Moving day went great! Hi everyone! Hope you are all well and safe!
The days for me have all melted into a huge ball of ” no idea what today is”, but I am not in the least concerned! I usually stay aware of the days with my pill dispenser thing, however, I haven’t filled it, so I’m lost.
I loaded my pill bottles into my purse a few days before moving as I was so scared to loose them in the move; there was a definate possibility of misplacing or mislabeling a box so I just dumped them in my bag. Now I’m completely out of sorts with the date and day of the week…..once again , Blursday. I’ll catch up later, no biggie.
This morning I made breakfast for my oldest grandchildren and my son in law, it was wonderful. I also made a deal with my grandkids that if they make their beds ( rather, pull the sheets and comforters up to make it look neat, lol) for 30 days, they will get $50.00 each at the end of 30 days. Boy, were they excited!
THEN I told them the rules, bahahaha! No freebies.
I will admit I always cave when it comes to my grandkids, much to the dismay of my daughter and son in law. But this time I vow to stay strong ( lol).
The rules are: out of bed, make your bed, keep it neat and clean, 30 days. No excuses; if you need a reminder, if you ” just forgot”, no reward, the cycle starts again at day 31. That’s it!
Now let’s be clear, that may be a long 30 days, possible sad faces and all sorts, but I’m hoping for self accomplishment and awareness, goal setting and participation. I love them and I know they can do it! I hope I don’t bend any rules.
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Without a doubt, the move drove my pain levels through the roof! It also added a strange amount of confusion in me, so much so that my daughter became concerned at one point and told me to lay down.
In addition, over the past few weeks I’ve had slight swelling in my hands and feet, nothing uncomfortable, but I’ve been aware and monitored it. But over the course of 3 days, my feet, both top and bottom running up my calves and shins, as well, my hands, fingers and forearms all racked with nerve pain, swelling and redness; throbbing. Stupid new things.
There was also highly aggravated nerve pain so deep inside my legs and my lower back , spine and hips that I couldn’t walk standing straight.
My granddaughter, who is 2, goes down the stairs on her bum, I used this technique a number of times.
To be clear, I do not have arthritis. I do not have old injuries or once broken bones, I have good bone density, still strong muscles although I have loss some muscle mass. This is nerve pain. The sensory receptors, likely in my parietal lobe, are causing this. The swelling, well, it may be from my medication to block the nerve receptors or it could be dementia related deterioration in the brain somewhere.
My doctor changed my pills and dosage, but the change is still within the same family of pills. I have to report back in one week, via video telemed, during Covid, she will view my feet, legs and hands remotely, I better shave my legs. Until then, I’m just taking it easy, feet up and resting.
I got a small hand rail send by my Occupational Therapist, I never knew how much I needed it until I used it just once. I cannot believe how long I let myself struggle.
It’s a hard thing, sometimes, to understand that you need help, much less ask for it or admit it. With dementia, you develop ways around actions to keep things moving, to remain productive and independent. It is hard to come to terms with what is slowly becoming out of reach. No one wants to feel unwhole.
As a care partner, the importance of understanding how hard it is to let go and accept help is important; remaining insightful, empathetic, and intuitive is essential.
As a person living with dementia, please don’t let it go as long as I have for some things. That is so hard to do, I know, but I also know that allowing yourself to let go of the small things allows you to flourish with the bigger things. I could kick myself for not taking my own advise sooner. I love you guys, XO, we must choose to be kind to ourselves more often. XO
Welll Helloooooo! Any idea what day it is? Lol! Hoping you are all doing well and staying safe, no matter the day!
I honestly thought it was just a couple of days ago I wrote a blog, but its been 7 days. It would seem the days have melted together. Again, I have been locked in a knitted blanket of pain. I just wish this would stop. Its messing up my quality of life.
To be clear, I do not feel a sense of overwhelming whoa and sadness with this, I am upset that the plan I had for the path of diagnosis is not going the way I planned. That must sound kinda crazy, but…… this is not how I EVER expected this to go.
There is such little information about the TRUE pieces of this illness in the world; even when i started researching, I had to go down a rabbit hole of information just to find out what was possible, and then, another rabbit hole to find out if what I was experiencing was even part of this disease. It is so upsetting to find that the amount of readily available information is scarce. More on that later. I’d like this to be a lighter and happier blog. I’m feeling kinda good so far today so I’m riding that wave on a long-board hoping it won’t crest too soon. Kowabunga!
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So, you know when you are packing boxes and you put down the marker you are using to label the boxes cause you feel you can put just one more thing in there; so you go back to the kitchen, grab that one thing, come back to the box and BOOM, the marker is gone? Yeahhhhhhh.
And then, the cello wrap spool you are using to wrap around the dresser in order to keep the drawers closed? After you take such good care going round and round, ensuring each drawer is captured, tightly wrapped and so it won’t move or slide out, then carefully cut the roll, put the roll down, turn to push the dresser back against the wall and BOOM the roll of wrap disappears? Yup! Its like wrapping Christmas presents and constantly loosing the scissors and tape. To put the Christmas analogy ( an also the situations I mentioned) into perspective, that is something that happens once a year, try having that happen everyday, with everything.
Every time I find something I’ve lost , I start singing the 95 south song , “Whoot there it is, Whoot there it is”, and do a little dance.
My days have been exactly that, hahahahaha! I am making coffee and just plain forgetting to put the coffee cup in the holder. Its been quite a week. I can only laugh, clean up the coffee or move on to another packing task, no biggie.
Having Dementia means there are many times in a day that you just move to the next thing. Whether it’s that, in the moment, you honestly just can’t recall what your intention was, or , in the moment the pieces just don’t fit together and its just best to keep moving forward, to the next thing, safely.
In other scenarios, I could have something sitting on my counter for days, no idea why its there and no real care that its there for that matter; then one day…… “oh! I should put that in the bathroom.” I think that is part of my executive function and perhaps in combination with sensory perception. Alzheimer’s affects perception because the disease slowly destroys the parts of the brain that are responsible for converting sensory input into meaningful information. Technically, the eyes do not see; the ears do not hear. Executive function is impairment in part, like goal-directed behavior, intention does not always mean completion.
It has taken me a while to notice those types of things, mainly because I just didn’t notice those type of thing ( does that make any sense?)
Working with food for such a long career in my life, you develop rhythm of exactly how you go from A to B, start to finish, its in your head before you start. That is how a good chef becomes great. Beyond the creative aspect, you need to make sure everything remains rhythmic, from the placement of ingredients in your station, your tools, to the cleanliness from start to finish. Its a pattern you develop, a skill. Consistency, accuracy, timing, safety cleanliness and endurance. If you take all those things I have been so used to doing and apply them into my life as it is now, things have certainly changed.
The struggle is real.
At this point, the “struggle” is manageable. Things are happening here and there, nothing too consistent….. but it’s there. I can laugh at the funny things I do, and I am hopeful that I will be able to do so for many more years. I truly believe that the interaction and connectivity I will have once I move will help in slowing the process of those things I notice now, or at least keep it the same for some time to come.
I know that at first it will be such a change, perhaps even too busy for me, but my daughter and son in law have ensured me a place of my own, with quiet refuge and freedom to stay well and whole.
I still thoroughly enjoy cooking, but I keep the bigger meals allocated to my daughters kitchen. I am looking forward to digging deep into my creative mind once we are all together. I curbed all of my cooking early in my diagnosis, I thought it was best ( I left a pot of water on the stove and let it burn dry, it scared me and I stopped all things cooking that I did not have to stay at the stove to cook from A to B when I was at home and alone.) It was an intentional conscious decision. Safety.
Consistency, well, that may be a bit harder to achieve in the first few days, but I certainly have an innate knowledge of the fact that I must take care of myself. Although it will be hard to pull myself away from the “mayhem” of the coming days, I know that I must put myself first, remain consistent in the way I treat myself well, and that includes quiet time and regeneration.
Timing is another consideration. Living alone for so many years meant a hands free approach to life ( loved it); now knowing my crazy schedule of sleep ( I get up way earlier than my family, I’ll have to tip toe and not wake up anyone lol. ) and other such things related to my Dementia, I think timing is going to come into play in the same way I am used to, hands free. Because of what my days have warped into in the last 6 months, my timing will consist of only what it will be.
Accuracy, well, I’m not concerned, LoL. My older grandkiddies will help with that, they are so loving. Cleanliness, I’m still keeping things neat, (after-all I’ve reshuffled my boxes 28 times to look spectacular! LoL) I still love doing dishes and keeping the bathroom clean, I’ll do better on making my bed, and I love a clean kitchen, but who knows, things could change, for the better or perhaps not, just gonna ride the wave. And….. there is always that chance that I just don’t see the things I may leave around. Ill hopefully be more conscious of those things, but honestly, I won’t mind having a gentle reminder.
With over a month under out belts of additional isolation…… I miss just wandering around the grocery store, just looking at things, Simple life graces that keep us connected; the actual impact of this is starting to affect me.
Even though isolation has become a part of my life in many ways, the added pressure ( for lack of a better term) had only added to the loneliness & separation.
I am lucky, however. In a few short days our house will be ready and I will be with my family.
I would like to share some of the relaxation measures and techniques I use to help me remain whole, I am hoping they will help you, in the event you are feeling not quite yourself. I have found that these small measures have allowed me to bring me back to myself, think clearer and be at peace with the going’s on.
My daughter calls it my “hippie mumbo-jumbo stuff” hahhahahaha, but I love it. I have followed Kelly Howell for years, her meditations have helped immensely throughout my life. It is part of my mindfulness practices.
Next, pure lavender oil. Lavender oil on your feet, on the soles of your feet. The soles of our feet have large pores so they’re the perfect place for essential oil absorption. A good high-quality lavender oil on the bottom of your feet, a quick massage, cozy socks and crawl into bed. Happy sleep. You can also put a small amount on your pillow case, let it sit for 10 minutes before you go to bed and the scent will be subtle but effective for a good nights sleep.
That is my two tips for today, hope they are useful to you!
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WEll……. took some time out again because my pain came back, and it came back 10 fold. So Awful. I wrote in my last blog, I thought it was creeping in, well it did. I cried so much.
When the first real pain started, when my brain in the Parietal section started to show its true colors, it was absolutely horrible. I had never felt anything like that in my entire life…… and I thought I had it under control. I thought with my natural anti-inflammatory stuff and the meds the doctor gave me, I was good for quite a while. However during that while, I did not keep a good eye on my anti-inflammatory and started running low. Huh! imagine that!
I have a standing order on Amazon ( much less expensive than my health food store and it delivers) but when I first starting experiencing pain I added 1 or 2 extra per day till my meds kicked in, I didn’t account for the “shortage” and let my delivery date remain the same.
In my region, the Health Food store that carries my specific brand is not a stand alone store but located in a shopping mall. We have 2 malls. Both are closed during this Covid19 time. Stuck.
I asked my daughter to see if she could change things, but alas. Anyway…… I streamlined my remaining pills over 2 weeks, reducing my normal dosage. Boy did I pay for it. Slowly but surely I could feel the pain creeping in. A bit here and there, subtle.
I started feeling odd sensations. It was like I could remember those sensations, way in the back of my mind……something familiar. I never imagined it would fully rear its head.
My daughter was supposed to drop by with my groceries ( I love her), and I called her. “Honey, I think I’m having a body fog” That’s what I call it, I no longer get brain fogs, its been now over a year, my experience now is a body fog with pain ripping through my back like fire and systematically lighting all the nerves in my body from the top of my head to my toes. She was so surprised , she couldn’t even say anything for a few seconds.
Again, since Wednesday of this week, I’ve spent most everyday in bed, fitfully trying to sleep, get comfortable and crying; the two weeks leading up to that, carefully safeguarding myself and hoping to avoid that happening. That’s why I haven’t written anything. My safeguards and self preservation steps into first place during those times.
Wednesday was also the day, my anti-inflammatory was delivered. I feel better today. My daughter changed the delivery to every 30 days. I can stock up now, just incase.
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My Dementia manifests in all the ways I have described and there is still more unknowns to come as well as the “knowns”. This disease, although labeled in blanket form, manifests differently in every person diagnosed. Although I have been diagnosed with Early On Set Alzheimer’s Dementia, I am quite sure, for some of you, my journey is not what you expected or thought to be EOAD. Well, this is how my Dementia is playing out. Uniquely, just as it is playing out uniquely in every other beautiful person diagnosed with EOAD. That is also ONE of the reasons doctors have very little answers.
I am back up and just chugging along.
There is a connective line that all people with any form of Dementia share, it’s just there. WE just do, we just go on, we just live. We strive, we continue our days, adjusting, sometimes unknowingly. WE become the warriors, silently. We evolve into who we are in each day without skipping a beat. We just continue, different each day , perhaps, but no worries, chuggin’ along for as long as we can.
Mindfulness, as I mentioned above, means neither dwelling in the past, nor getting caught up in dreaming about the future; remaining focused on the here and now, the present; allowing yourself to experience, fully, every single moment, and savoring it. It means less internal conflict and overwhelming thoughts, providing a clear path to less stress and suffering. I think that practice had led me to be able to accept this as fearfully as I have.
So once again, I send to all of you, the Warriors of this silent, intimate success, all of my love. xo
Segue……..
MOVING IN 11 DAYS! My Son-in-law visits the build almost daily and updates me with all the details. Love him.
My grandkiddies, the older ones, well, the excitement is muted. The isolation for them is still full of school work, Karate lessons via on line lessons, and no physical contact with their friends. Right now, they can’t imagine just how much this is going to fulfill them. But once it comes……. I cant wait to see them light up!
I am buying them all new bedding and google mini’s for their rooms. The mini will be their new alarm clocks, intercom for the house ( magical in many way including me pranking them hahahahaah) a learning tool for studies and so many other things. They are the light of my life.
Soon we can get back to the forest, I may not be able to walk as long, but this means we can sit more, observe and tell funny stories while sitting longer in that beautiful place.
I am totally diggin’ the “hush” that is happening in the background of life.
I was chatting with ma’ pal Chrissy, and she mentioned how well her brain seemed to be working and I yelled out, MINE TOO!
Now, just to be clear, when you have Dementia, you question it, you think, “is this one of the moments that are better before it gets worse????”, those are real life things, worries both shared by those diagnosed and their care partners.
After we finished our loud elation’s of ” No Way! you too” and “OMG!!!! I thought I was imagining it! WOW!”, and out loud belly laughs, I think we BOTH realized that this is a real thing, even for us with Dementia.
Its been a reported fact that this is indeed real, I just didn’t knowhow real.
From Brussels, to Mexico, To California and to Canada. The effects of people adhering to “social distancing” and “lock down measures” and all that entails , has had an enormous effect on our environment, our seismic activity all over the world, our sleeping patterns and the good sleep we are getting, as well the animals, our plant life and of course decreased air pollution. But what I have also found, that beyond all of that, my dementia mind is calm.
Having Dementia means a whole lot of things are happening at once, all the time it is often associated with Adult Attention Deficit Disorder, AADD. Keeping a calm mind is often quite difficult, there is so much we have to think about. And on top of it all, death……
None of us want to die, but we, those diagnosed with Dementia, have been given a timeline of sorts. We were aptly provided with “probable lifespan”. in other words, from diagnosis to death. Its always there.
If you have a deadline at work, or a deadline to hand in your paper to a teacher, you do all you can to meet that deadline. I hope you see what I’m saying.
Beyond the thoughts of trying to get “all the things done”, there is spending time with those you love, trying to struggle through everyday activities, making decisions, wondering “when the hell did I loose my ability to write with a pen?”, ” remember appointments, make appointments and get to them, intermittent sleep, pain and phantom pain, questions, input, finding things in the fridge that go in bathroom, washing your face, taking a shower, learning new skills, Doctors, Lawyers, patience, impatience, the dog, cooking, eating, forgetting, blurred vision, hallucinations, speech loss or impairment, wondering and more wondering, repeat words, repeating phrases, confusion, remaining aware, daydreaming, hyper-focused-ness, could care-less-ness, nightmares, day-mares, burning food, stopping cooking and driving, loosing lifelong abilities, loosing life long privileges…………..arrrgh… striving to live well, it can be difficult, even for a healthy mind….. I believe that the quiet of the Earth is helping.
Seeing so much of what we go through, written down, is harder. It hurts to write it. But the things we go through are immense. Living a life where no matter what the odds are, your try to survive, gracefully. You do your best to live well.
The current CALM of our little blue planet is in my view, a blessing. For me it has allowed much needed uninterrupted sleep more days in a row than the last 5 years.
Do you feel any different? Do you have a clearer mind? I invite you to send me a message regarding this. I would honestly appreciate hearing from you.
I know that there is so much going on, jobs are lost, our human connection as we know it has changed, so many things will change moving forward, but that is not what I’m talking about. I’m talking about you, your state of calm.
Most people I know, seem to have an “inner knowledge” of “this is just how it is, it will be this way for a while, but things will get better.” Hope remains heavy and real. I think the calm has reached them. I am hopeful that those who are having a hard time dealing with all the stuff going on, begin to feel better, start to sleep better and feel better.
For me, I needed this. I needed the calm vibrations instead of the bumpy ones. I am enjoying the quiet and the good sleep I am getting. I am productive and have a bit more clarity, something that has eluded me for years.
I am torn by what is happening in this wonderful world of ours, and for the region I live in. I worry for my Mum, we are separated by an entire ocean. I worry for both of my daughters, my -son-in-law, and all my grandchildren, I worry for all of my friends, hoping they are all staying safe. I can say now, though, I am not overwhelmed, I am very grateful.
I hope that you are staying safe and well, I hope that the CALM that has come from the slow of the earthly vibration, a vibration that may very well have hammered us for years, I hope the CALM reaches you.
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I am trying to remember a “jingle” , well, a little song we used to sing as kids in the schoolyard. I have bits and pieces, but I can’t quite remember the whole thing.
It has little pieces like this….”Beech-nut chewing gum, chew it all the time, Beech-nut chewing gum, it only cost a dime, dime dime.”
I want to remember it. Can ya’ give a girl a hand? Thanks
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I’ve been packing, still…. well, all my boxes are done, I just need to wrap 4 bigger items (dressers), take apart my bed and decide what to do with the straggly stuff that sits randomly around. I think I’ve done quite well, but I guess the truth will rear its ugly head once my daughter helps me unpack, I’m sure there will be surprises. Hahahahaha!
Clothing is a hard thing to part with for me. I have a style of comfort and ease, but some things the more dressy stuff I’ll probably never wear again, like the stuff I wore to work. For some strange reason its hard to part with.
I’ve managed to rid my closet of most things, but there are still those that I know I’ll have no use for, still not finding the courage to bin them.
Perhaps its the part of me that just can’t let go of the “what if”.
I think I, maybe all, of us the earlier stages of Dementia, still have hope that this whole thing will just go away, like it was a mistake and the Doctors & tests are all wrong. Its a secret wish I have all tucked away inside that often pop’s out on the days I feel so much like my old self.
I know that its not true, but still, it keeps me from releasing the small things, like my clothes. Its odd. Those fleeting moments of hope can bring you up or down; right now I know its just the memories the items hold. Funny.
I’d like to share with you some of the tools I use to help me live a better life with Dementia, more specifically, my outlet to feeling a part of a community.
I have often left links and suggestions for joining an organization that I truly believe saved my sanity with all the crazy changes that I go through. The organization is Dementia Alliance International ( DIA) https://www.dementiaallianceinternational.org/ .
DIA was founded by Kate Swaffer. Kate too has been diagnosed, and during her time of research and trying to find more answers than questions, Kate knew there was a need to stay connected, so she founded DIA. Her motto, and the organization motto is , “Nothing about us, without us.” Kate stands behind all us of on a global platform. Here is a bit more on Kate, its a great read! https://wordpress.com/read/blogs/25395157/posts/15219
I need to let you know, with all honesty, it has is some way saved my life. When I was diagnosed, although I was relieved ( as i have explained previously) it still hit me like a ton of bricks, I mean, really, I was told I was going to die and my brain will systematically tell my body and organs to stop working, my body will fail and I will die. I was 54 years old.
I was told that functions, both small and large will just, or over time, just stop working. I read up on the things that would happen, how it never happened the same in any two people, that the disease is an anomaly, that one person’s journey is never the same as your own, and then finding out that there is really no help, no stopping this thing, no cure.
I reached out to DIA. I had no idea what it was or if DIA could help on any level. But then I met the people who were just like me. People who didn’t question what I was experiencing or sluff it off as being “in my head”.
Through video chats with 5 and sometimes 10 people at a time, I finally, finally, felt real. I felt like I was the velveteen rabbit and in one moment all the fur was loved off of me and I was real.
The people that I met and whom i have since grown so extremely close to, welcomed me without judgement or odd looks. They were the same as me. Everyone had Dementia. And EVERYONE was thriving!
My crazy symptoms were not so crazy after-all, the were real. Many of the extremely warm and loving people that I have met ACTUALLY had some of the same stuff! Honestly, I was in awe!
We chat , we laugh, we laugh about our symptoms, we give support to each other as our life skills change and give encouragement through our own experiences, we bitch and complain, we talk about news on developments in research…………but mostly we just laugh. Its like talking to all your favorite friends all at once, face to face, united.
I invite you, with the most sincerest and openness of my heart, that if you have been diagnosed with Dementia, meaning Alzheimer’s, Early Onset (Young), Vascular, Frontal or any of the other numerous form of this disease, to join.
Its FREE. you just need your email address and download the program to allow you to join our video chats, it takes like 3 seconds. You can do it on your smart phone or computer, I have it on both. Its no different than messenger or any other video app you may use now.
There are video “meetings”, groups, that meet every single day of the week at all different times. There is also a dedicated group for those of us who live alone. People from all over the world, every state province and country. There are a lot of us.
Bring your dog, your cat or your hamster….. let your kids pop in and say Hi! Let your spouse or carepartner join in. Its all up to you.
Listen, you’ve read all my stuff, I tell it like it is, I have never held anything back, I’ve only taken brief breaks when my symptoms have overwhelmed me. THIS, DIA, will bring a light into your life. All those feelings you keep bottled up, can be relieved , I mean it. You are not alone.
If you get confused filling out anything, please contact me or ask for help by a loved one.
With the world in such a state, we can absolutely be filled with even more loneliness & confusion; dire isolation and separation are even more effective to all of us trying living well; I hope we, I, can offer a bridge to happiness, laughter and friendship.
I hope to meet you soon on one of our chats. xo
Next…………
My executive function are so up and down! somedays I can’t even make a decision!
I don’t have trouble ( at least I don’t think I do) choosing the appropriate clothing for the weather, but let me tell you….. deciding what to wear, like which pair of pants, shirt or T-shirt has become an issue. I honestly give up cause its so overwhelming that I find I wear the same thing over and over again cause its safe. I think that”s showing signs of decline.
I see so many little things that are coming together building my pool of decline. It doesn’t upset me, I am kinda in awe of the things that I am loosing, more in awe of my ability to reline my skills in spite of it. Right now its just small things mostly, some other small motor functions are annoying, but I ask for help when I need it.
My speech is another thing. I word search more often. Look more to the sky for words more often, pause a bit more.
I believe I hold the record for “More Pees Per Day” than any other human being. ” and the Grammy goes to……. Jan, winning the incontinence award for her first year in a row…… ” “Bestill my heart! I don’t have anything prepared” says the woman with Dementia, me!!!!! Allow me to just Ramble on! hahahhhahaha
Still ongoing is the fact that I have to go over my blogs time and time again, I just drop out words. They are in my head when I am on course in my head to type things out, but alas, the words don’t reach my finger tips to type them in. If I miss something, I hope you can fill in what was supposedto say, thanks.
Segue…………….
Don’t judge me…….hahhahhahahh
Yesterday, I had to popped over to the small convenience store, I thought I needed cream , I seem to be drinking a lot of coffee ( although it doesn’t keep me up, odd……lol ) as I just finished up what I thought was my last container.
It kept running through my head that , wait… my daughter just bought me 2 containers the other day. But still, I was convinced I was out of it.
I contacted my friend Chrissy, told her I was freaking out cause I had to go to the store. she immediately told me to to be safe.
I got dressed ( I seem to live in my jammies lately) and put on my mask. I made 4 of them. Pretty good job too! Even added a filtering fabric so no moisture would collect. Look at me all inventive and stuff!
Anyway, I got to the store and someone was at the cash, so I turned left in the store and went around the long way through the isle…..and there it was, French Vanilla Frosting.
When I got home, I grabbed a spoon and ate 4 spoonfuls. Oh my life!
Sugar is not good for us who have Dementia. Sugar causes inflammation.Inflammation is part of this disease. What the hell was I thinking????
I wrote quite some time ago that I take Serrapeptase; it is a natural anti-inflammatory. I started taking it 3 years or so before I was diagnosed and it unknowingly had been helping me. My own experiences with Serrapeptase have been absolutely fabulous, many others who have been diagnosed with the same disease have also seen great results, I am not suggesting you use it, but it really helped me.
Moving on…… so as I was saying , sugar causes inflammation. I just ate the equivalent of 1/2 cup of sugar. 19 grams of sugar per tsp = 114 gr. 114g = 1/2 cup. I don’t no how to convert it any further but a 1/2 cup is HUGE!
Seriously laughing at myself. And by the way, I found the cream my daughter got me, in the fridge ( thankfully) but not where I usually put it. Now I have 4 containers. More shady decline. lol.
In the big picture, I don’t really care. However, reductions in brain glucose metabolism have long been associated with Alzheimer’s disease. The brain is the most energy-demanding organ of the body and is critically dependent on a daily supply of a quarter of a pound of glucose. It kinda looks like this:
I threw out the French Vanilla Icing, I just needed a fix. I have sugar, a nominal amount, in my coffees, there is no sugar in my cream or any other part of my diet, but natural occurring sugars in fruits and stuff. I do really well with sugar.
I thought it was just funny and I wanted to share with you some of the crazy things I do.
My pain level has been quite good for a few weeks, I’ve been very happy. It would be great if there were no further incidences, but alas…. its coming back.
Little bits and pieces, but its there. Hoping its a “one off” and perhaps I’m sleeping in weird positions and its causing it. I’ll call my Dr, if it persists, for today, I’ll take a Tylenol with my regular pills. My biggest concern is, well, since I experience symptoms that are “typically” in later stage Dementia now, what the hell can I expect in the next short while? I am a bit scared. Some days more than a bit scared.
I’ll keep you posted.
For now, I’m pretty happy, I’ll be moving soon and it seems all other worries fit in the secondary category. I’ve been planning gardening, watching Youtube for hints cause ma’ brain doesn’t always remember sequences for rotations, I’ve been busy lol.
First, there’s denial, This virus won’t affect us. Next, there’s anger, why are they making US stay at home and taking away our activities? And then there’s bargaining: Well, okay…. if we social distance for just those two weeks everything will be better, right? Now, enter sadness: I don’t know when this is going to end Im kinda scared. And finally there’s acceptance. This is happening; as a family, lets figure out how to get through this.
During this time, there is a great deal of uncertainty, that’s for sure. I am truly empathetic to the life changing aspects this whole pandemic has caused. My heart hurts as much as anyone seeking the images from Europe, NY and hearing how COVID19 is spreading throughout communities far and wide, including mine.
This post is not about COVID19. In this writing, I’d like to explain the grieving process I myself went through, as well as, perhaps, your loved ones, or you yourself are going through having being diagnosed with Dementia.
Although the first paragraph is truly quite an eye opener, I’d like to show how the 5 steps, or stages of grieving can apply to people as you or your family member live through the stages of grieving their own selves. Just a note: Dr. Elizabeth Kübler-Ross added 2 other steps in the chart for grieving in her later research; the shock stage and the testing stage, I am using her first published conclusions using the 5 stage method in this writing.
In the example of COVID19, as above, there is a collective grieving that is taking place world wide, it is a common thread that again, perhaps to some unknowingly observed, that unites us as one world, one people; it places no boarders, no exemption, no religion, no creed: we are one human race all trying to heal. There is a lesson right there.
This process of the 5 steps also happened to me, its still evolving in me; I am not quite sure what “stage” I currently in , but I do believe I am a mix of all the stages.
With this disease, there is a constant and ever changing development of symptoms and loss of skills. So is it realistic to grieve each loss individually, or to wait for a group of skills to completely go away and grieve then? I have no idea.
I do want to let you know that I constantly am in a state of Anticipatory Grief, but I do not have the anxiety that is normally associated with that. I have, thankfully, found a good balance between the future and the present. I choose very much to stay in the present trying not to anticipate what is to come. I do my best to practice mindfulness through meditation and healthy thoughts. I allow myself the feel all the feelings I am going through, acknowledging them and letting my family know just whats going on, it helps so much. My anticipation comes from subtle changes…..they all lead to other things, bigger things. That’s hard to shake.
I can only suggest that we all, those who are diagnosed and still recognized to be “of sound mind“, “still able to function” to coin a phase (arrgh) (that honestly is overused in my opinion) are in this perpetual state of grief. I would also suggest that this constant and ongoing “state” may not be recognized in your loved one, or yourself, as we, they, just keep going. We are amazing, yes we are.
Laughter and humor eases the tension, but in reality, I am losing so much of myself. That is the stark reality I face.
So in the pretense of grief, I’m enveloped by it and have been for a very long time. In reality, it is an intense and damaging thing that I find when I think about it, and it can be overwhelming. But I, with all honesty, am doing quite well, at least I think that, and I know that’s important. However, it can loom heavy no matter the way I twist it…..somewhere way in the back, behind a closed door that I do not dare open fully, only peek into once in a while; its a picture I choose not to look at, not right now.
The first stage of grief, I guess happened, at the first MRI results I received (2015) I formed a change in my life denying the results, almost eliminating them form existence. Denial.
Anger. It happened in tandem with denial. I absorbed myself in a new career. I remained in denial and anger; really didn’t visit my doctor for nearly 2 years, angry that she had no more information for me, no real follow-up, no real care……like it was normal, this kind of shit happened to so many people, its no big deal. I hated that time in my life. I just said ” fuck it” . I took on the “mood” of my doctor and sluffed it off, took an opportunity to dive into a new career, a new “life”, moved away, isolated myself from family and friends, all the time burning inside with anger & denial; unanswered questions, that made even me more angry, I just stayed so very angry inside trying hard not to show it on the outside, but I couldn’t hide it; it leaked out of me like a nasty smell, like the one you blame on a dog, everyone knows the truth, you are not the same. I was in denial and angry and now I was trying to bargain my way out of it. Overwhelmed, alone, and angry. So awful.
Bargaining. WOW! did I bargain. I bargained with excuses, I bargained with reason. I made excuses that bargained reasons for my ever-changing self. This stage was exhausting, both mentally and physically.
Sadness. This happened during the time away from my family, I had moved to another city for my job. It happened as all the first 3 stages joined together in a internal explosion. Even though a confirmed diagnosis had not yet been rendered I knew what was happening. I was so messed up. Being alone allowed the first 3 stages to culminate; join forces together and unleash the 4th stage of sadness, it totally render me helpless; I cried my eyes out moving into that stage of great sadness and longing. It was brutal.
Once I received and “official” I moved into stage 5, Acceptance. But with that acceptance came great relief. I had through those years remained in the crux of grief. Thankfully now, I am through the worst of it, that is how I felt.
I still move through the stages, as my body and mind changes, I lapse into small moments of grief, like when I found my small motor skill were not allowing me to do certain things, but I moved quickly through it, healthier in mind although silent and passive.
With any type of terminal diagnosis there will be all the stages, perhaps with some, as with me, they now become almost fleeting as the initial term of grief ends and acceptance of your own current life, skills and pursuit of happiness starts to kick in.
COVID19 remains a complete unknown to us all, there is no getting past that. I believe in the goodness of everyone, even those people who remain defiant ( in stage 1) of the truth of what needs to be accomplished, I believe they will come around. I have hope for that.
If you are reading this and have been recently diagnosed with Dementia, please know that the despair you may be feeling right at this moment will be made right. You can get through this. I say this with the most certainty as I have been where you are. I have met so many wonderful people who too have gone through the same funnel of pain and anguish, and are happy and as healthy as they can be, living well. It will happen.
If you are caring for someone, as always, be patient. This is a hard process to go through, being given a terminal diagnosis. My grief stages lasted for years. Its a big thing.
I do not in anyway dismiss the changes and loss happening to me. I acknowledge it but no longer grieve in the same way. I , as do so many, strive with the changes and instill new skills to live well.
There is no sugar coating this diagnosis. There is no cure. That is quite sobering and effective to our daily lives. As we, those diagnosed, go through our ever-changing daily lives, we go through it with courage, immense fortitude, ingenuity and invention. To say that we “cope” is an understatement, we strive, thrive and survive.
Grief remains within us every single day, some days small, some days big. For me, I am have an acceptance of the changes happening now and those forthcoming. I believe my perpetual state of grief actually rockets me forward in some way. It kinda lights a fire under my ass to never fall back to the more morbid stages I have previously experienced. I don’t ever want to be in that state again.
I take the loss and turn it into creative new ways of living well, some maybe even better than my life before diagnosis. I personally remain resilient, and as I said above, inventive and choose not to have my daily changes overwhelm me, I believe it has become a conscious decision and that is an impressive choice for life, especially with a damaged brain.
Next…………..
Well, I have recently become quite impressed that I can write a blog. I’m a mess of unfinished thoughts.
When I was younger, I wanted to write. I wanted to write something, anything. I guess I’m getting that done. Yeyyy ME!
How are you all holding up? I hope you are ALL safe and well. For me, my family has taken over groceries and such therefore eliminating my need to be in crowds. I am thankful. xo Video chats, phone calls, well…… it works. A great anticipation of hugs and kisses in the weeks to come is a wonderful thing to look forward to!
Isolation, for most of us living with Dementia, has been a skill we have honed over the time since, and possibly before diagnosis. WE are your “GO TO PEOPLE” if you need any advise!
During the time prior to getting a diagnosis, the time when I notice changes, the frustrating times, I began to pull back. I wrote about that before. It was a time when the changes within myself were so frustrating that I just stepped back.
My family & friends (from what I know now) became “slightly” uncomfortable with my constant absence and tiredness; but with all honestly, I was exasperated with my inability to successfully perform tasks, keep year long routines and maintain daily living as I always had. I drew back, I dropped out.
Those years ( 4 years) threw me into a turmoil of self doubt, self image loss, strange habits, odd rituals and for the first time in my life, self loathing. Even though my career was going great, I look back thinking how I changed from a career fully populated with people, happy faces, constant human physical interaction and connectivity, to a career working independent, very little human to human physical contact, smiling faces and general chit chat. It was like my mind and body geared me up for the future, all unbeknownst to my outward self.
Anyway……. the whole self isolation thing, I got that covered! Most of us do. It is an odd state of affairs that once a family member, friend or co-worker are diagnosed with one of the many forms of Dementia, that person is no longer a big part of the connectivity that allows you to continue to flourish as a human being; did you know, Dementia is not catchy, its not like chicken-pox.
The devastating effects of this terminal illness are broadcast in details of despair, diaper changing and the distinct ability not to be able to take of oneself. Seen as “old people disease”. Well that’s not so true.
I was 54 when diagnosed. I was certainly NOT “old”. However, in the eyes of the public, through the vast reporting of media and the stories of dismay, my diagnosis perpetuated on multiple levels, as with many, social distancing before it was a thing.
My self imposed isolation started out of sheer frustration, the inability to answer either myself or through professionals like Doctors what the hell is going on with me, small things and large. We, I, many of us, didn’t mean to drop out; we, I, many of us, just needed to protect ourselves, our sanity and or humanity.
Now, in this time of imposed isolation, our society of younger aged, Dementia diagnosed, living well people are successfully navigating this epidemic. (Standing ovation inserted right here!)
Look, this is hard for everyone. My point is, take it in stride. Stop looking at what you “think” you are missing, but take a clear look at what is right in front of you, the company you are keeping today……family.
You are currently surrounded by the ones you love the most in the world, that is far from being bad. Discover what you have forgotten about your partner. Sit with your kids and really have a chat. Grow a flower, build a garden. Renew connections, those intimate ones. Love.
In my view, we have been given an opportunity to truly develop the the connections we always thought that would be there, the ones that for years have remained only on the surface of the barrel; now we can dig deep, we have the time and we should all try to understand the importance of that.
“Social Isolation” is a mindset no matter how you end up being in that lifestyle. Any lifestyle change is a grounded dedication to your inner-self to adapt to the changes, either sanctioned or by choice ( like diet and good eating, physical exercise for weight loss and muscle building) and is good for you, your family and friends.
Having the opportunity to save a life is a wonder thing. In the words of Spiderman, ” With great power comes great responsibility, use it well.”
Next…….
I want to just say thank you to all of you. Thank you for reading my stories. Thank you for being there. This journey is and has been hard at times, so I just wanted you all to know that it means alot that I have so many people, lovely, caring people, encouraging me and sending good vibes.
I have a Facebook page, you are welcome to join it . I often post other interesting things, happy comments and updates. I will happily respond to any questions you may have, comments you provide or laughter you share. I appreciate you, everyone who has continued to read and even share my stories. Here is the link to join my FB page. No pressure, its just available if you ever want to connect to it. https://www.facebook.com/lylljt
There are so many other ways to connect. A great fiend, Christine, has a blog, she too has been diagnosed with Dementia, and has been living well for more than 5 years with this disease, her FB page is Chrissy’s Journey, https://www.facebook.com/groups/379774099053632, I’m certain she would be happy to have you with her. Christine has been an advocate for Dementia for many years and has had her voice, story and dedication heard all over the world. Christine brings you into her personal world in dealing with Dementia, no holds barred, and that’s what I love.
Kate has been pivotal part in ensuring, defining and guaranteeing the rights of those living with Dementia. Her Organization remains on the forefront and on the global stage for Dementia, a forthright & peak organization representing people with Dementia. Kate”s writing too, is from first hand accounts living with Dementia; her writing is compelling and at times, thankfully, in your face. I love her for never mixing words, telling the truth, and doing it all with love and compassion.
Cheers! to my friends and all those who continue to provide all of us with encouragement, fearlessness, ability and voice. I will add, in later bloggy thing entries, the other authors I follow once I have their approval to do so. Stay tuned!
Segue……………………
Whoa! I had THE MOST amazing experience EVER! April 4th was a global meditation and I participated. It was so cool.
I was at home, all by myself, @ 10:45pm, sitting on my floor meditating, with a few million people all over the world, doing all we can through thought and vibration to help heal this crazy world.
Now, I understand that this concept might just be far fetched for some, I mean, a global meditation? Are you kidding me? Well, nope! To me, it meant the possibility of healing, and to be possible, it means it could be.
Throughout my life I have believed in the “possible”. There have been times when I could not see what was “possible”, but I always found my way there. I have faced great adversity in my life, some times so adverse that I can still not talk about those things, but I found it “possible” to get through them.
If it is “possible” to help heal this world, keep my family and friends safe and well, to add to the innate vibration we hold as being vibrant, living humans on this little blue planet, I am happy to participate in that “possibility”.
I hope you felt the good vibes I sent out, the millions of people who joined together to promote and spread healing and increase the energetic vibration of the world. It was a fantastic experience!
I hope ALL of you reading this, your family, friends and neighbors are staying well. Hoping you are all self isolating, staying safe and stay well.
Just a note: I have attempted writing an entry at least once every day for the last 15 days. Everyday I have lost my train of thought OR rather, my interest in the subject I’ve wanted to write about scattered specifically due to volume of change happening in our world and communities AND I’ve been lost in time and space awaiting my own personal healing from the nerve pain I’ve been dealing with. Today however, I’ll try to just keep writing. I’ve been on a swing of short focus, but its coming together.
The world is currently united in healing. ( that’s my perspective) In the recent ( say 100 yrs for example), this has never been the case. It is my hope that in some way, we, all of us, come together – unite – understand that the past divisions of this world can no longer stand in the way of healing.
A shared knowledge towards healing can hopefully pass from country to country, region to region. In my humble opinion, we can possibly heal more than our bodies.
Those whom are most susceptible to this pandemic, such as myself and the numerous others living with compromising illness’, often live in lives of self isolation; the reason are numerous. Care for each person varies.
With Dementia in all forms, our brain is under attach everyday. Due to the fact that the brain remains the “command center” for the entire body, it must be taken into immediate consideration that the immune system is in grave distress. Compromised Immune System, this is us.
Life as we know it has changed, for all of us. Stay safe and in a sense , be selfish. Be absolutely selfish in the protection you now maintain for your individual health and well being.. Be selfish until you can safely choose not to be. We all have so much living to do.
Next…….
I have 6 pairs of scissors. SIX.
I realized earlier today I’ve been packing for over a month. Dementia at its finest ! hahahahah!
I’m still not done. But honestly it’s been a very happy time for me. I have been sleeping very well, my pain is gone, and I am just puttering through packing.
I move things around, regrouping them and sorting; but mostly, I am throwing things out.
Its been wonderful to see old memories, to see things I thought I would keep you know, for future use, but honestly, I’ll never use them, neither will my daughter or son-in-law.
I accomplish what I want in a day; in the big picture, I accomplish alot for a person with hindered executive functionality.
I just find it weird that I have 6 pairs of scissors, I never knew I had so many pairs.
Segue…….
I am now on season 3 of Breaking Bad. I binge watched it over 2 days ( on my computer, on Netflix) L.O.L. I’ve never watched it before. I’ve also never watched Game of Thrones. I think I’m just watching it cause, well, I packed all my creative stuff and books and I was hoping it would be good. I find it mediocre at best. I’m pretty sure my dementia mind has schmooshed it all together into a jumble of spotted images. I am still not clear on the “greatness” of the show.
Every episode is the two main characters getting mad at each other, seeking revenge on each other, then making Meth. Why am I watching this? Arrrrgh! My dementia mind is obviously wavering…………..or I’m bored after my packing and sorting adventures.
I stopped watching television over 17 years ago. ( 2002) I couldn’t stand the way TV was going. Surreal and unrealistic story lines and “fantasy” worlds removing the essence of real life, news reels of nothing but horrific events…… things had become so ugly. That is how I felt, so I gave it up. It was just one thing, one silly thing, but it was a catalyst. So weird.
During that time though, I was going through many changes. I needed to focus on my life and TV was a distraction from that. I endured harsh realities of the state of my life and I needed to change that, even if changing it was a long and brutal road.
I was married briefly at the time. I was only married once, I was 32 years old when I made that choice; I’m still not even sure why I got married. My daughter and I had a great life, my career was in good stride. No idea why I went left instead of right. My stepdad even whispered in my ear as he was walking me down the isle, “Janet, my car is parked just outside, at the side of the building……we can just turn around and get in it” ….. I should have listened to that wonderful, wonderful man, I miss you John. While I was married, I found out I had cancer, and in turn, found out the man I was married to was an abuser. Of course there were red flags, but I handled it through my treatment and recovery. I never ignored the habits of that abuser, I monitored them. Then one day I just said ” I’m leaving on Saturday, you can either stay and pack the truck with me or you can leave for the day. Either way, I’m leaving.”
We had gotten married in April of 1996, I left with my daughter in 2002. My daughter and I had talked about those years yesterday……. as we sat looking at our families new home, from her car. Its almost done.
To this day, I still don’t own a TV. Even the one I bought 10 years ago just sat in my livingroom, yearning to be turned on….it went to a good family.
I’ve never looked back in my life, but I have reminisced both the good and the bad. I’ve had WAY more good times than bad, more years of happiness than turmoil. I’ve been happy.
The “set-backs” , hell……. I got through them. They are nothing more than a memory.
For me, the “memories” of those days being married will fade, as will most things. I spoke with my daughter about those years yesterday to hopefully let the memories fade with the words, to say the words out loud just to kill them.
It may have helped, I hope it did.
So tonight, since I’ve finally finished a blurb for my blog, I’ve sorted and packed and trashed, I decided I’ll probably never watch the next episode, But you won’t believe this! I just now realized something……..
Remember I wrote about how long it took me to hang my curtains? Well, I took down the last set today and washed them. NOW I have to follow through and hang something in place of them……..I washed them at 10 am this morning, its now almost 8 pm…… the saga returns.
Moving day is in about 6 weeks or so. I am very excited! I’ve been to see the progress on the house and its quite spectacular! I cannot believe its moving as fast as it is. One time with my daughter, we were actually able to walk through the house, it was awesome.
My grand-kids, LOVE them. we’ve done a lot of crazy things over the years. I’ve been thinking though…….all those crazy thing were always done at my house, Grammies house. I think I need to change my strategy now that we will all be living together. “What happens at Grammies stays at Grammies” will not apply in the same way…………hahahahahahahah!
Next…….
Happy Days! I now have an Occupational Therapist and Physio Therapist coming to my home to help with mobility and things I need for safety. They will be coming to my house so I don’t have to travel.
Believe me, I do my best to keep active; with the better weather I’ve been able to have short walks without the fear of pain; been able to walk the grocery store with my daughter, but I’m eternally grateful for the additional assistance and guidance from professionals.
Very grateful !
Throughout the last year, so many things have changed. Through those changes I have done my best to remain positive, and for the most part I have been quite successful. The thought of the possibility of needing ongoing assistance for a simple thing like walking or getting out of bed has weighed heavy on me. The addition of medication has absolutely been a great help but I still feel the weight of this disease underneath.
Living well with Early Onset is something I have always set my mind on. Believe me , I had no idea what was to come and certainly did NOT expect to have pain; I actually did not know at the beginning of this journey that pain would be a possible part of my journey.
I took time off from writing my bloggy thing as I felt my words would just reflect the defeated rhythm I was feeling and that was not what I set out to do with my writing.
It is my hope that the blurbs that I share with all of you give you insight, breed compassion, and also bring an understanding that this disease, this “lifestyle” that all those living with Early Onset Alzheimer’s is more than just memory.
It is a “lifestyle” of daily adjustments, ever-changing daily routines, sometimes physical pain and a very real possibility of depression, angst or even suicidal thoughts. The struggle is real for all of us. BUT don’t forget there is also extreme HAPPINESS.
No matter the path your life takes, you adjust………you learn the ways of your life and you find the strength to endure those things that in one moment can take your breath away.
If I had ever given into the things that shattered my life path, I would not be writing this for you to read. Flexibility, adaptability, and acceptance of change is what allows you to succeed in life. My life has certainly had those “shattering” moments, but I got through them; we all get through them. I’ve made it through 55 years of this crazy life, I’m not stopping now!
I’ll maintain my foothold on living well, move over, this bump that’s been in my road and kick some ass.
Segue……..
Saturday, starting a new project. Hahahahha! You see I got this bed frame. It has fabric on it that I thought was grey/blue. It is more blue than grey. Not really what I wanted.
I have a Chez Lounge that I picked up at a flea market last year and reupholstered it with a plush (expensive, but i loved it) beautiful steel grey fabric.
The Chez is just not going to fit into my new place, so I’m totally willing to throw it out BUT NOT THE FABRIC. I had also redone underside in a stunning reddish-purple fabric so the whole Chez looked like a Prada Shoe.
Anyway, I’m stripping the Chez of its fabric and batting, redoing my headboard with the grey, lining drawers with the Prada red fabric. Its my last project before I move. I finished the Seahorse dresser. I will post a pic on my Facebook page.
I’ve been struggling with this for a few years, even prior to my diagnosis. I know I’ve written a bit about that before, but today I was TRIUMPHANT!
I woke up , my usual 3 am-ish time, made a coffee and started packing. Before I knew it I had 6 boxes packed, my kitchen cupboards empty (except what I will need for the weeks to come), Labeled boxes and organized a whole pile of other things.
THAT is what I was supposed to be doing!
For me, this is a complete WIN! Having your days filled with good intent and then finding, hours later……like when you crawl into bed……….you completely missed doing all the things you had set out to do in your day. Today was not like that. Feelin’ good.
Living with this disease can be so absolutely frustrating. You set out to do so much and rarely accomplish it, often having days of asking yourself “why?????”. I stopped beating myself up about it quite some time ago and just let things happen. Today, as normal as it may seem for healthy brain people, is a SUPER accomplishment for me being able to follow the process of setting out and accomplishing the things I wanted to do. ( insert pat on back here)
Packing and all the things that go with it is a hard thing at this time in my life. Trimming down my possessions is even harder. I am trying to keep in mind it will be best. you know, for later. What is wonderful, is finding all the memories. I have an old sea chest, I bought it years ago at an auction house. My daughter says it was the one thing she always remembers having as she grew up, im putting all my memories in there for her.
Next……
Just a note. I had to re-read this and my last blog post like 5 times. I missed words. It took me by surprise.
Usually, well, since I started writing these posts, I have just re-read it once, no issue, no errors. Hmmmmm, 30 days not writing a blog and this is the new me? Change happens rather quickly these days.
Today and my last post, I just kept finding all these missing words. Words I thought I had written, TYPED> feeling a bit uneasy about that. I re-read my first few paragraphs in this entry and found I just completely left out words. Its so weird. As I told you before, my daughter says my conversations are sometimes only in my head, I start in the middle of a thought, completely unrelated to what we are talking about. Maybe its connected. Also, words …..when i look at some of them, they look odd. Like they are not spelt right but they are through spellcheck. So weird. Temporal Lobe issues, they are growing.
Anyway, if I miss something, just try to imaging, figure out, how the sentence should go, what I was trying to say i guess. Oppps! in advance. LOL
Segue…..
so for today, I am successfully doing what I should be doing. NOt all days are like that. But I endure, as most of us do. My only dilemma…… why did I stop packing to write this. Hahahahah!
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