I was diagnosed with EOAD, I’ve moved cities, quit my jobs, fought with CPP, got a new apartment, endured remarkable pain, sadness, and loss; faced many new lifestyle challenges and changes, became bored, found happiness and tried to come to terms with my new mortality. Girl interrupted, that’s me.
It’s been crazy, to say the least.
I don’t often think about the time I may have left, not anymore (although, it comes to the front of my mind in quiet times) I keep in mind my many wonderful moments shared with my family and as well, on my own.
Although I’ve been fighting with this for years, I no longer have the added aggravation of a scheduled work day, deadlines and responsibilities. I have the time to actually look after myself, to actually care for myself. And that’s big. I am grateful.
The learning curve changed, but no biggie. Schmoozing ma’ way into learning it.
Living alone, as I have for so long, you forget the common comforts of having a constant partner. You gain an independence from even that and it becomes the norm.
I often think, “would this be easier if I was married or had a significant other?”, I honestly think it would be harder for me; I think it would be harder for me, absolutely.
I suppose at this time of year I should reflect on the year past; the only reflection I’ll do is what I’ve written above.
I stopped making ” new year resolutions” when I was in my 20’s, false promises to myself were self damaging.
I took on a realistic approach to life years ago, although probably stretched the reality of my world through some of my choices…..but eventually made it back me.
Remaining kind and thoughtful, especially where my immediate family was concerned, honing my passions for art, in both photography and food, as well, business and personal success. I did pretty good. I struggled to reach those goals on occasion, but I reached them and accomplished my own signature style.
It’s been 5 years now, since I first noticed changes in me. 5 fucking years. That is a long time for anything to come to a place of answers. But it came.
So……
My life is this life, same as your life is yours.
My life is what I choose to look forward to, not what is stopping me.
My life is still adventures, good food and good friends.
My life is about family, love and big hugs.
My life is just as it was.
The struggles I will face will probably knock me down, but I’ll get back up for as long as I can.
So 2020, it’s just January 1st, same as every year at this time. It’s just a month of writing the wrong date on stuff. Hahahhaha,!
I’ll make mistakes, I’ll do things perfectly. I’ll have choices, I’ll have to rework some stuff, I will glide fluid. That’s life. That is also family.
I wish all of you an easy transition from December 31st to January 1st, it’s another day in the life.
Don’t put so much emphasis on the hype. Live your best life. That is more important.
That millisecond that changes from 11:59:59 to 12:00:00 is not it. It is you that will make the difference in your own life, not the call letters of the year.
Start a project you never finish, leave a legacy. It’s important. Start building a puzzle and leave it for months on end, it’s perfectly fine. Live the best life you can, that is what makes it valuable and will fill your heart.
I’ll tell you stories of funny new habits that develop as I change in this process, adventures I have and perhaps people I meet. That is my plan moving forward. I’ll fill you in on changes and even struggles I face. I hope you stay connected with me.
My eldest grandkiddies stayed over last night, we rearranged my apartment so that we could all be in one place together the entire time……I’m leaving it that way. I love them.
Cheers to the end of a lovely holiday season and to the new decade ahead. Be kind to yourself and love one another.
Stay well my friends xo Jan
In the spirit of the beginning of the new year, here you go!
The pain started creeping in Friday around 5 pm; by 6:30 I was done. Bed.
I got up today, Sunday, at 7:30am. And by “up” I mean I went from the bed to the couch.
I live in a studio type apartment, so the transition from bed to couch is easy. Not having dividing room walls helps in more ways than just that.
I can easily move around, keep clutter and stuff to a minimum. My walls are full of pictures but the walking space is emence. 35 x 28 @ the biggest, with a portion or the width dropping to 20 wide for kitchen and bathroom.
I only have my bed, 4 dressers, all used as furniture as I have redesigned 3 of them to be used that way. A chest, a day bed on the far side of the room; my couch is a small two seater kinda large chair; a comfy reading chair and a chez that I redesigned as well. Oh, And two big rugs , a large 4×4 automan, floor mirror and an antique floor radio. That’s it. And lamps. Storage. I left all the “stuff” @ the dumpster when I moved.
Anyway, I wrote before about this pain and burning in my spine. It’s gotten progressively worse since May. This time topped all other events.
Apparently it’s the cerebral and/or spinal fluid or both. It also has to do with the grey matter in my Brain. I’m not too sure of the connection ( completely) but I have too much of one thing and not enough of the other. It causes this pain. It’s part of the disease some patients endure, I am one of those patients. FML.
This is the longest event I have had. It was and is absolutely aweful. I only got up cause I felt I could, the pain is still there.
I reached out to one of my online friends, Christine. She isnt having the greatest few days either, but Christine took the time to chat with me, understand and encourage me. I thank you my friend. Xo. We chatted for a while, bragged about our own suffering, compared living skills, laughed and cried a few tears, then went on to encouragement.
There is alot I am willing to put up with in this disease, but there is alot I cannot stand.
I wear size 5 jeans and pants. ( Some are size 7 so they are worse) I have lost so much muscle mass I wear leggings under all my jeans. I have pushed new holes in the thick leather belt I wear all the time.
I am so cold all the time I wear a bra, one or two tank tops, a t-shirt and on top, a long sleeve shirt and a hoodie. No one would ever know how tiny I’ve gotten.
Walking is clearly getting to be an issue due to pain. I have to get cream for my coffee…..the store is literally across the street and I’m gonna have to use my crutches. Totally sux.
All throughout the past 37 hours my sleep was eventful. I honestly just layed in bed, phone in hand, watching Youtube or Netflix, eyes closed trying not to day sleep, trying to stay awake for as long as possible.
You see, the medication I take, Aricept, will make you have nightmare’s. I found out yesterday that daytime sleep is no exception. I woke myself screaming “No No No!!!!!! ” In a fit of fear while I was being buried in the dessert sand .
I’m sure, certain, my neighbours heard me.
I had an incidence like that while at my daughter’s house; my grandchildren were terrified and ran upstairs to their mum and dad.
My daughter’s ran into my room, she was really scared. I was lucid but not lucid. She stayed with me until I was completely coherent. She was so scared she wanted to call an ambulance. It was horrible.
I’m not sure how long I was screaming yesterday, but trying to pull myself into the real world from that lethargic state took a long while.
Arrrgh.
I’ll ask at my next appointment for pain management and exercise ideas.
The time that I spend down just takes more of my life away; time away from my family. It’s annoying.
I know this bloggy entry is way more personal than most, but honestly, it’s part of my journey.
Perhaps it will give a bit of insight to carepartners, perhaps it will let those going through the same let them know they are not alone.
Thanks for continuing to stick around.
Stay well my friends xo Jan
I couldn’t find a song that has a theme with this bloggy thing, so…. Here is a plain feel good song. Enjoy!
When I last met with my neurologist, she stated my diagnosis was A-Typical.
My immediate thoughts went to A & B personality type straightforward definition ( I am B, = Type B personality traits are relaxed, less stressed, flexible, emotional and expressive, and have a laid-back attitude.) A-Typical Alzheimer’s, easy definition, in my mind it made sense, straightforward diagnosis.Wrong.
A-Typical is not an easy diagnosis. In a sense, my Alzheimer’s works backwards. It’s rare, only about 5% of EOS have this type; no familial line, no clear cause.
My last meeting was in October 2019. I just never looked it up. When I did it totally made sense. For some time now I’ve been questioning my diagnosis as I don’t seem to be following the “regular path”.
My online family, we discuss all of our symptoms. Most of my pals have been diagnosed longer than me, but I notice my symptoms are equal to or worse in some areas, but also that I’m missing some things.
I know completely that this disease manifests and progresses differently for everyone, though that was it; but mine was so unlike the many documented paths I have read and the early experiences of those I chat with.
As I said before, my memory is pretty much intact. Once I finally had a diagnosis, the bubble burst and my life flooded back…..stress. ( perhaps?).
With A-Typical , the memory portion of my brain ( Hypocampass + other ) and my Axon ( your brain super highway) are not at this time effected, usually those areas are the first, but not for me.
My Mum kinda had a hard time believing I had EOA, she said, “your recall , processing and intent are not in line with this, maybe it’s something else”. It was hard for my Mum to understand the struggle I was having…..remember the curtains?
My daughter, after researching, Dr visits, contact with other children of parents with this disease, seeing me and monitoring me, I think she had a hard time seeing EOS as being definitive, but she certainly noticed everything else.
I was exhibiting portions of this disease, but things that should systematically happen later.
A-Typical discribes me to a “T”.
Having said that, I will still get all the “things”, just in a different order.
Definition:
Atypical Alzheimer’s disease
In some people with Alzheimer’s disease, memory problems are not the first symptoms. This is called atypical Alzheimer’s disease. It is still caused by plaques and tangles, but the first part of the brain to be affected is not the hippocampus.
In addition to that:
Posterior cortical atrophy (PCA) – this develops when there is damage to areas at the back of the brain. These areas process signals from a person’s eyes and help with spatial awareness. This means the early symptoms of PCA are often problems identifying objects or reading, even if the person’s eyes are healthy. Someone may also struggle to judge distances when going down stairs, or seem uncoordinated (for example when they’re getting dressed).
Logopenic aphasia – this develops when there is damage to the areas in the left side of the brain that produce speech. The person may have problems finding the right word, or take long pauses while they’re speaking.
Frontal variant Alzheimer’s disease – this develops when there is damage to the lobes at the front of the brain. The symptoms include problems with planning and decision-making.
These things I have, they came first, not the memory loss. ( And more, but I’m trying to make it short ) Not so much the first one, but spacial awareness is becoming an issue.
My daughter noticed I couldn’t figure out how to put a diaper on (front to back) with my granddaughters. It took a couple of attempts ( on numerous occasions) but I still got it. Soon there will be no more diapers, for now, I’ll be more attentive or ask for help.
My speech, I pause longer and search more, looking at the sky for answers ( like that would help lol) while my brain searches and my mouth tries to spit out the words. It comes in bits and pieces, but eventually, it will worsen.
I have moments when it’s so fluid, other times I just listen and smile. It’s wierd, I can actually feel when things aren’t gonna come out right, do I don’t talk much till the feeling goes away. My conversations are usually short now; not the usual bantering.
So, I’m a bit backwards, nothing new hahah! I’m doing things differently, in a different order, it’s always been the way my life has been, I’m not so worried. This evolution of me is progressing, that’s for certain.
Today I will be working on a new painting. At least that’s my plan. Once it’s finished, I’ll post a picture of it.
I closed my dresser drawer, finally.
Between my daughter and Google, I’m eating more regularly. We’ve talked about assistance from VON. If I can’t keep a good schedule, we’ll make a decision.
I had previously mentioned, I don’t get brain fogs anymore, still true ( yeyyy! Serrapeptase) but my spine burning is getting worse. Debilitating. It’s lasting sometimes two days or more.
Also my hip. So annoying. Can’t walk long, some days more than others. I don’t go out alone as much, I’m scared I won’t make it back due to pain, I don’t get lost at this time.
When I shop with my daughter, we always use the same path in the store, it works. Once we had to go around again cause we forgot a few things, I nearly died. I was white knuckling the cart.
Initiating tasks is still a thing with me. But, I look around and see most everything is done so I’m more at ease. This is the longest I have ever taken to settle in a new place. I keep telling myself, ” no new projects you take too long to finish them” , ha, I wonder how long that will last.
The guilt and unease of seeing incomplete things is unbearable…… especially when your mind and body cannot connect to finish them. I keep telling myself, get up, just do it…..but no, it doesn’t change a thing. I just wake up one day and finish things, days or weeks later. I’m fine with that now.
I have come to learn that there are numerous, NUMEROUS things related to EOA that no one, not even Doctors tell you about. Point blank doctor’s don’t tell you much. People living with this disease tell you everything.
There is one line of ( currently struggling to find the word)……..the only word in my head is “duality”, but that’s wrong. I’ll explain the thing then I’ll either find the word or you’ll just know what I mean.
There is loss. And the self mourning period is long and drawn out…… Oh, and always hidden from everyone.
This was recently discussed during an online campfire, a portion of the loss.
When you are a mother, you nurture and help grow, as an employer or coworker, you guide and ensure learning, as a friend, you encourage and lift. ( Each role is basically the same, United in the efforts to see others succeed)
When you cannot do all those thing as you were able to do so before, when you see your capacity to clearly navigate basic lifeskills fade, when you participate less, when you realize you cannot do things as before, when you understand you actually negotiate with yourself, when you understand that you are constantly reworking life long methods, ……you experience loss so immense, so frightful that you can’t even talk about it.
That mourning period last so long. It last so long that sometimes when you finally let it out it becomes a surprise to those closest to you because people see change only, no one thinks of the emotional burden.
I mourn the loss of me, absolutely.
I have been fortunate to have a family that listened, but the pain is still the same.
I have grieved the loss of my sister and my father, both died very young. It was aweful.
But this pain, it has been in me for years. It floats silently way down.
We all feel this. Long, much longer than anyone knows. Those years of trying to get diagnosed, the years of struggling never knowing what’s wrong, and all the time, loosing yourself, bit by bit, pieces of you just dying away. It’s a long, tiring process.
It is the one thing we, all those living with this, have completely in common. The ultimate common thread. ( Insert the word I’ve been trying to find here.)
For those who read this and have a family member diagnosed, please think of this. I hope that it opens a window of foundational understanding, beyond what you understood before.
For those living through this loss, I once again send you the warmest hug.
Segue…….
There are two people.
Two people I have been struggling with, in my mind, to reconnect with. I’ve decided not to.
Things have been changing. Nothing too big, although eating seems to be an issue, I forget to do it. 3 days was the longest.
I actually counted dishes and glasses, looked through my garbage and calculated. Seems a few cups of tea, a coffee or two and bottled water held me.
It’s funny, I can analyze things like measuring when I last ate, but yet, I left a drawer open on one of my dressers for days, saw it every day, and couldn’t close it. Oh my brain!
Living alone has its challenges, so I set reminders on Google home. My newest one is set for 2 times a day, it says EAT. I have Google set to an English accent so the reminders are awesome.
Homemade soup is still a thing with me. I love it. I make a big veggie filled pot and always have it on hand.
I’ve been a bit frustrated, that why I haven’t written a new blog post. Actually, I haven’t even been in line much. Needed some time away.
So…….to help ease the building frustration, I went Axe Throwing.
It was frickin awesome!
My eldest grandkiddies and my daughter went with me, ( it’s safe, so don’t be scared to go) and we had a blast! Worked out stagnant energy and felt amazing!
Stagnant energy is awful.
I try to maintain doing yoga and exercise, although it eludes me more than I wish it did. Walking is still a thing, although not nearly as far.
My daughter and I added an ap to our phones, it’s called Life 360. It keeps track of location. I don’t get lost, not yet and hopefully never, but we are trying to stay ahead of the game.
The ap is available world wide, it may be good for you and your family.
At this time of year, we are all able to spend more time with family. The feeling of togetherness is significantly different. There is truly something in the air every holiday season.
Whether it’s the scents and smells, the comfort food, the smiles or the hugs, this season is absolutely necessary.
Family, in all aspects, whether blood or through years of friendships, is essential.
If you have at least one person supporting you, you are blessed.
During this holiday season, here is my wish for you:
I hope you live louder.
I hope you laugh more. I hope you sing at the top of your lungs. I hope you drive with the windows down and let the wind rustle through your hair. I hope you hug. I hope you kiss. I hope you surround yourself with people who make you feel alive. I hope you have good energy wherever you go in whatever you do. I hope you speak what’s on your mind. I hope you raise your voice. I hope that you tell others that you love them. I hope you live louder, shine brighter. I hope you if you have a chance to make someone’s day happier, you do it.
I hope you can change the world and love the weirdos. Love the strange, whimsical,, the outlandish, peculiar, and uncanny. Love the misfits, the curious, the unusual, the eccentric, and the unpredictable. Love the radicaland the star gazing vagabonds. Love the loners, the rejects, the outsiders. Love the silly romanticists. I hope you learn to love yourself…..just as you are.
Stay well my friends, best wishes during this wonderful time of year. Jan xxoo
Merry Christmas to all who celebrate, Happy Hanukkah, Happy Kwanzaa, Happy Family times!
When I am no longer able to do all the things, please remember, I still need and love to have all the things done.
I like to keep my finger nails at mid length, nothing too long. My toe nails, I like them quite short, not to the quick but just so a little of the white part shows. My favorite colour is pinkish red, please paint my toenails.
If you can, bathe my feet regularly;. Please use a nail brush and that scrubby thing on the bottoms, I hate rough feet. Thank you. Lots of cream too!
Please put cream on my hands and body everyday. My skin is soft and moisturized and I’d like to keep it that way, it feels good.
Please don’t forget my favorite face cream and that I use Dove soap on my face, the white bar. I don’t want to age before my time. Lol. I’ve been doing great for almost 55 yrs, I’ll keep it up as long as I can, but when I can no longer care for my skin, please help me.
I’m not big on baths, but I know there may come a time as this progresses that showers will become very uncomfortable for me. If you bathe me in a bath, please don’t add bubbles.
I love funky clothing. Not super tight and certainly not super loose, comfy stuff. Give me a splash of colour and tie my hair up. Please don’t add bows and butterflies, I don’t want to look like a doll.
Let me relax in sweats. Fluffy stuff that is soft. Dress me up nice when you take me on an adventure and please make sure my hair is clean and I have , if you can do it, a light shade of pink on my lips.
Please make sure my bed is worthy of a good sleep. I want you to try it for a night, if you are not comfy, I won’t be either. Make good choices for me please.
If I can still paint and hold a brush, please let me remain creative. Fill my room with flowers and lovely pictures of you and my grandchildren.
Tell me stories of our life, even if you don’t think I’m listening, tell me them anyway, I’ll still be in here, somewhere.
Shave my legs and my underarms. It may be a chore, but please try. I’m sure we can figure it out.
If there is a place I can put my bare feet outside in the grass or in fresh soil, please let me. I will need to be grounded by mother earth, it will keep me calm.
Play music. Always. Don’t put headphones on me. Let me breathe in the melodies as they dance in the air. Just leave it soft and in the background, use all the great equipment I have. Let me listen endlessly.
If there is someone who needs to help you take care of me, please make sure you remember that first impressions do mean alot. Your gut is your second brain, listen to it and don’t choose anyone in haste.
I may not be able to communicate the same as I do now, remain intuitive. Read my body language. It may become more important than any words could ever say.
I am terrified to be in a home. We have talked about my choices and I want you to trust in them.
ALWAYS choose your children first if ever I become defiant. No exceptions. Then remember my choices once again.
In my living years, I do not want you to have regrets or questions. Let’s talk. I am here and present, I want your heart and mine to forever remain free of pain, just as it is now.
I will Love you forever. Mumma xo
My daughter and I have talked about most everything. Our hearts are free and we move through this together. She is amazing. I haved loved her since before she was born.
My son in law is a powerful force in our small family. He is kind and generous, he has a loving heart and is humble. He is a great man. I love him very much.
My mother is the most wonderful person I know. She has given knowledge, strength, love and great foresight. I am who I am because of her. I love you Mumma. Thank you.
My grandbabies, they are my world.
Please talk with your families. Talk to your friends. Let as many people as you can know your wishes. Your wishes are more than end of life directives.
I wish everyone the courage to be able to say all the things.
‘Till the next bloggy thing! Stay well my friends. Xo. Jan
Nostalgia has me locked up today, nostalgia and the future.
For a long while, I couldn’t remember raising my daughter. It broke my heart, completely. The stress of not recalling places, things, where pictures were taken, what happened on those days, why we were in places, ……it was aweful.
Telling my daughter these things, it felt like my world was crashing in on me. I was so scared to tell her. How do you tell someone so important to you, your heart, your life, that you can only recall “the now”, not ” the before”.
My diagnosis ( thankfully) opened my memories. I can recall almost everything…..almost. I see the pictures, they feel familiar now. I know we were real during those times.
When I was finally told what was happening to me, some things unlocked. I can only surmise that the underlying stress of all the “things” was damaging my recall more. It was shutting me down, warning me, ” Jan, you better get this shit under control or I’m gonna systematically shut you down, make someone listen, scream… shout ….. Do whatever but make sure you are heard.”
I went back one more time to the Dr. She finally listened.
I find it odd that I just blurt out things now from when my daughter was young. I just didn’t for so long. My daughter said to me one day, ” Mum, you just said that, a memory, of us!”. It was magic.
I’ve had age appropriate memories ever since. I say age appropriate just to say, I’m within the norm ( sort of) of parents remembering and that feels good. I still find it unbelievable the things my daughter tells me we or I did, like, ” no way!” But I feel that it happened, I feel it in my heart; the memory is there.
As I have said before, my life is ongoing within the past few days or weeks. I do not conciously think beyond that; but the memories are there once we all chat about things.
But what is next?
I don’t research alot. I don’t stress over my diagnosis. I live.
The real life things are all still happening. I adjust. Unknowingly sometimes, but I adjust. The brain is quite magnificent, even now.
But I do have worries.
In conversations with my fellow diagnosed pals and other blog posts of the same, change is happening. Those changes are coming to me. I just don’t know when.
It’s the only looming fear I have. It comes in waves, when I read others blogs or chat with my pals, the fear jumps my bones right in the moment.
I can let the fear go, rather quickly sometimes; I know things are gonna happen, things are gonna change…….but when. When will the changes be so substantially apparent that I’ll just say , uh Oh?…..it’s happening. Horrible waiting game.
I’m assuming, like the path my life has always been on, I’ll take each new thing in stride. I’ll adapt as I need to. Knowingly or unknowingly. Life. My daughter will keep an eye on me. I love her.
Health dosen’t only come from medicine. Health is way more than that. Peace in the heart, piece of mind and most certainly, laughter.
I think being ok with my diagnosis is a big factor of my wellness. Not worring about every single change; life changes for everyone everyday, we all adapt.
Not hyperfocusing on things I can no longer do the same, hey, I can still do them, just different. Although, maybe for someone looking from the outside in it is all jumbled, ha! I don’t care. I still did it. It may have taken me days, or hours as opposed to minutes, no worries. I did it at my pace. Accomplished! Relearning ( re-vamping my world to adapt to my new thought process is more like it) is kind of exciting. Air High-Fives, even with yourself, make you feel amazing! Woot Woot!
A mistake that makes you humble is way better than an achievement that makes you arrogant.
Life throws curves, EVERY. SINGLE. LIFE. EVERY. SINGLE. DAY. My curves are different than others, but they are still curves. We all navigate.
What’s next? Who knows. I’ll navigate it then.
Segue…….
Life is too short to wake up in the
morning with regrets. So, love the
people who treat you right, forgive
the ones who don’t and believe that
everything happens for a reason.
If you get the chance, take it.
If it changes your life, let it.
Nobody said it would be easy, they
just promised it would be worth it. Dr. Seuss
What a great quote.
If you ever find yourself having to tiptoe around people, you are NOT walking with your clan. Find your clan, your tribe.
This is my heritage.
Advocacy, self advocacy and positive vibes are important.
It’s important to keep going. Ask for help.
Things are going get tough. You are tougher.
Make sure your plans are clear for your loved ones to be able to fulfill for you. Get your paperwork in order.
The more we talk, the more knowledge the world gains. It’s all the little things, the small changes that really matter. Tell someone. They need to know. Stop struggling.
Be your own voice while you can. One day, you may not longer have that voice. Say it now.
Take it in stride. Don’t let it all burden you. Don’t let it zap your day away. Learn to smile and forgive yourself . You are beautiful and important. Remember that.
(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
Throughout life, most of us just simply don’t take into account the small stuff, it’s silly when I think of it now.
As I had previously written, this disease has allowed me the distinct privilege to remain present, I see how the small things really add up. I am humbled.
I can’t always put together in my head exactly what each event was, what small thing changed my day, but I feel it, definitely feel it.
My oldest granddaughter, I love her so much. For two years ( almost) in school, I saw her struggling, just trying to fit in.
My granddaughter is immensely beautiful. Striking. She is so funny and laughs with all her heart, she loves to laugh. She sees the wonders of the world, questions why, she really thinks about things. I see alot of my traits in her, an artist, a free thinker. Like my sister Susie, she can pull off an outfit no one else would ever dare to wear. Like my sister Laura, she is book savvy and opinionated. Like my Mum, super smart.
The other day, my daughter and I went to pick her up at school. My granddaughter said right out of the blue, “Grammie, remember last year when I was so sad in school? How I felt so out of place? Like I was always trying to fit in with that group of girls and it was so hard?”. , I said yes and let her continue. ” I don’t feel like that anymore”, she said. Point Blank. Tears welling in my eyes.
I smiled at her so Big ! I told her how proud of her I was. I told her she must be so proud of herself! I told her that seeing her understand that fitting in is not important and was it huge! That the struggle and confusion to fit can hurt so much and I was glad she no longer hurt. That my heart was full knowing she understood just how important she is to herself, to all of us.
For my granddaughter to acknowledge, at 10 yrs old, that fitting in often pulls you away from your true self; that it can dampen your path and close you up, was unbelievable.
She then said, ” People will be drawn to me and I will let them shine, cause I feel shiney now!, I am a strong girl with a big heart. I love you Grammie”.
For me to look at my granddaughter and know that she understands it is her own self and desires that matter, not what other people want you or desire you to be was so immense.
It was one moment, a triumphant moment in the life of my beautiful granddaughter, absosultely huge. Life changing and magical. Small, perhaps in the big picture, but huge in the moment. These moments add up.
Staying Present. Realizing the “small things”.
Segue….
Over the years, I have dropped out socially. I didn’t know that the growth of this disease in my body caused that.
When FB first became a thing, I tried to find as many of my school friends as possible, we all did! Totally awesome!
As the years past, I slowed down engaging with everyone. I thought it was because I started a new career path and I was just busy.
I worked and worked, and withdrew more.
I have spent years in the centre of things, socially and with photography. Photographing concerts with over 20,000>>>* people and world famous entertainment, back stage and parties and many area events, working on magazines, on line uploads and winning area award’s, news paper articles about my restaurant and rave reviews. It all just faded.
I immersed myself in one career. First time in my life. One single boring thing. A career that I worked alone everyday. I stopped connecting. It was my daughter who noticed, not me.
I’m sure she didn’t know why, neither did I, but she noticed and kept watch. My daughter asked me straight up, “Mumma, what’s wrong?” I didn’t have a clear answer, saying I’m just settling down I guess.
I honestly cry thinking of that day.
When you have EOA, it changes you and your life quietly for years. Super sneaky. Bastard.
I am the only one in my family. There is no familial line.
My great Aunt Reta, it is said she had Alzheimer’s, but no one really knows, there are no medical records. It would be reasonable to say her Alzheimer’s was not early on set, her symptoms started well after 65 yrs old.
If I had truly known what was going on, instead of putting off the drastic changes to “excuses”, would things have changed? Nope. I would have known more about the disease, true. What would it change? Nothing. Reality check. There is no cure. My brain is dying. My body will stop working cause my brain is dying.
I am hopeful that the small blurbs I send out for all of those who read this will help in some small way. It may add some insight to your loved ones new patterns. Small subtle changes.
For us living with EOAD, the changes are invisible, but we recognize that we change the way we approach daily tasks. It’s frustrating and it’s hard to explain.
Once you are diagnosed, there is an intimate and immediate acknowledgement of all those changes, now you know why you are behaving so differently, but you still can’t stop it. It’s such a wierd feeling.
Those years that have past,????? how do you recoup the loss? You can’t. You want so much to tell everyone why you faded away, but understand there is no relevance.
The feeling envelopes you and you want to scream. Tell everyone why! ………..
You lost them as much as they lost you. Life is not the same. There are no bridges to mend, the bridges faded as though they never existed. You cannot go back. Time is shorter. There is an end, more visible now. I cannot spread myself so thin to rebuild those faded bridges one by one. That’s why I started this bloggy thing. To tell you all.
I hope it helped you understand why I dropped off. Why I didn’t go to our reunion.
Why I changed. I couldn’t stop it.
If you are reading this as a carepartner, I hope it adds to your knowledge of your loved ones recent life experience.
Staying connected now has gained new importance in my life, it’s different but very meaningful to me.
It adds small bits of sunshine to my day.
I am thankful to be able to share these thoughts and insights. I am thankful you read them.
I miss my friends, I miss all of you. I’m glad we were able to reconnect in this small way. I am thankful.
I don’t fit in in many of the ways I used to, but I fit. I’ve never vied for top spot and always knew when to stop seeking those “things” that just didn’t fit me. I remained true to myself, although I did endured much heartache when I persued things I thought I wanted, I did however regained my life aknowledging my path was heading the wrong direction.
My granddaughter has found her direction. I have found my new path as well.
I’ll continue to write and share my thoughts with you even though we might not see each other in person. I hope you will keep me in your life in a small way, as I will forever keep you in mine. My heart will remember you even if my head dosent. Love you all xxoo A small gesture of connection.
My last week ( perhaps two) has been unusually hard, just a bit out of sorts, life just not beating the rhythmic pulse I adore.
I’ve been ill with some bug, pneumonia. Never had that before in my life. It’s horrible. I rarely get “bug” sick, haven’t had the flu since I was in my late teens, I can go years without a full blown cold, only sniffles here and there. I am a big believer in vitamin C. It’s awesome for not only your cold symptoms and dispelling them, but your skin and brain as well.
In the midst of all this, I am still maintaining my best attempts to stay connected, physically, as well with my on line family at our campfires.
I stayed away from a weekly gathering that I love so much, just incase, many could have been susceptible. I made sure during ” the incubation” period, I stayed close to home, it was the time when I could feel something was creeping through my body. I knew something was amiss. Instincts still in Spidey mode. Lol!
In my past bloggy thing entries, I have said how much I want to help, advocate, make a difference, especially locally. Where I live, I feel there is not a lot of support on so many levels. Nothing in the forefront; just silent movements in the background, in my view.
I feel, on a personal level, that within this region, this disease ( even though there are almost 8 Thousand people living daily with Alzheimer’s in a population quite small), that the fragmented lives are left to errode. There is still a looming silence.
At this point in my Alzheimer’s , I believe I can make a difference. I opened myself to offer myself, experiences, knowledge and heart to help change what and how my region is viewing this disease.
It’s not working how I thought it would. Don’t get me wrong, there are things that are going on, but to me, it just doesn’t jive. It’s not progressive enough.
After a lovely welcome at a meeting, enthusiastic responses, I feel my efforts were in vaine.
Change never happens overnight. I know that. I know I don’t have the power to do that. It’s a collective movement, and it can take time. But I am lost in the very real notion, that time is a luxury I, as well as many others, no longer have. So I feel broken, kinda empty.
But not defeated. I have overcome many obstacles in my life, this is just another one. Point blank. I am not deterred.
I’ll update you on my progress as that rythmic pulse heightens and becomes aligned. No race is ever won on the first corner.
Segue
Just looking at the clock. It’s well past 11pm. Sleep and the patterns I now experience are silly.
” Still it cried ‘Sleep no more!’ to all the house: ‘Glamis hath murder’d sleep, and therefore Cawdor shall sleep no more,—Macbeth shall sleep no more”. W. Shakespeare.
It should say Janet shall sleep no more!
It all just sort of happened, sleep has become an elusive jokester at times, unpatterned and random. So random at times it would worry me.
Years past, I loved a good nap. My cat naps lasted 3 or 4 hours, very catlike indeed! Now, arrrgh, seriously can be 7 minutes!
I fall asleep, then when I awake, only minutes have past. Seriously??? Did that just happen? It’s super wierd.
I know that I don’t physically feel exhaustion as I did before; I am no longer working, I gave up driving voluntarily not by Drs orders, don’t spend a lot of time shopping or in restaurants, I walk daily, some days more than others. My life is not as physically “challenging” as it used to be, but I stay fit.
But my brain, that gets exhausted. It honestly took a while to figure it out, what was happening. My brain was tired, my actual brain.
With this disease, as we try to process, navigate and do “all the stuff” daily, it’s unknowingly exhausting. Our brains have spent years rewiring itself so we can maintain “all the stuff”; constantly finding ways to keep working. THAT is exhausting stuff and also so amazing!
Dear Brain,
Thank you for trying so hard. I know you are still trying to keep me going, you are the best, sincerely, Jan.
I can only surmise that these new cat naps are the results of the ongoing efforts by my brain to keep me running. I’ll take it!
Nighttime sleep is a whole other creature.
Bed by 8 pm, up by 4am, sometimes 3am. ( Obviously except today, lol but I have a sneaking suspicion I’ll still see 4am)
At first I found this so annoying, frustrating. Who wants to be up in the dead of night? The birds aren’t even tweeting.
But now, I enjoy a new silence in the ambient light of the predawn sky. The moment before the dawn is truly the darkest. It’s absolutely beautiful. And suddenly, the sun peaks in and the world brightens to each beautiful day.
I have missed seeing this wonderment most if my life, only reading of this beauty in poetry or hearing if it in spoken word.
This disease, although devistating, has also provided real opportunity to experience many things I have longed to. Small thing, real things. Life got in the way of living these experiences. I, again, am grateful. Strangely grateful.
Having said that, being grateful is a choice, no matter the circumstance. Gratitude is stored in the heart not the mind; that is powerful to me, those few words. In the time to come, I may not remember the word, but I will feel it.
There is 100% chance in the coming years I’ll never remember these early mornings as well, but I will how just how alive they made me feel, forever in my heart.
I know things are changing. I’m stepping out with Faith.
Here is a beautiful song by India Arie, be inspired!
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