This saying really struck a chord with me today, this morning. Yesterday as I was taking Pheobe for her little drive, one we have been doing many times for many years, I had to stop because I realized that things didn’t look. Familiar, and they should, it was startling, it also made me pause to think about the day before I walked by a couple people who were sitting on a bench, they didn’t seem familiar either, but as I went by, they called out to me, by my name, asking how I was that it was nice to see me, I have no idea who it was, they seemed familiar, but I could not connect them to anything that would or could help me know how or why I know them. One more thing of many happening
So seeing this message along with another that was in my in box this morning, had me doing what I’ve been doing a lot of the last few days. Looking within, re-evaluating how much I can still manage and do, and how much do I want to do.
I have tried really hard to be a good and strong voice advocating for others, to help lift others up, to be a good mentor. I hope in some small way it has helped. It sometimes we have to look at ourselves and we have to do a self review. It’s a hard thing to do when you’re wanting to still try to do much, but it’s important.
It is also important because living with a terminal and progressive illness there comes a time when as much as you want to do so much to help others, you have to start looking at what you are doing for yourself. I have due to the pandemic lost over a year of being able to try to do some of the things I wanted to, it will likely hit two years before that will change much. It’s been hard on me, harder than I normally talk about it’s getting harder, especially with more changes happening. So it is time I put myself back into the equation. What do I need/ want for what’s left for me, and can I find a way to merge the two, or is it time for me to quietly slip off into the distance. There is much for me to contemplate, but it will ultimately have to be whatever I feel is going to allow me to continue to having my peace and joy each day, and lately it feels like there is to much weighing to heavy.
I feel like I’m frozen, stuck, unable to put thoughts into action, thought yesterday was Sunday, it was Wednesday. Not navigating things, having the thoughts but unable to put the pieces into place to actual turn the thought into actions or into tasks being done. Swirling about, feeling like I am being ineffective, unproductive, not being able to start or complete anything, the executive function part of my brain seems to be stalled at the moment, organizational skills have disappeared. Strangely the thoughts are all there but the ability to do is missing. Sure makes me appreciate those days of clarity, those days of doing things as I would have in the past. It erodes your confidence, your self esteem, these are the hard bits, the bits we often don’t talk about, the hard stuff, the changes we feel, others may not notice, but we do, sometimes these are blips, they come and go, just like the blood flow is at times good, somedays the function is good sometimes not, this week it has been the worst it has ever been. I am still considered to be doing well and managing well, but I can tell you this stuff is hard, it erodes and eats away at the very core of who we are. I know many who are having changes in their abilities at this time, I wondered how much of it may be from a delay of some sort of the effects of covid, of our worlds changing so much in how we do things, or did things, our isolation, many areas coming out of lockdowns, others deeply entrenched in them still. Although for many pieces and parts for those with dementia we have been living a life of more isolation since diagnosis but that was truly and is in fact much more so since covid, yes we used zoom etc long before most, but other areas of our lives have been greatly impacted, and sometimes I think we have not acknowledged that to the point we should. I have been working hard trying to make a difference for others living with dementia, advocating, doing all I can, but in all honesty, and if I’m honest, I don’t know how much more of the fight I have in me before I just want to withdraw and stop all of it. It’s getting harder and harder, and when little ever changes, seeing some kind of tangible change would likely give many of us a much needed boost to keep going to keep fighting. It’s doubly hard when part of your brain has all the thoughts of what you want to do and the other part wouldn’t unlock enough to allow you to actually do them, it’s exhausting. Or maybe it’s just this new piece of abilities changing and disappearing that I need to settle into, I’m not sure at the moment, my mind is like a bouncing ball these days, thoughts bouncing around, nothing ever coming of them, I hate feeling so unproductive. They say growing old isn’t for sissies, I can tell you living with dementia will test you unlike anything else, battling ones own mind, then battling all the compounding medical challenges that present. If I was able I would be somewhere near the ocean right know until all that is going on in this brain and body came to a new understanding with itself.
My heart has been heavy, my soul weary, when I feel this way, when I feel like there is so much that needs to happen, so much needs to be done, yet not enough of us to carry the load, I know it’s time for me to go to that place where I can reground. So after a busy day with multiple meetings yesterday, wondering how much gas I have left in the tank, already having scaled back, yet somehow still determined to do more, at 930 this morning, with my little dog in tow, a picnic packed, I’m pretty self sufficient, off to the woods we went. it was the perfect day, the warmest day we have had, that glorious day that the chill has finally left the breeze, the sun on your skin, warms you, it embraces you, it gives you that hug that for so so long because of covid, you’ve lacked. Somehow it it melts away the heaviness, the tiredness, and you can feel yourself start to breathe. You can here the wind as comes up the valley, it’s so good to hear nothing but the stillness, the wind, the hawk overhead, not a car, no one talking, a chipmunk chattering, the leaves rustling. The crunch of the ground below us as we explore around, gathering wood for a small fire, the crackle of the fire, the air felt so renewing. I have watched over the last six months so many of us with dementia all feeling changes in ourselves, why so many of us, so seemingly simultaneously, has the underlying stress of covid had a bigger impact than we think or realize? Have we been feeling the effects of further isolation, further challenges to stay involved and connected? Many of us actually ended up busier, for most switching to online meetings has allowed more to be asked of us. Has all of the stress of trying to manage all of this all the while trying to just manage our day to day life during covid pandemic with a vastly misunderstood illness. I’ve had so many conversations, lately, I feel the strain, I hear the angst, I hear the wanting to do more but not managing it, then feeling bad it’s a terrible place for them to be. I feel much the same way, the last year has seen my health take to many hits, too many hospitalizations, everything I do is harder, takes longer, and often just simply doesn’t happen. So my happy place out in the woods, is where I go to recharge, to let my soul breathe, it’s what we all must do, find that place, if it’s the garden, standing in a steaming shower, shutting everything out and singing as loudly as you can. Do it, and reach out for those all important chats with a friend, share the fears, the tears, so the laughter can find its way again, we are normally ( at least those of us that I know) , who live with dementia are jovial and happy lot, but we get weary to, w e may be warriors, but every once in a while we need to take our cape off. I stayed out in the woods not getting home till just before five, I refilled, recharged, shut the world off. It was good for me, I will need to do more of it in order to maintain doing all the things I want to do. Supporting one another is vital, being compassionate understanding, encouraging each other to do things that require are good for us, even if it means we have to miss something along the way, looking out for each other. We are all tired, we are weary, we are so appreciative of those who help us, for without them the toll we are all feeling would likely be much more. I hope when this is all over we all get to reconnect, missing the conference in Singapore meant that much needed and important fac3 to face connections we get have been lacking. But after spending the day out in the woods, with Mother Nature I am reminded that their is a time of renewal, that everything has a cycle, spring evolves, hopeful for us all.
Last night was a night of night terrors, they are awful when they come, you can’t escape them, you can’t shake them. You can’t figure out if you’re dreaming or if it’s all real. I have been lucky to not have these night terrors often, but when they do, they level me.
Finally at 415 this morning, I caught up turned all the lights on and made coffee, sitting in my bed trying to shake this feeling of horror that had held me captive for most of then night.
I’m exhausted, physically, mentally and emotionally today, wondering if watching the movie ” The Father”, and all the emotional elements it brought out in me at something to do with the re-visit of the night terrors. You try so hard to wake yourself from them, but you can’t, it has a hold of you, like something else or someone else has taken over your brain, its one of the worst feelings I’ve experienced. I know others who have dementia who have to deal with these terrors a lot of the time, my heart breaks for them, for this is nothing that can be made any less than how awful it truly is. Sometimes people call the hallucinations because they are so real, I call them terrors because thats what it feels like being terrorized all night long. So today is about breathing, breathing in breathing out, let it go, waiting for it to be shaken from my being.
I almost feel like I should put out a caution to anyone who has dementia about seeing the movie, on the one hand its important we see and ensure as best we can how we are depicted, because if its not accurate we need to sound the alarm. On the other hand if it brings such an emotional response that you end up having night terrors or hallucinations or an unexpected hard emotional response is it worth it? I can’t answer that, but I am convinced that the response I had surfaced last night in the form of night terrors. I can’t help but think that if someone had try to bring me out of it, I may have hurt them. That is a hard acknowledgment, but it is the honest one. I missed our Sunday Living Alone meeting today, I was all set to go, but because of how I felt after the night I had, I thought better of it. Maybe next week.
Today I am listening to music and soothing my soul, that feels very battered and bruised. Ebb and Flow, Ebb and Flow, waiting for the seas of my soul to be still again.
how my brain feels at times, like the battery is to low.
Today I have felt a little rattled or unearthed or I don’t even know how to describe it. I watched the movie “The Father” last night with Anthony Hopkins I’ve always loved his acting. Somehow even though I knew this was about someone living with dementia it rattled me. Most movies I have seen in the past that are or that try to depict life with dementia have left me feeling saddened by the fact that it was always coming from the point of view of someone else instead of the person with Dementia.
But this time I was shaken to the core at times Anthony Hopkins depicted so many times what I saw in people when I worked in dementia care and now what I see in myself at times. In fact yesterday was one of those days for me where I had a good day I had a nice bike ride I was functioning for the most part very well except I could not orientate myself to the day how we got to the day like Anthony Hopkins with his watch, I was consumed by the fact that it was Friday and I have no idea how it became to be Friday I was convinced that it could not be Friday, these are the things that no one sees those are the pieces that unless you, spend a lot of time with me, or stay with me for an extended amount of time, you will question my diagnosis. The parts where it was nighttime, he thought it was morning, no concept of time anymore, another of my realities, for as fast as I may do something or think I’ve done something in a day I have forgotten and suddenly it’s nighttime and I have no idea how that came to be. Watching him struggle with understanding something was wrong, yet still feeling like everything around him was wrong, because from his view he was still fine.
It’s brought into sharp focus my own thoughts and feelings, it’s made me do a check in with myself, ask myself some hard questions. I cried today for all the losses I have felt during my time since being diagnosed. Not feeling sorry for myself just reflecting on how much my life has changed. I also laughed today about all my “squirrel moments”, I have know, and the laughter that our squirrel moments have created for my friend Janet ( Janet also has dementia), was the one that taught me that I was in fact having squirrel moments. We share our squirrel moments with each other, she lives on the other side of the country, but video calls back and forth keep us rolling along. Squirrel moments would drive most listening to us or watching us crazy, but for us it’s survival, those moments happen because if something comes into our mind, we must say, do it, tend to it, or whatever right then or it’s lost. It’s like Antony Hopkins and his watch. He has to find and put on his watch, when it’s there for him that’s it’s missing. Watching this movie was not bad for me, it has also made me extremely grateful for all that I am still doing and managing. It has made me spend the day thinking about with so many changes over the last year, that doing a check in with myself is actually a good thing, another list for my doctors, my last hospital stay already brought in occupational therapists and community transition liaisons, so doing the check in allows me to stay proactive with my care, and my wants and needs. I’m becoming more and more isolated, and I must pay special attention to that, during this pandemic makes it harder to manage, but I for sure am grateful to those who are staying connected with me through phone calls, video calls, or I would/ will lose more of the abilities to manage socially. Antony Hopkins also depicts very well things like the loss of control, over wanting to have say about what’s happening to him.
Oh yes this movie definitely stirred a lot of emotions, and just like this snoopy cartoon depicts, I must keep swimming. We all of us living must keep swimming and at times it feels like we are swimming against the current, and someday the tide will be to strong and take us down, but until that day comes we must keep swimming.
There are times, there are moments that stop you in your tracks. That was me at the start of this week, you know when your doctor calls you for an in-person visit when they are doing phone visits these days, things are somehow going to be different. You try to brace yourself, you try to convince yourself that it’s nothing to be concerned about. Yet somehow you know, you feel it in your gut, you know your doctor, you know, you just know.
So the first thing you see is the letter from the specialist that starts with the words, this is a situation where it is better to be lucky than good….and you know, beyond the good the bad will be coming, and he goes on to say that he is happy with how my cpap is maintaining me through the night. Yup, that’s the good news, the silver lining, ok well it’s something. Then comes the “regarding her remaining complicated medical issues.”
Some things were not surprising to me, and knowing all the difficulties these last ten or eleven months have presented me with, I knew in myself that there have been significant changes. Yet somehow and I don’t know if it’s just me or others with dementia, I have lived with this sort of ideal that I have been doing fairly well especially being that I am now moving into my 7th year since diagnosis, so knowing they said 3 to 8 years, but fully believing I could give myself a lot more and maybe I somehow can still have a few more. Add in the new piece regarding my lungs and repiratory issues that have been a challenge since March, upgraded to severe, shit, you can’t figure out how or why, when you have worked so hard at exercise, nutrition, all the things your supposed to do. The inflammation componenant that has been so worrisome, and there it is, Myositic syndrome, this rare, sometimes, you just feel like someone let the wrecking ball loose on you.
For all the research for all I have done, it is yet another little known component that can be part of vascular dementia. It is why I have the fatigue, why my lungs, my vocal abilities, my issue with my arm, the intermittent rash on my face and the muscle issues everywhere in my system. I didn’t see it coming, somehow, I felt like I would just somehow through all the hard work get back to feeling like I was managing with my dementia very well. And then the change in my prognosis comes, even though dementia is a terminal illness, I was considered stable within those parameters, in other words doing well. That has now changed from stable to ” very guarded”, there really is no words needed to say what that means or says. Yup the wrecking ball hit full on.
Physiotherapy is a must, my walking coach is a must, many more bits and pieces have to be looked at now. It’s very difficult because the specialist says my body is ageing prematurely, is it dementia driving it or all the other complicating bits, the truth is we will likely never know, and how quickly it will age is unknown but the last year’s setbacks have not been a good indication. Sometimes the pain is unbearable, but I soldier on. There are no magic pills or potions. The hardest part is on the outside you don’t see it, I still look ok, so people disbelieve you, it is hurtful. The invisibility is at times welcomed at others not, especially when you know people whisper and talk behind your back, because you don’t look like you have dementia or any of the other devastation and destruction that is going on inside your body.
My quality of life is starting to be impacted more and more each day. But I believe with my strong will and attitude, I will learn to live with for as long as I’m given to do that. That I will continue to advocate for others, so that after I am gone, maybe someone else won’t’ have to deal with some of that stigma. I am writing about this deeply personal new chapter, not because I want or need anything, but so that maybe just maybe it will help others to see that you can’t always see the many many layers of things that people living with Dementia deal with, we not only have to deal with learning to live with our dementia, but we still have all the other curve balls life throws at us. So maybe just maybe this will help others see that judging because someone looks ok, is not ok.
But right now, I am mourning, yes mourning, it’s a huge loss, its a lot, it another part of me that I am losing. People often overlook the losses faced with Dementia, they add up and they can have a very real and negative impact on our overall well being and quality of life if we don’t acknowledge them, this is a case where I must take the time to allow myself to be sad, to feel the fear, and the agony of facing another huge hit. I will try to take that time so that I can get back to striving to have the best quality of life I can in any way I can.
I actually thought I had written this blog, but apparently I wrote it in my mind but not on paper. I didn’t realize that until this morning settling with my first coffee of the day I thought I would check it before hitting the post button. Except it wasn’t there, it was all formulated in my brain, but the action to actually write it didn’t connect, this is Dementia at work. Thankfully for some strange reason, my brain has decided to hang onto it so it ends up here.
It’s a quiet time, it’s Christmas Eve, tonight I will make my little turkey dinner for my little dog and I, I grew where Christmas tradition saw us have our dinner, open gifts, and then off to church, we never had Christmas Stockings we had Christmas plates, by our beds that were filled with candies, oranges and little baked treats. Christmas Day was for sleeping in, relaxing, tobogganing, playing in the snow. So I will have my Christmas tonight.
I have been blessed with people dropping off baked goods, vegetables, and gift bags and baskets, I’m grateful to all those who thought to remember that I’m alone at Christmas ( not because of the pandemic ),just because I am alone, its nice to be thought of, and although its just drive by drop offs just seeing your faces for a few minutes lifts the spirit, you have all touched my heart with your thoughtfulness. If it was possible I would have you all here for coffee to help me eat all these beautiful baked goods.
Healthwise, as most know I’ve really had challenges since March, and not with my Dementia, although my last testing was not great, It showed my recall has gotten significantly worse, short term memory is worse, but I’m still managing quite well, you become good at adapting and learning new ways to manage the shortcomings.
My other health challenges that began in March, have brought us to now., a call from My Doctor on Tuesday afternoon, all my inflammation markers are high, they know I don’t have an infection or any kind of virus, something triggered my immune system to start fighting in March, it’s like it’s supercharged, they know this is an autoimmune issue, they believe my vocal abilities and my decreased lung capacity are all connected to this, my fatigue, and the list goes on. So the specialist will help unravel it all to see if and what we can do, the problem is much of the medications to help with autoimmune don’t play nice with my dementia meds, so some very carefully weighed out decisions may have to be made. I wrestle with it, I really hope to get some of my physical abilities back, at least somewhat, but if it means losing more of my cognitive abilities quicker I’m not sure.
So Tuesday afternoon I took an “ I feel defeated“ day, I cried, I felt sadness I wondered if this is worth the continued fight. I and we people living with dementia are super-warriors, yes, but we are at the same time, not superheroes, we are still humans with all the normal reactions to abnormal events, we still feel sadness, loss, fear, along with happiness and joy. We have the same ups and downs like everyone else. Sometimes we have to quit fighting and say ” today I just want to feel bad, and sad and mourn for all that is happening,” this does not make us weak, this makes us human, yup we have not lost that. So I took a half-day to feel it, to wonder and question myself as to why I keep fighting, too which I don’t have the answer to except that there are still things I want to do and accomplish despite my complex health challenges.
So I slept for 14 hours, after which I got busy figuring out what in all of it I could do to try to help myself while the doctors try to do their thing. I can’t control the illness or illnesses at this point, but I can do all the things I know how to do to help my body fight. My body is carrying a lot of inflammation caused by this autoimmune piece, I have had no appetite for a long time, it’s been hard, I should be a tiny size but I’m not because of what’s going on in my body, and no appetite means it’s hard to give your body what it needs to fight. So Yesterday I set a plan in place to help my body, I have to eat one balanced meal a day, seems simple but when you zero appetite it’s harder than you think. I will have to prepare and make that meal, which on bad days is difficult because of my fatigue, and my dementia so I have set reminders on my Alexa so that at five pm every day it will remind me to sit down and eat. It will be a self-prescribed force feed, but it has to happen.
I will be continuing to work with my physiotherapist Kathy to help keep me mobile, Kathy has been a godsend to me and has become an integral part of my health team, as well I will continue to work with Lise Halverson, Lise owns Noodle Legs.ca, the company is new to Vernon, I started going to her osteo fit class this fall, she has regular classes as well as classes specifically for people with dementia. She has been a tremendous support and helps me, currently because the doctors don’t want me pushing but want me to do small amounts we are working outdoors social distancing of course. We use activator walking poles which were designed by Occupational Therapists at the women’s hospital in Vancouver, they are different than regular walking poles as they give you a whole-body workout. So if I can do 15 minutes that’s what we do, it’s slow steady at this point, a hard pill for me to swallow to go from walking 8/10 miles a day to a block or two, but hopefully, by spring, I will be well on my way again.
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We are lucky to have this company here, their program is designed by the women’s health hospital, and I think many can benefit, especially as we age and balance and coordination, etc become something we need to pay attention to.
It’s a fine balance to try to keep moving without depleting my body and ending up in bed for days, but I continue to try with the support systems I am fortunate to have. It is also possible that this is just part and parcel of my dementia, vascular dementia has a huge component that affects the immune system, they are and can be quite intertwined so it becomes quite complex. People tend to think dementia is just about memory loss but it is about so so much more and affects so many of our body systems. I’m grateful to those who help me in the fight to maintain as best I can, and to those who understand my need to have normal reactions at times to abnormal events.
The New Year will hopefully have more answers than questions, but I have learned that the complexity of my dementia, means that it challenges even the doctors, but I am grateful that they continue to try to help me have the best quality of life I can, and if at the end of the day this becomes another new normal I too will learn to manage that.
In the meantime, I will be grateful that I am here for another Christmas Eve, life is fleeting it’s best to always be mindful of that and be grateful for what we are given.
Wishing everyone a pleasant and peaceful Christmas Eve.
It’s a strange one for sure, the day has been relatively quiet, a very simple day, nothing stressful, other than time going by at break neck speed.
It’s 10 p.m., I’ve been in bed since about 645, was having a great sleep, when suddenly I awoke with a real jolt, because what the heck was that, it can’t be, I could smell such a strong smell of roast beef, like it was just out of the oven smell of roast beef. But wait a minute, my sense of smell and my sense of smell have been gone for more months than I can actually remember, but I smell roast beef, I sit in bed for ten or fifteen minutes trying to figure out if I’m dreaming, or if I’m actually smelling roast beef.
It has me standing in the middle of my living/ dining area trying to figure out where this strong smell of roast beef is coming from, and know I’m thinking oh my how I would love a roast beef sandwich, except it’s 10 o’clock at night, no ones cooking roast beef least of all at my house but the aroma is still here.
I am completely baffled, now the dog is up looking at me wondering what the heck am I doing and can we please go back to bed look. I’m back sitting in bed still wondering if I’m actually dreaming all this or what?
I’ve decided I don’t know if this is my brain or dreams or what but I’m going to laugh about it, think to my self, wow, that roast beef smells so darn good likely the best roast beef I could imagine.
Yup this is dementia straight up at my house, asleep but awake, awake but sleeping, who knows, chalk it up to another of the many mysteries of life with dementia.
It makes me want to run around the house trying to smell things, but it’s pointless because all I can smell is the darned Roast Beef, and nope haven’t cooked one for a long time, because I know you’re wondering did I cook roast beef for dinner. I have to try to go back to sleep unless I actually am, regardless I must. Tomorrow I will be doing smell tests to see if this is just a wired set of. ??? Or if my sense of smell is coming back. I’ll tell you one thing dementia ain’t for sissies.
So on the lighter side of Dementia at least my Dementia, and I don’t write this to make light of the challenges and difficulties, but it’s important that I am able to find laughter amidst my ever-changing being.
So many changes have been occurring over the last several months some more noticeable than others. An while I have been ensuring I have projects to do and things to fill my time and engage my brain during our isolation due to the pandemic, I had thought to buy myself a jigsaw puzzle. Yes, they are good for us, no they are not a waste of time, and they bring enjoyment, however, I come to realize I don’t need to buy a jigsaw puzzle because my dementia has provided me with my own real-life jigsaw puzzle.
Yes, my life has become a never-ending jigsaw puzzle, trying every day to find the lost bits and pieces to manage through the day. In some ways it somewhat frightening, however, I instead have decided to embrace this new chapter of challenges, and fill my time each day looking for those pieces of the puzzle. This morning I was looking for the apron that I wore while cooking yesterday, I spend a couple hours trying to find it to no avail. Then I decided to look for the ziplock bags that I have not been able to find for three days, I found them while sidetracked looking for another misplaced item, there were my ziplock bags in my little cabinet that houses my linens, hmm, not sure what the thought process was to have that happen. Still did not find the apron, strange, I have two that normally hang in the same place, but nope it’s not there.
However, I decided I must know to decide to find my hair curlers, its the first day since March that I felt well enough to actually do my hair and put on full makeup, this made me very happy, its been a long haul, and hoping not to have a backward slide.
It felt good to have a day where I actually felt productive, and that I contributed to a level that I can be happy with. I take the small victories, I can no longer manage for the number of hours or at the level I did even a year ago, but I manage.
Towards the end of the day, time to put together dinner, going to take out a pot for steaming some Broccoli I was delighted to find my Apron, I laughed, a really good laugh at the silliness of things lost and found, and at how in the end the pieces of the jigsaw that is now my life find their way to be where they are meant to be.
I know its truly not a laughing matter, that it is another sign of how things are changing for me, but I chose to embrace it, laugh about it, being frustrated, and creating stress and anxiety for myself will do more harm than good, and besides while being isolated, it does keep me busy, and using my brain, in anything than normal ways.
Chrissy's Journey 