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The neverending waiting Game

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For so so many living with Dementia it seems as though we are always waiting, waiting for the fog to lift, waiting for the most recent health event, to settle out, waiting to adapt and adjust to yet another new “normal”. It’s like playing pinball, ( I wonder does anyone remember those pinball machines?) you pull the leaver the ball starts bouncing here there everywhere, if you don’t use the flappers just right game over. Dementia is sorta like that, people see the outside everything looks fine but on the inside, things are lighting up, one event triggers other things to act up, inflammation causes, blood flow issues, causes organ issues from the heart through to the liver, eyesight, balance coordination issues, all the while you look just fine, but internally a full scale pinball game is going on.

Which brings me to my next bit, I am not sure if you all have what we call “ The Most” medical paper here, you end up with your preference of the most choices for your level of care, it is listed on your medical information so if you end up hospitalized it’s what they go by. Even with health care directives, which I have a very clear, concise one, my doctor has it, I also have a DNR, but in the event something happens in the middle of the night, while I’m in a different town, no one has access to that unless it’s on my person, let’s face it we don’t strap those things too us as we go about our day. Below is an overview of what the most system is and what each level means for you. We are updating mine after lengthy meeting with my doctor yesterday, it’s time to bring mine to the next level, reviews of these things are so often put off, yet everyone should have them, everyone should do them, not just if you have a terminal illness, these are things that should be talked about and done and reviewed, just like we renew insurance plans, we review our housing needs, yet our health care reviews are so often left for another day. Leaving these things to another day, because we think we have time, we don’t, whether we have health issues or not, life is fleeting, it is not guaranteed, it is not promised. For those of us living with any type of terminal or progressive illness, we know full well the clock is running, time is winding down. Maybe we should all be living as though today is the last, maybe it would afford us all to be more forgiving, compassionate and understanding.

I also have the package shown below which sits in plain site for paramedics, it’s another step to ensure my care is what I want. I can see people cringe, I can hear the I don’t want to have to see that everyday, but the truth is mine sits there has for years now, I don’t even notice it anymore, it has made a number of trips to the hospital, but it has also been missed a couple times, so doing my MOST, ensures things will happen my way for me.

My good friend Janet and I were talking about this very thing, after I had spend a long appointment with my doctor yesterday. My system is struggling, yup look fine on the outside, tired but fine, you know the fine that brings people to say “ you don’t look like you have dementia”, that kind of fine….but I am not my vascular disease is progressively worsening, yup invisible to all, but playing havoc inside, effecting everything, yup no cure, no treatment, I will be like most others with dementia, I will die of events other than the dementia itself. I know, I know, most don’t want to talk about it, read about or even think about it, but sometimes we need to think about the hard things, if these types of things became part of learning, understanding growing up we could safe much stress for those we leave behind. Death is an eventual given, how much time, when is the right time, know is always the right time, we can put off many things in life this is not one of the things that we should think “I’ll get to it”, put it at the top of your priority list, then relax, if you have just given all those who care about you a gift, that hopefully they never have to realize for many years. For people like myself, who live alone, who is aware that I will be left at the mercy of the system, it is even more imperative that I have done all I can, to ensure I don’t end up not being able to speak for myself, and at the mercy of the system, ending up being kept alive with zero quality of life. I don’t care what happens to any of my things, but I do care what happens to me. So if you look at the chart, there is two areas circled the lower is sort of the standard that most have, however, I am a M3, the other circled area. There is also explicit to that, orders on the form signed by both my doctor and myself. I can rest easy knowing, that when my system goes into crisis, what will happen, and that if and whoever may be still here, it will be a simple phone call from my doctor that I am gone. I know I have talked to this subject maybe a little lighter in previous blogs, this one more blunt, due to my ever progressing complicated health challenges. My doctor told me he felt I was being wise. Most don’t understand that health care directives are great, but they are not accessible at the hospital, so until someone can bring it in or has authority to speak for you, you could end up having things done you don’t want.

No I do not have a death wish, I am not even close to being done or accomplishing what I want to, but I ultimately don’t get to decide when my time is up, but in the meantime, I can focus on doing all I can to live as fully as I can, to do all I can to minimize the effects of my dementia, all the rest is taken care of. I am grateful that I have a team of doctors who work so hard, during a time when our medical system is in crisis, too ensure I have the best quality of life for as long as possible and that they will ensure the end is also as best it can be. I have much to be grateful for. I hope this blog is not upsetting, but instead prompts you all to give deep thoughts to what it is you truly want should something happen, to encourage you to have the conversations with your doctors, make sure it is clear on how things work where you live, get things in place with them, get them to help you have conversations with your loved ones if you are not able to do it on your own.

By WWW.Chrissy's Journey.com

I am an advocate for people with dementia in Canada and globally, having been diagnosed with younger onset dementia myself a few years ago.

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