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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

Truly Honoured and More Than a Little Humbled

Charlie

Tonight this blog is being written after a friend that reached out to me and asked me if I could write a blog. This friend is one of our much beloved DAI members, who has recently endured a very deep and personal loss.

This friend is Maria Turner, I first met Maria in 2017 and then in person in 2018 in Chicago at the Alzheimer’s Disease International Convention. The friendship started before that when I first joined DAI, and after meeting in person and working with her on things like the Brain Health Hub, getting the Living Alone Group going along with others, and watching Maria flourish as an advocate.

I received a frantic video call from Maria a few nights ago, Wednesday March 16, 2021 actually, it took about 4 or 5 attempts before the call actually connected. But in that moment before we were even connected I new something was wrong. We all have people who we zoom or video call with on a somewhat regular basis, there is others that we chat with at times over messenger or texts or whats app, Maria and I were the ones who would send each other messages of inspiration etc. via messenger or texts, but we were not the ones to traditionally do video calls with, so when the call came I knew it would be of high importance.

Maria was distraught, her little Charlie was dying, it was heart wrenching. Charlie bundled in her arms, tears streaming down her face, asking me what to do. It was difficult to be thousands of miles away, I couldn’t drop the phone and run right over. Maria like me, lives alone. Charlie has been Maria’s everything, she knew I would understand without judgement, that I would just sit with her in those very difficult moments. I wouldn’t tell her what to do, or how, I would just be there, words of comfort.

In talking to Maria tonight when she asked me if I would write a blog, she said she remembers little, other than she knew she needed to talk to me, and that at one point she remembers me saying ” Maria Charlie has his wings know”, eventually she went and sat on her bed with him in her arms and talked, I just stayed with her until she was ready to let me go and asked me to call another of our members Karen Creeky Creekmore, so Karen and I messaged back and forth and then Karen spend some time with Maria, there were others of course who were a significant part of this event as it unfolded for Maria and Charlie, David, Jerry, Jamie, Laurie, and many others I can’t recall all so please don’t be offended if your are not mentioned here, I know Maria is deeply grateful to all.

Charlie was a puppy mill dog, who ended up in the shelter and was to be put down, along came Maria, with her big heart, taking Charlie out of his cage, and ending up saving him from his plight, only to find that Maria saved Charlie, and then Charlie saved Maria in some of her dark days. The two didn’t know they needed each other, but God knew and brought them together when they needed it the most. They were inseparable, Charlie going on many adventures with Maria, her sidekick, together they made it through some challenging times, and shared much love. They truly were a gift to one another.

Charlie also shared a lot of love, with everyone he met, whether in person or on zoom calls and meetings, Charlie always brightened everyones day, and brought out the smiles in us all. Charlie and Pheobe spent time on the zooms together too, they being so similar, in all they love they provided many of us.

Charlie has been a big part of Maria’s life and the life’s of those who saw Maria and Charlie together on Zooms, at her local P2P Groups, and everywhere in between. Together they have had a big impact on many. Everyone who new Charlie felt Charlie’s love. Charlie will be forever missed by many, but none more than Maria.

Charlie and Charlie’s love of Maria will always be, Maria will be forever grateful for her little bundle of love named Charlie.

This story is important because it speaks to the value and depth of friendships formed far and wide through support groups like those of DAI, and others, and how those relationships are not superficial as some might think, they are real, they have value, they bring value to each others live’s, not just on the good days, not just at the meetings, but far reaching across the miles, through laughter and tears, through the sharing of our beloved pets like Charlie but maybe more importantly on our very hard days, we connect with people at different levels and sometimes we don’t even understand that until in a moment we know who to call and why, God answers in our times of need.

I am very grateful that Maria felt comfortable in her ability to reach out in her moment of need, I’m glad she new she would receive understanding, compassion and love for her and for Charlie.

I know all of us will keep Maria in our hearts and think of Charlie and the smiles he brought us.

RIP Charlie – I know those wings will be helping you watch over Maria.

Maria and her beloved Charlie

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

The Broken Heart

Photo by Michelle Leman on Pexels.com

There are times and moments in our lives that forever are etched in our hearts and minds. There are moments that change us in ways and on levels that few understand until they walk their own journey.

It is coming up to one of the most difficult and tragic, beautiful weeks of my life, all in one week, scattered over a couple of years. Barely capturing your breath from one until the next happens. Knowing that as much as you believe in the healing powers of self care, of acceptance, of allowing yourself the right to grief, of rebuilding and recalibrating until you have forged a life that may in fact be good, may in fact be filled with many great things, there is times that take you back, to emotions, to longings to reviewing, to rethinking.

It is not about being depressed, no I am not depressed I am deeply sad, there is a difference, sometimes they are intertwined sometimes they are completely different things, in this case they are totally different things. I can say that I am deeply sad at the very deepest levels, missing some very important pieces of my life, I am allowing myself to sit in this sadness, to feel it, to think about it, all of it, to think about how it has effected me, about what parts and pieces I miss the most. I am allowing myself the time and space to feel it all to remember it all, I am giving myself space to re- emerge, feeling reenergized, reinvigorated, but I cannot get to that space without first allowing myself this space.

In a five day span, I deal with the wedding anniversary to the man, the one person, who in my life, loved me selflessly, wholly. Who accepted all the broken pieces and parts of what makes me, me and he loved me that way. He loved me deeply, he was my best friend, my confidant, his love for me knew no bounds, nothing anyone said or did could impact his pure love for me. I blossomed with his love, I lived the best parts of my life with him. I loved him as wholly as he did me, I would and did go to no ends to be there for him and with him. I love him today just as wholly today as I did when he was still here in the physical world with me. I still feel his presence often, I still know he is with me, I know with all that I am that we will be reunited when it is our time.

But even in knowing that, even having peace in the fact that he was called home far sooner than he or I could have ever anticipated, having peace in knowing I did all that I could to ensure his end of life is how he wanted it to be. Even in knowing all that, as I approach the week that is fast approaching, I settle into this profound and deep sadness. I think about all the little things I miss, the little things, no one really knows, the little things about like that one of our favourite and special moments of shared conversations or solving concerns, of making plans was in the shower, with water falling around us. It created a space that we loved, the water warm, relaxing us, allowing us to share those intimate conversations, maybe thats why my love of water is so deep and I’m always searching for waterfalls. I miss sitting at the top of Canoe Mountain where his ashes are spread, and his head stone rests, I am needing a trip up there so badly, we used to take a thermos of coffee and sit at the top of the mountain on the back of the truck having coffee, looking in awe at the wonder of all that stretched before us, sometimes we just sat not talking, just sipping coffee, holding hands, I miss feeling the touch of his hands, that were strong, and yet so gentle, the sparkle of his crystal clear blue eyes., I miss going to sleep each night enveloped in his arms, knowing as he always told me that as long as we were together we would get through anything, it was the safest, happiest place I have ever been. It was the deepest connection I have ever had to another human being and I long for that connection, I miss that connection, and it doesn’t matter how many years go by and this year will be 16 years since he left this world, I miss that connection, so deeply. I would Marry him a thousand times over given the chance, but I know that we are married forever, and on the other side of this life our life together will once again be. Our Anniversary is June 7th, he died June 12th, the best day melts into the worst and yet I cherish every moment, every memory.

I find it hard because as much as I want to remember and cherish our life, not many people are comfortable talking about those pieces of our lives.

The other big event for me was the loss of my mother, 2 years after my husband, I had not yet found my footing from his loss, when I lost my mother. The one woman who influenced and impacted my life more than any other person. Her strength and resilience was beyond measure, and without her willingness to share and teach me about that I likely could not have managed through the loss of my husband and then her. She was kind, generous, funny, she had a great spirit, she was forgiving, non judgemental, and she was always giving of herself to help make others lives better. She graced me with spending her final time in life with me, and when she wanted to die at home, I said OK, and with the help of my doctor it was like she was allowed to orchestrate her exit from this life into another on her terms. I did everything I could to ensure it happened, from having a choir coming in to sing hymns with her and surrounded with family and friends, it was a special time, one forever etched in all those who were witness to it.

I miss all the special times with her, taking her to garage sales, to teas, traveling the highways to go see family and friends, to Helmut’s (a german specialty store) for all the good german products, she would get so excited to get. To laughing so hard she would say stop stop I’m going to pee my pants, and then laugh some more, watching her face after seeing be reunited with my sister in Germany after 28 years, sharing the journey with her and letting her show me and share with me her home country. It was a trip that had a lasting effect on me, and I hope to return again one day. Watching her face lit up when she was surrounded by those she cared about. I miss the conversations about the hard parts of life, I miss how she pulled us all together, I miss that connection, that very special connection, I miss the friendship I had with her, I miss having her never ending supply of filling me with a sense of pride and ability in myself when I seemed to lose it. I miss her so very deeply. I remember in those final days, as they etched closer, one of our conversations, she said, I’m going to go soon, I said I know mom, its ok, and then I said, just promise me you won’t leave me the same day Uwe left me, I can’t manage that, she said I know, and she didn’t. My mother never let me down, I’m sure I let her down at times, but she never let me down. Even at the time of leaving this world she didn’t.

Mom died on June the 9th, peacefully and content, all my doors and windows open, as she wanted because she said her spirit needed to be able to be free, she didn’t want to get trapped in the house, and I know when her wings given granted she soared free, and I know she watches over me, she guides me, but I still miss her presence in my life.

I normally have always taken that week and gone away and done and spent some special time, last year I couldn’t because of the pandemic, this year again I cannot, so I am looking at the ways that I can ensure I still give myself the time and space to feel the sadness, to smile, to laugh and cry, to remember.

And maybe because of the pandemic, I’m not really sure, but I know that in this sadness it has really made me see how alone I am in this world, how I know so many, yet I am alone, without that very important connection with another human being like I had with my mom, and my husband. It’s ok that thats how it is, I am and have just become more aware. I seem to have become more aware of many things on a much deeper level. Maybe thats what one must do in order to continue to grow.

So as I move through to what will be a difficult stretch, but coming out the other side lighter, softer, gentler, growing in ways I have yet to see. I will always be grateful that I have had the experience of that deep connection and love I had from my husband, and that complete love and joy from my mother.

Photo by Michelle Leman on Pexels.com

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings

Mother’s Day

Mom

Mother’s Day always finds me missing my mom, I miss her everyday, but on Mother’s Day I find myself thinking about how she was the thread of our family, somehow she raised us to all be our own unique people, we are all so very different, but when it came to our mom, there was no difference, we were all devoted to her, we all had unique relationships with her, but she could make us all laugh, so many life lessons, she taught us to be resilient, self reliant, too always help others and to be kind, but don’t be a pushover. I miss watching her face light up when we all showed up for mother’s or any other occasion some occasions just dreamt up so she could enjoy a day with us all. Full of life till her last breath, she had a way of bringing people together, even in her final days. I know she watches over me, I still talk to her, she still guides me, and lately we’ve been in conversation a lot.
I am feeling strangely ungrounded, disconnected, I’ve been on my own for many years know, but never felt alone, not in the sense I do know. I’ve always been very social, always felt like I had my circle, my people. You know the people who become like family, but life changes, life happens, and sometimes those circles, your people, disappear, it can be for many reasons, sometimes, they die, sometimes when you’re life changes, as with living with dementia, and it forces change on you, you no longer fit. It’s no ones fault it just is the reality. But it has until recently just been something I’ve managed through, thankful for those who are still part of my circle, understanding and wanting nothing but the best for those who are no longer in my life. Now feeling that I am in the midst of more change on my horizon, but not wanting to try to control any of it, instead wanting to let it unfold as it’s meant to. I have had to go deep inside myself, thus all the conversations with my mom, and a few others who watch over me, and I converse with all the time.
It’s not that I’m lonely in the sense one would, goodness knows, I have a lot of people I converse with on line, that I work on projects with, I’ve made and I have great friendships all around the globe, so not lonely in the sense you think. I’m lonely on a much deeper and different level, I’m lonely for the connection, with “ your people”, the ones who just get you, the ones you can say let’s take off for the day and know that you’ll have a great time no matter where you end up. We all become part of our own little community of people. There is a lot of reasons things change. I have had do manage through many, some people have the life of staying in one place for most of their life, marriages that go the distance, a few lumps and bumps, but no big curve balls, others of us have had a life that’s like someone keeps throwing another grenade after just cleaned up from the last one.
I feel like life has been fairly quiet and stable for me since my diagnosis, not easy but at least somewhat stable. But my world is changing, making me aware that change is needed and necessary. I know once the pandemic is over I have to find a new community of people, yes the ones that are still here will remain, but I will be required to add to it, find people who enjoy things I enjoy. Life is very different for me know, how I do things and what I do is very different, but I know there are people out there for me. I need to ensure I am socially engaged, the pandemic has made me very aware of that.
I also know that I have to but more focus on doing the things I enjoy and want to do, the struggles and noticeable changes over the last year have also brought that into sharp focus. I can’t give all of myself to everything and everyone else in an effort to make a difference without maintaining and reserving enough to ensure I am having a quality of life.
All of this has been requiring me to have faith that I am being directed in the direction I need to be, to put my focus on.
in all of that I am going to be spending less time on social media, I’ll still be doing my blog, but little else, limiting time on Facebook, Twitter the like. Disconnecting to get reconnected on a more personal level. Social media is great, zoom is great, but I feel like I’m drowning in all of it, it’s taking to much of time away from actually living life. In some ways it has helped keep us connected and engaged while we are all in these lockdowns from covid, but it has also come at a cost in other ways. Know it’s time, as we hopefully will come out of lockdowns as the year progresses to regain a balance. So this weekend I have been mostly disconnected, and spending time walking, and enjoying the scenery, today I went for a drive found a beautiful little spot, that I discovered had a secret staircase down to a wonderful little beach area on Mara Lake. Pheobe has always hated water, but today even she seemed to need to get grounded, getting her feet wet wading in the water without any coaxing, I stood with my bare feet in the sand then waded in and buried my feet and ankles, the water was cold, it was peaceful, serene, no people to worry about. Finding my way through the inner workings of mind,body,soul. I’ve included some pictures for you. Seems dementia or not, life requires us to show up, stand up and take account of what’s working and what’s not, only thing is all of it is much more difficult with dementia in the mix. Good thing we are a courageous lot.

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Advocates Advocating Christine Thelker © 2020 Dementia For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

As the Familiar becomes Unfamiliar

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.

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Advocates Advocating Christine Thelker © 2020 Dementia For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

Frozen

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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.

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Advocates Advocating Christine Thelker © 2020 Dementia For This I Am Grateful Good Grief Living well with Dementia Silver Linings

When I need too

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.








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Advocates Advocating Christine Thelker © 2020 Dementia For This I Am Grateful Good Grief Living well with Dementia Silver Linings

The Day After

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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.

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Advocates Advocating Christine Thelker © 2020 Dementia For This I Am Grateful Good Grief Living well with Dementia Silver Linings

Rattled

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.

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Advocates Advocating Christine Thelker © 2020 Dementia For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

The Wrecking Ball

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.

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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.

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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.

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Advocates Advocating Christine Thelker © 2020 Dementia For This I Am Grateful Good Grief Living well with Dementia Silver Linings

A Mixed Bag of Random Thoughts

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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.

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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.

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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.