not possible given all the complex bits of dementia, focus on creating drugs that can help alleviate symptoms, allowing for a better quality of life, start by helping change how a diagnosis is handed out, that medical should cover a complete team of care professionals, Occupational Therapists, ( most jobs to duty to accommodate for any other illness except Dementia), Rehabilitation Therapists, Physiotherapists, Nutrionalists, Life Coaches. Give us the tools and the team to continue to live and work, to have our best life while living with a terminal illness, Stop sending people home feeling hopeless, lost, and alone, in all my advocating, speaking and talking with people living with Dementia, not once have I heard a story of where they were given anything more than being told to go home and get ready to die, so lets change that, let’s start there.

Is it time that we start making our list of priorities visible, we so often feel we are through our advocating and speaking, but maybe we need to a top ten list, and podcast it so far and wide, it can’t be overlooked.

Sometimes, no oftentimes, when I am feeling unsteady in my being when my illness is causing me to feel unsure of myself, who am I know? Who will I be? When the demons try to find there way in to fill me with doubt, to shatter what confidence I have been able to regain, Due to the fact that when diagnosed your confidence in yourself and your abilities are shattered, rebuilding it is challenging and difficult. Especially as we endure loss after loss.

But we can rebuild our confidence and our lives, against all odds, against what the world says we should be doing and how we should look if we have dementia.

The world saw Dementia as an old person disease, so people were generally not diagnosed until their late 60’s to mid-’70s and beyond really. Fast forward 20 or 30 years and here we are its till the image people have, except many of us are diagnosed so much younger, in our 30’s and 40’s, 50’s and 60’s, in the prime of our lives really. We are busy trying to work towards that wonderful world of retirement that we hear about. WAIT .. what was that, retirement for many can be lovely but for a great many, it brings about a lot of health challenges and actually sees a lot of people struggle with the whole aging thing, so what then have we spent the prime of our lives working for if that’s what awaits us, I’ve had many recent conversations with people who say we should actually be living in our lives in reverse, traveling, enjoying life until 40 or 45, and then settling into work and contributing more fully to society as we age.

I believe there is some truth to that, but that we should always be trying to contribute to society to the betterment of all, no matter the stage of life we are at.

For those of us diagnosed with Early-onset Dementia, our plans for retirement all those things we were working towards stops, its a sudden slam on the brakes stop. When you’re told to go home get your affairs in order, your world stops, your confidence disappears.

I think I lived in a sort of fog, not the brain fog of my dementia, but a different fog, I likely didn’t start to emerge from that for 6 months to a year at least if no longer. You go through the days, the motions, but suddenly you have no footing, no one tells you how to continue to live, they only tell you to get ready to die, except you know within yourself you still have living to do, you still have life in you, the two things collide, sending you reeling, no idea what or how you are supposed to move on to the next day, let alone the next month or year. Yes, its true those of us living with dementia are living with a terminal illness and we all know all to well that at any given day, the illness can abruptly decide today’s the day it’s going to send us reeling to the end gate. But what do we do until then, no one helps us with that, a great deal of focus in health care needs to be shifted in that direction.

So eventually I learned, through my DAI family, I learned, how to help myself, I slowly regained my confidence. I was encouraged to keep doing things I liked, both old and new, to keep learning. One of the things I really learned was that I could find Joy, laughter again, maybe not in the ways I had before, and maybe not in ways that most could understand, but I definitely could find a lot of joy in my life. I also became aware of my own power, the power to change my days, my moods, my thoughts, my outlook. I became a Dementia Warrior.

So recently I’ve had many things to celebrate, like my book “For this, I am Grateful” being published by Austin Macauley Publishers, For the opportunity it has created to allow me to meet many incredible people and to do what I have always wanted to do since being diagnosed and that was to make a difference for others.

That doesn’t,t mean I still don’t have the down days the sad days, the days when I question everything, the days when I really feel the losses, the loss of friendships, of a planned life that will never be. But I have taught myself to do self-care, which is so important because it will take me back to the joy, to the gratitude. For me heading out into nature, like I did yesterday, totally unplugged, grabbed a friend who if he’s not busy is always willing to head out there, packed my cooler, and my little dog, 110 Kilometers down dirt roads, finding lakes, streams, rivers, peacefulness, stopping for a picnic, stopping to explore and hike, 110 kilometers, through the dirt and the mud, returning refreshed, regrounded. So even though I am struggling more these days, I am remembering to be grateful, to find the joy, not to let the often dark and scary parts of Dementia overtake me.

I had a good laugh late last night as I was thinking about the grand day ( pictured here), thinking at some point I am likely to be one of those people who has everyone’s alerts going off because I’ve gone out of my established area, I can hear them saying ” oh for heaven’s sake where is she going now,” and “she’s likely headed somewhere she can sit with her feet in the water,” and “no she doesn’t think she’s lost shes just out exploring,” “don’t know what we’re going to do with her”. I can see that I will be that problem, and as I’m getting ready to drift off to sleep I think to myself with a smile on my face “oh how grand that will be”.

Sometimes you question whether all the advocating you are doing is helping? Are you actually making a difference? Are we somehow making our illness look easy? This is something many of us have been accused of. Is that why many, even those who know us question our diaganosis and at times actually state that they don’t believe we have it? Is that because we work so hard and fight so hard for every good day? Would it be more benificial if we all gave in and said ok, we will stop then, let the illness ravage us so that the disbelievers, can than stop because they will see us wallowing and sinking into the black hole that so many struggle to find their way out of. It’s something I’ve wrestled with.

But then something happens and makes me remember and realize why fighting and standing up using our voices, even though it takes such a toll on us, something happens and we know without a doubt we are doing exactly what we are meant to be doing.

Explaining this is difficult so first I have to go back a bit, many releationships not just of my own, but for most of us living with dementia have changed or disappeared. Some will tell you why, some will say they can’t bear to see you disappear before them and they want to remember you as you have always been. You see in marriages we stick by our partners through the rough and difficult times, or usually, many with Dementia find they are left to cope on their own.But in other relationships withing family units and within friendships those same rules don’t apply. Sad really when you get down to it. Sometimes I left to feel like maybe having to be on my own has somehow been a blessing in disquise because it has made me have to fight hard to stay standing because know ones coming to rescue me, knows there on a day to day basis to rely on, where otheres expect to rely on those in their immediate circle. Doesn’t mean I like or want to do this walk alone, just makes me fight harder/ Maybe? Or maybe those with others close by fight harder becasue they have a reason to not sure, I feel greatly mixed about that.

Others want you to believe the relationship has not changed when in fact, most of us living with dementia can go back to the time it did change, we may not remember all the pertinet events that lead to the change but remember the feeling and the knowing the moment it did. And others may think we don’t know but we do.

We are then left with the undaunting chore of trying to process the loss, while living with an illness that creates enough loss without adding those losses to it, but invetiably it is in fact what happens.

So we must decide to either crumble or we decide to let that decison be the person making it be theirs alone. Its called accepting and not having an expectation, when in fact if you were living with any other type of terminal illness you would be expected to have expectations of others. So we try our best to focus on what I call “the Wins”, focus on doing what we can to help others and have a positive impact on those living with the illness.

Sometimes you worry that people think you are arrogant or full of yourself because of the work you do so this of course causes us to sometimes question it all, and yet all you have ever really wanted is to make a difference for others so people don’t have to feel the way you felt when you were diagnosed. And then that thing happens that thing that says, to those who want to disbelief its ok, to those who need to walk away or have a reduced relationship its ok, we make it ok for others instead of them making it ok for us, but then that thing happens yup time to tell you what that is.

Then you are talking with someone who reminds you of whats really important so I am going to quote from my conversation last night when discussing how it feels at times ” Those who feel you are arrogant are not seeing clearly. You are anything but Arrogant so don’t listen because I would suggest those individuals are feeling some jealousy verses loads of joy for you. give your energy only to the positive people and the negative ones will step aside.”

I so appreciated and needed those words, which then carried me into today to meet with a lady who herself has been diagnosed, we sat at the park, she told me reading my book and meeting me saved her life and changed everything for her. We talked for hours I gave her literature on DAI, so she could get more support, it was uplifting for me and again that reminder why I must continue to fight to stay well living with my dementia, regardless of what others think, or somehow believe I should be. I have definetly changed, I am no longer who I was, I struggle for more than most see, but thats because they only see the parts that make it look easy they don’t see the hours and days, it takes and the exhaustion after, holding yourself upright for hours to manage part of a day. Coming back home I messaged this lady to let her know I enjoyed our visit today. The response I got again verifies to all who question if they should keep doing the advocating and speaking out for others, how truly important it is. ” Thank you so much, I’m so excited to know there are things I can do—People I can talk to__ you have opened up a whole new world to me and I am so grateful. Plus you are kind of a cool lady!

These are those things that happen, somehow when we need it most.. to be reminded, that we should be proud of the work we do and we should ‘nt let the nay sayers stop us from reaching out and helping others and making a difference in the way we can. We may not be able to do alot of things we once did, we may not do things the way we once did, but we do and should continue in ways that are meaningful to us and contributes to us having meaning and purpose in our lives again, and we should never ever apologize for it.