(EOAD does crazy things to you. Things that are so out of your  ” normal ” it leaves you gobsmacked.)

It’s been a long 2 additional weeks with this bug that I have. I’ve never dealt with this type of thing before and it’s caused havock in my life.

I’ve missed meetings, slept more than usual, just been feeling out of sorts.  I am hopeful I’m on the mend. 

I’ve written numerous thoughts, bunches of things, random , some connected.  Here is a giant group of things seemingly unconnected,  completely intertwined.  ( Oh my brain lol)

Visual clues are big for me. Huge!

Example:. I have Google calendar reminders to take my pill, Google Mini voice daily reminders; I have daily alarms set that go off at 9am and another that goes off at 10am.  My daughter installed an app on my phone that reminds me daily also.

You’d think that would be enough!  Hahaha! Nope.

I now have to leave my pill bottles on my dresser, seeing them helps,  new habit, coping skills.  ( New habits can be hard even with a healthy brain ). 

Sometimes the fact that the app  my daughter installed, the fact that unless I actually press ” done” , the reminder remains in my notifications on my phone it’s helpful.  ( Please don’t press done till after you take them  Janet cause you are going to need the blister packages soon)  But still, there is another challenge …… where the hell is my phone! 

I bought a cover for my phone, black. Not the best choice honestly. It blends in and hides in plain sight. Everywhere. So annoying.

I glued jewels in it. You know, so I could find it. Not helping as they are slowing becoming unglued.

Cases can cost over $25 bucks!  It seems like such an unnecessary re-purchase!  I’m going to glue a crazy fabric in it.  As soon as my mind and body connects to the task, I’ll get it done. For now, I stupidly struggle, ……  Denial.

To be clear, I can think of all sorts of tasks and ideas!  My head is full of them. But my mind body connection is just not in full working order.  One ( there are 3 parts in total) of  the parts of my brain that are affected has to do with increased lack of inhibitions.

I moved to my apartment in April or May (maybe it was June, lol, no idea.) of this year.  I hung sheers and a blind or two.  Even though I knew I wanted to hang my curtains in front of these, I couldn’t do it.

My mum had come to visit from Scotland and stayed with me for 3 weeks.  I told her, ” hey Mumma, I need to hang my curtains, maybe over the time your here we can do it?”.  Absolutely! 

Now, my mum had asked over the course of her visit several times, ” want to hang the curtains today?”.  Arrrgh!  Couldn’t do it. I’m pretty sure she was annoyed at me, but I tried my best to explain. My Mum did her best to allow me the time to try and coordinate my mind and body.

I hung ONE set in late October, about 1.5 weeks after my Mum left ,  at 11 pm at night. My body and mind finally connected.  Glad THAT  response time isn’t an everyday thing.  During the last week, I finally hung the final set. I celebrated with a bag of chips and dip. It was triumphant.

Visually, my window decor looks fantastic!  Warm and inviting.

I hate leaving my pill bottles on the dresser, it doesn’t go with my curtains. Lol

Segue……..

My daughter is married to a wonderful man and has four simply amazing children, my grandbabies.  6 months and 1.5 years are the youngest ; my oldest grandbabies being 10 & 11. I love them so much.

Even though she is married and happy, successful and healthy, she is still my child. I still need to see her grow.

With Early Onset Alzheimer’s, these things become more real, they become truer.

We all know as humans that one day we will succumb to life’s end, but prior to that we will  accomplish tons of things and go on adventures year after year during our lifespan.  80 or 90+ years ( happily more )  is the mark. Barring the fact that a  tragic death event is a possibility in life,  an innate knowledge we all share, but statistically rare, thankfully.

Early Onset provided you with a timeline of errie accuracy.  From diagnosis to death, 4-8 years. That’s it. Those statistics are beatable, but that is the current “advise” for lifespan.

I want so much to have all the adventures I put off “till later”, sometimes,  physically and mentally I am unable to.  It’s not so much that I’m saddened that I can’t ( you know, eat live baby octopus from a stick, …. Nah just joking ) , my life is full and I’m pretty darn happy. It’s the fact that “possibility” has been removed from the equation. That’s the southpaw punch.  The cheap hit.

As I’ve said before, my gratitude has grown emmensely. It’s very satisfying.  I am present and accounted for, loved and respected, and well taken care of by my family.

But, if I had known the statistics?; If I had known more about this disease and the possibilities?  If I had paid attention to this epidemic as it grew throughout the world…….would the outcome be different?  Probably not. 

But I would have been informed.

You should get informed.  If not for yourself, for your family, for your friends, for your husband or wife, for your kids and your grandchildren and grandparents. For your mum and your dad, your sisters and brothers. For your neighbor and your neighborhood. For your church and your work, for life as we know it now and our future generations.  All those things and people that form and influence your lives, they deserve your attendance, your foresight, your dedication to living well and living better.

Fatal illness of ALL kind deserves people dedicated to wellness of life. Don’t assume it ” only happens to other families”; it’s not true.

There are 7.7 BILLION humans, real people , here on this Earth. We are all statistics of this disease and many, many others.

My whole point is, get involved. Love the life you are given and reach out to those you love and that love you back. Spend time. Learn. Advocate for the good. Be good.

Segue……

There are a few people, friends in my online family, that live alone, just like me.

It seems all of us are in the “earlier to mid ” stages of the disease process. We take care of ourselves.  It can be challenging, believe me.

We all take note of the changes in ourselves and share with each other.  We share for many reasons.  One being just to get it out, so we can all laugh……it releases hidden fears.

We tell each other so we can tell someone who will ” just get it!”, No questions asked. No doubt. No astonishment. Very satisfying. No judgement.

One other reason, perhaps, is acknowledgement.  To have someone else recognize and acknowledge these things are real.  So often when you experience changes, the changes can seem so unreal…… Having someone say that they understand is like a cuddle in your favorite blankies.

Fear can be another motivation for “putting it out there”.  Fear of the changes can lock you down.  Immobilize you.  Letting go of fear allows you to function.

The freedom to still make your own life decisions and choices is certainly empowering but the growing uncertainty that your choices may not be correct ones or the safest ones  is bewildering. 

Recent health events with my pals has really affected me emotionally. 

Knowing that each of them has had to handle the care of themselves alone is hard.  I wanted so much to be in B.C. to help with my Canadian friend and also to be in Washington at the same time to help my friend there. It was so hard. 

We all talk about our legal paperwork. It either in place or in process.

I know that there are many, many people with this disease, surviving day after day with out another soul to talk to.  I wish I could talk to them so they know they are not alone. To tell them they are loved.

There is not a cure for this disease. There are guidelines to prevention.  You should look that up and pay attention to your life choices and habits.  Those of us living with this disease no longer have to choice to prevent, we can only prolong our lives, hopefully live well for many years. Heavy.

It’s true when you hear tales about  the doctor that gives you the diagnosis and tells you to get your affairs in order, go home and enjoy your life, take a trip, so do many of the doctors of many of the people I chat with who have this disease. This is not a conversation you ever want to be a part of with your health professional. Be proactive.

My doctor said that, my GP. She said she knows so little about the disease, it’s less than 1% of her practice. At least she was honest. I think she should learn about it, I told her that, she just looked at me. Annoying. Horrifying.

It’s horrifying that the guilded professionals have no idea what to do, much less what to say than the guided script above.

There are currently 4 different types of pills to take. They all stop working within two to 4 years. They do not cure this disease. They keep it at bay, temporarily and in some cases not at all. There has been no new medication in over 10 years although a closed trial has now been reopened as the results were remeasured and the initial results of success were incorrect……..still makes me concerned.

I am a believer in the theory of big pharma. I’m not at all sure that “reexamination of test results”, in other words, taking a different look at the clinical results and reworking the algorithm makes a difference therefore making it a safe and good choice for millions of people. That’s my opinion, I could be wrong, I’d be fine with that. It all just worries me.

Alzheimer’s and the numerous other dementias have been around for decades and beyond.

Remember the crazy cat  woman ?  Probably dementia.  That forgetful uncle or ” that’s just silly aunt whats-her-name. Probably dementia.  What about the old senile guy you used to tease? Dementia.

Although called numerous things, senile, madness, lunacy, derangement, mental deterioration, crazy, mindless and all the rest, it was dementia.

Dementia is the disease, under the umbrella of that disease ….  Alzheimer’s, Lewy Body, Vascular Dementia,  Frontal Temporal, Huntington s Disease, Parkinson’s, Creutzfeldt-Jakob just to name a few. 

There is also the real possibility of mixed dementia. God bless those souls.

I have Early onset Alzheimer’s Dementia.  I am 54.  I have spoken to a woman in her early 30’s. Same diagnosis as me. Her two sons are 12 & 9. She is ONE of the youngest patients in the world.

This disease DOES NOT discriminate.

Now, I’ll try to pull all this together.

It was a long read, full of stuff but in my mind, it is all connected, let’s see if I can put it together!

The daily obligation of “handling” this disease is overwhelming.

Desicion making, living arrangements, wellness, care options, skillsets,  it’s hard.  It’s hard for the person living with the disease as well as the families watching their loved ones struggle with all the changes.

As we, those living with this, struggle ( and we really do) to accept the DAILY changes, our motivation, mood and , well , happiness may diminish. Please allow us the time to regroup.  Allow us the time to renavigate, and accomplish tasks on our own time, we have so little time left.  Personal accomplishments are still part of our human nature.

As a carepartner family, stay insightful.  Our losses do not only encompass lossing one item like a phone,  underneath, our losses are compounded, even though we don’t always talk about them.

Taking a real look into what is POSSIBLE, could change lives.

The things that remain in your control are immense.  Don’t overwhelm yourself as those “control” things slowly unwind and become unmanageable, ask for help, let them go.  If you can’t do it, you can’t do it. Simple as that.  Stay positive. Everyone cannot do ALL THE THINGS, so don’t expect that you should. Share your knowledge with the young ones, family and friends, let them have a go at it and allow them to help. Stay positive and let go what you can.

Keep focused on the things that keep you positive.  Change is gonna happen, let things change. Accomplish great things;  don’t limit yourself by holding on to the past, stay present and enjoy life’s little pleasures, they are relevant and important, so are you.

Support is essential.  Both those with this disease need support as well as the carepartners and carepartner families.

A wonderful group, developed and run by those living and affected by with this disease is Dementia Alliance International.

The organization offers numerous avenues of support, for all of us;  that is where my online family and campfires comes from.  Join; don’t keep trying to do this on your own, there are people who care about what you are going through. I wholeheartedly encourage you to join. I’ll put the link below.

Support and supporting well being group’s is just as important as investing in your life. Understand how each organization can help. Know where your money is going if you choose to donate. Make sure it’s not mostly going to administration and not to the patients. Don’t let big organizations cloud your field of vision. Look for what’s real.

DAI is a world voice.  They are transparent and are in this to fight, recognize in a world scale. For the people, by the people.

Take a trip.  Get a big blankie.  Eat better.  Drink tea. Stay connected.

Love yourself no matter what.  I love you.

This song is so pretty, I hope you feel the magic. Xo

Stay well my friends, Jan

https://www.dementiaallianceinternational.org/