Category: Living well with Dementia

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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 Living well with Dementia Silver Linings Stress

After the Pandemic

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I sit in silent trepidation, wondering, somewhat fearful of what the world will be like post pandemic. We all wondered how we would get through it and if we have managed to get through it without the loss of family or friends we should take a moment and pause and be grateful. By the grace of God go I.

There has been much changing in our world through this pandemic and it has given us a time and chance to think about how much of what was life pre-pandemic we want to bring back, how much we want to let go off. It is know has we move towards a post pandemic world that we should all be asking ourselves what we want our world to look like, do we want to go back to the rat race of living to work, vs. working to live, do we want to be so busy we are always farming our children out, that we constantly work to have more and bigger, or do we want a more simplistic, peaceful, less stressed way of living. Do we want to work to live so we have time for family and friends, so we have time for ourselves? I think many are asking all the questions , do we want to go back to that world where consumerism runs us.

It seems we have a world running on anger these days, you can sense it, feel it, see it everyday, our world is broken and how we all decide to treat each other, to treat our earth as we come out of the pandemic is paramount to what the future is going to be. Will it remain broken, will the anger grow, or will we find our way to be more compassionate towards each other, kinder, gentler. Will we care more about the human element than the $$$$. Will we go back to a world driven by greed, money and power or will we truly fix things like long term care, will we start caring and taking care of our elders, care for them as the gifts they are to all of us. We will start to take better care of our disabled, of those living with mental health issues, will we look at our homeless situation and realize it is a systemic issue and we need to fix it, every single person should be able to afford housing and food. Coming out of this pandemic we have the opportunity to do a better job, to be better people, but will we do what’s needed and necessary or will we simply slide back into what was because that’s the easy out, not that it was necessarily how we were wanting to live, but because we know it, and in all it’s stress and discomfort it became comfortable.
I wonder if all that we have advocated for and have been working for, all the efforts to improve things for those with Dementia will be swept aside, will we be pushed further into the background.
I am left wondering will I be comfortable stepping back into the world, or have I know become even more comfortable in my isolation.
We are left with much to think about and I hope we will, and I know for many they are feeling a lot of angst, anxiety, and stress about what’s coming, but maybe we all need to take a collective sigh, then take our steps slowly and be willing to listen to that inner voice that we finally been able to hear after years of so much business that it was drowned.
Go back into the world doing your part to ensure you’re doing it in a way that I’d helping shape the kind of world you want to live in fully and wholly.
For those of us that live each day doing all we can to be present in the moments of the day we are given, for me that was the silver lining of my dementia diagnosis, for many the pandemic has given them the opportunity to be more present in their own lives.
I don’t know what the world is going to look like coming out of this, I do know, I hope we look back to a different time, to our parents time, take what was good from there and somehow lost, and bring some of those things back and toss some others of recent years that have not served us well. I hope we are all brave enough.

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

Accepting Imperfections in Ourselves and Others

As I had been part way through writing this blog, my friend Justine, from the Cassier Cannery ( if you haven’t been you should go) posted this message which spoke exactly about what I’ve been writing thinking about this morning. So here it is:

Grandma once gave me a tip:
In times of trouble, carry on small steps.
Do what you have to do, but little at a time.
Don’t think about the future, not even about what could happen tomorrow. Wash the dishes.
Remove the dust.
Write a letter.
Make some soup.
Do you see that?
You are moving forward step by step.
Take a step and stop.
Get some rest.
Compliment yourself.
Take another step.
Then another one.
You won’t notice, but your steps will get bigger and bigger.
Time will come when you can think about the future without crying.
(Elena Mikhalkova, ′′ The Room of Ancient Keys ′′)

I don’t know if it’s just me, if it’s in part my dementia or if it’s just a sign of the times. It feels as though a major shift or change is happening, with me, within me, and all around me. A shift in thought process, in interactions, in the journey of life it feels like it is positive in nature, but while the shift happens it’s like you’re walking in quick sand. having the patience to allow things to unfold as they are meant to and enjoying the moments in the day and days along the way can be challenging, we have grown accustomed to trying to control everything in our lives and although that on many levels disappeared with the dementia diagnosis it still somehow can slip back in unless we can catch it and put it into check. This happens if we have done the hard work, the facing our fears, demons, traumas, taking responsibility for ourselves, for our actions, for our decisions, for our thoughts. Being able to let go of taking on the thoughts and actions of others, whether that is about something they have done and our reaction to it, or something we ourselves have done. Always do what you know in your heart to be best for you, let others respond as they need to, it may not be in ways you expect but their response are about them and things deep within themselves and have little to do with you, and although at times we want to try to make others understand that how they view or see something we did or said is not how it truly is for you, it is about them and not your responsibility and you cannot control another’s way of managing things you do.

I was reminded of this yesterday at a webinar on Mental Health and Dementia hosted by DAI, I had been struggling with the unexpected response from some on some recent decisions I had to make, and how my mindfulness and self care process and the ensuing decisions I made were not easily accepted by some. Yesterday reminded me though that those responses had little to do with me, but with them. I was in fact doing and taking those small steps to maintaining my well being. It is something I think we need to all be more accepting of , that sometimes people will do and make decisions that are in their best interest but may not line up with our view of what that would be, and most of us don’t want or wouldn’t others influencing our decisions, but rather have them respect our choices and support us in them. I am very very grateful that for the most part I have received the latter more than the former.

Although having a deeper understanding of self and taking stock, of how and what we allow in our space, changes we need to make, be it for the short term or longer it is not an easy journey to get to, but it is allowing me to take those deep breaths when I need to, to not let the need to control what or how the future unfolds but instead allowing it to be what it is meant to be. My Mother used to say everything that is meant for you will find it’s way if you just let it. I didn’t fully understand this for many years. There are times when it’s difficult, but being able to catch yourself and take those deep breaths indeed helps keep one in a calmer more peaceful existence.

Yesterday was a great day on many levels and difficult on many others. I had the honour of someone reaching out to me via video call and be with them during a very very difficult heartbreaking, tragic and sad time. It will stay with me forever, them being thousands of miles away, no ability to do more than be there, to be present with them, feeling helpless, yet somehow knowing that in my helplessness, I was helping and giving them exactly what they needed in their time of pain and grief.

After, it left me sad, for her, for her loss, for her unbearable heartbreak even for me, it was emotionally exhausting, and yet somehow along with the sadness and exhaustion was a sense of somehow being filled. By being allowed into her space through such a heartbreaking event, being with her as it unfolded, she had given me a gift. Sometimes the gifts we receive come through the darkest moments of others. I won’t tell you any details of what it was, for that is her story to tell, but I will say that it reminded me of how relationships change and grow and ebb and flow, it reminded me of how little control we actually have. It is a snapshot of time that will be with me forever. And it reminded that we have to treasure each moment, don’t worry about the hows or whys of what’s coming, life is fleeting, life is beautiful and life is not meant to be controlled, it is meant to be lived, with all it’s up and downs, all it’s twists and turns.

It reminded me that we can’t control the relationships we have, we can only be open to them, to try our best to maintain, to not judge, to not take the decisions others make personally, to cherish those who chose to stand beside you through the ups and downs and always leave room for those who may stray, or step away to come back in, without judgement. Sometimes we don’t need to understand or know everything sometimes we just have to be accepting.

So this morning I am up early, listening to Lauren Daigle, her music is good for my soul. A little taste is below.

So take the small steps until you’re ready to leap, or take no steps for a time, be willing to be still what’s meant to be will find a way. And cherish it all with every breath you take.

This is the link to a song that seemed very fitting

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

Shaping the Un – Shapeable

I’m sitting on my deck enjoying a beautiful Sunday Morning. It’s a long weekend here in Canada, the one that usually has everyone off and away camping, holidays and kick starting the upcoming summer season. Of course for the second year of lockdowns and restrictions due to covid it has changed that for many, although because people are allowed to camp and explore in their own area many are taking advantage of having access to many of the campsites, and venues usually filled with tourists. I love the tourists because they are good for the economy and because I love to wander and see new places as much as I can. It’s been part of my makeup since I was very young. But it would be nice if a certain percentage of things like camping spots were kept for people who want to be out and enjoy but closer to home. I don’t normally go anywhere on long weekends to busy, even the back country is and can be busy so I normally stay low key. It’s actually kind of nice as my home area is quieter on long weekends. I was planning a nice bike ride this morning but it will be more of a mid morning ride, maybe a longer ride that way.

It’s funny yet not surprising that sometimes making a few changes in how and what we are doing can have bigger than expected outcomes and just how fast some of those outcomes can be seen. The last 1.5 years has been difficult health wise, a lot of hospital stays, a lot of tests, treatments and the likes, I am still having some testing doing for various things but overall, I think I am starting to feel an upswing. I am more energetic, up until 10 or 11 instead of being so fatigued that bed at 5 or 6 pm was the norm, but when your body is struggling it is necessary at those times, but I sure am enjoying the reprieve. I truly believe I have been pushing my brain to hard, depleting it, not giving it enough time off to rest and recharge. It’s something I’ve talked about many times, but I don’t think that sometimes when you’re in the throws of the “busyness” that we actually recognize how badly we are depleted. Sometimes our bodies do what’s necessary to make us pay attention to what it is trying to tell us. I’m glad I paid attention before the cost became tragic and maybe irreversible.

My cozy morning coffee spot

So this morning as I’m sitting waking up refreshed, revived, enjoying all my plants and seeing all my seedlings start to take shape to become the beautiful array of colours that they will be, I have been giving lots of thought about the shaping and reshaping that I am in the throws of. I was chatting yesterday with a friend who is making the move into independent living, giving up what has been home for many years, he has had to scale back a lot of commitments, his dementia has let him know it’s time to do things differently. It’s what I’ve been thinking a lot about in recent months, how to I reshape my literally unshapeable life. Normally as we go through life we create a new one, three, five year plan’s etc and adapt as we need to. But when living with Dementia making any plan beyond today or at best this week, is futile, things change day by day, what I can manage today will challenge me tomorrow then in three days it may be easier than ever. The doctors give you the best information out there about how long your life expectancy is after diagnosis, for me it was 3 to 8 years, well this is year seven, if I look at that … holy crap should I just throw all caution to the wind, yet I know many people can do and are living 25 or more years, others don’t even manage a year, dementia is cruel that way, it is and will take whatever trajectory it decides for each person. I have often wondered which is better. I’ve chosen to be grateful for each day and although the last year and a half have been challenged by health and the pandemic, I am now trying to figure out what to do for my living arrangements there isn’t a lot of options , when I’m feeling good, when my brain fatigue isn’t crippling me, when all the complicating factors are sitting quiet, I feel like I can maintain on my own for a very long time. But what is being on my own really? Is there a better alternative that would allow me my independence and a better quality of life? It’s a lot to think about. I’m trying to just let it sort itself out, put it in Gods hands, let the universe show me what the next step should be, I don’t want to make or force any decisions, as the world restarts, hopefully here in Canada sometime this summer/fall, hopefully the solutions will present themselves.

My advocating and writing will always be with me, working with the organizations I do and the research groups is an important piece of my life, reshaping how much and when and what pieces I do will also be important. Living with dementia is about continually adapting, and once again I am in the throws of it but grateful that I have the ability still.

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

A Powerful Day


This speaks volumes to me, sometimes healing is not because anything bad has happened, sometimes it’s about healing your mind, body and soul, when it’s tired. We often push ourselves, to keep going, because we feel a sense of commitment and obligation, when in truth, each and everyone of us no matter what our title or position, has a duty first and above all else to take care of our commitment to ourselves and our well being, for only when we can recognize that we need to readjust our lives, to take time for our selves, can we then heal our bodies. Stress kills, even when we’ve convinced ourselves it’s good stress because we believe in something so strongly, stress still kills, silently and slowly and sometimes quickly, sometimes the damage can be strokes, heart attacks and other things, sometimes we don’t get to come back from those things, so if we keep pushing beyond what is reasonable and for each of us is different, some people don’t have the ability to recognize when it’s time for them to change things to put more into self care, some people won’t even look at it if they are told.
I am a realistic person, I do look at ask myself the hard questions am willing to step up and say I can no longer do this piece, or that bit, I can own it. I learnt many years ago from a very wise doctor, who said to me, that the best way to help ourselves is being willing to look at ourselves and be honest with ourselves. I am as guilty as anyone of piling more on, not wanting to say no, ignoring what my body is telling me, but luckily I only push that envelope so far. For I am also a firm believer if I am pushing to hard , I cannot be effective in the ways that I want to be.
So check in time as come, no I’m not in a mental health crisis, the complete opposite actually, you see when you are willing to do what’s necessary if if it’s not maybe what you had wanted or planned, it is actually a very good way to stay mentally well.
My specialist says he doesn’t worry about my mental health like he would some others, because I am willing and do do what’s necessary for my well being. I believe after a very difficult year and half with health challenges, many still on going, and the challenges of living with and through a pandemic, it was time for me to take some much needed time for self care.
I am still doing things I feel I can manage, but I do not have a schedule that I can’t manage. One thing that did happen was that the pandemic found the use of zoom become standard, so it became more and more, tied to a computer, I am not tied to a computer anymore, I am not being managed by it, I am managing it. Attending what I can as I want when I can.
I am spending a lot of time out in nature today I spent 11 hours in the woods discovering an area that I have always wanted to see but never have. I discovered a magnificent waterfall, listening to the water thunder and roar as it crashed over the rocks of the canyon wall, so powerful, I had a chat with a moose that was as surprised to see me as I was him, incredible beauty, and strength, he jumped out of the woods, just about hitting the car, looking surprised that I was there, he took two large yet some graceful strides and was on the opposite side of the road, I got out of the car, he took a couple steps back, I took a couple steps forward we looked at each other, I felt his strength and power, those two things alone were filled me up, reminded me of my strength and resilience. I have also been wanting to take pictures of cows, I love cows, and for two years I’ve been waiting for an opportunity to take pictures of them, it came today, driving down the last stretch of the trip into the woods, I was stopped by a man waving a switch, as I looked over to my left , I saw, they were herding cattle, to move them, I got out my camera and was delighted as they came thundering across the road, the young ones so cute, and I happily snapped some photos. It was a powerful day, it gave me so very much. I will go back to that area many many more times. I am relaxed, feeling much peace, and knowing whatever and however I do things going forward, I will always do what I need to too ensure I can stay as well as I can, mind,body,soul. I also understand that just because it is how I live my life other people will not agree with, but at the end of the day, I am responsible for my life, it is only me who I can rely on, I live alone, so if I don’t do what’s best for me then I would be jeopardizing the very quality of life I have advocated for others living with dementia to have. So for me it’s about doing my very best living until dementia stops me in my tracks. I am grateful for all I learnt from 10 hours in the woods.

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

Doing the Right Thing Does Not Always Come Easy

Today, I wrote a letter resigning from the board of Dementia Alliance International. This was a very difficult letter to write, it was one that came after weeks of wrestling and wrangling with a lot of things. I have in a number of recent blogs wrote about having a heavy heart and having things weigh heavy on me, and that I was being called to get grounded, to get reconnected with myself. Part of that meant allowing myself the time and space to hear that voice that guides you if you quiet all the noise and chatter that comes at us constantly. To allow our inner voice to be heard. It is not always easy to do, we bargain and even try to reason and justify things to be the way we want them to be even when that inner voice is trying to tell us something different. It’s been a lot of emotional turmoil. But today I resigned because I knew it was the right thing to do. It was the right thing for me, which means it is also the right thing for the organization. We can at times believe they couldn’t manage without us, whether that be a job or within an organization, we can at times let our own attachments to it cloud our vision, make our selves feel like we need to be there we need to stay, they need us to stay, or it needs us to stay. But if we peel away all the things that convince ourselves of and truly hear the voice that should be guiding us that voice that comes from within, then we would know when it’s time to step aside make room for others to step in and up, and allow ourselves to do things in other ways and avenues that can be just as valuable. We must also look at how things are impacting our overall well being and when things start having to big of an impact on our well being we have to be willing to take the step back.
It is all of these things, like the perfect storm colliding, that brought me to make this very difficult decision. I never spoke to anyone about it, I never talked it through with anyone, for i knew that if I did my decision could be clouded or changed, and I needed to be clear and listen to my inner voice.
I love DAI and all it’s members and all that it represents,I have spent three years on the board, working hard, I have spent longer trying to represent DAI well in every interview I have given, in every article someone interviewed me for always giving DAI credit for lifting me up, helping me find my voice, for helping me be a better advocate and a better person.

I am and will always be grateful, I am still a member who will work hard to represent support DAI in every way I can, I will just be doing from a place within the membership not from within the board. I can still use my voice wherever and whenever to promote DAI, I can still mentor others, I can still encourage others to get involved. I just won’t have the operational component as well. it may in fact turn out that I can be more effective as a member than as a board member.
There is a lot happening for me, health wise, personally, and I have had to take stock of how much I can reasonably put in and where and how. Scale back in some areas, do things differently in others, stop some things altogether. But one thing I have come to realize of late and when listening to my inner voice is that I have not been giving enough time to myself, too my well being, to doing those things that fill my heart with joy. If I don’t give as much time and devotion to myself as I won’t be able or have anything to give to things like DAI.
I wasn’t even sure what I was going to do or if I was going to do anything but I new if I listened, I would know what to do at the right time, That voice came to me clearly at 945 this morning, and by 10 I had written my letter of resignation and sent it to the board members, and as soon as I hit send, I knew it had been the right thing to do. Next month is the AGM, it’s the perfect time to set the stage for new faces to step into roles on the board. It will be exciting to watch and see as they help carry DAI into a new era. I will always be around to assist, to mentor. I have the greatest respect for the organization and the people within it who have brought so much to my life, and I say thank you for all you given, I truly hope whatever small part I have had that it has and will continue to leave a positive mark.

It’s time for me to think about what my life needs to look like for me for the next while.


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

Necessary but Unwanted Conversations

Photo by Karolina Grabowska on Pexels.com

This morning I am sitting here waiting for my Doctor to call. I called his office earlier asking for an appointment, and I always feel so fortunate that he usually makes time for me so my wait is seldom more than a day or two at best, but most often the same day. I do understand how blessed I am to have that with my doctor.

But today I am having a conversation with him that I have put off for far too long. Partly this has happened because I forget when I am in my appointment and if I haven’t written it down it doesn’t get talked about, and secondly I think I have been trying to deal with it on my own, but I realize know that I am no longer able to. This is another piece of Dementia that people too often understand or know about, and with Vascular Dementia many don’t understand that it is very common part of Vascular Dementia. I am talking about issues with incontinence. Seems funny doesn’t one would wonder how and why that is such a common issue with vascular Dementia, but our brains are the control centre for all and when there is not adequate blood flow and Oxygen to the Organs it effects things like muscle control, which is needed to have proper control of body functions, all body functions. Every one thinks it’s just memory, it is so so much more and often so much of it we don’t talk about.

This is not a conversation I want to have know or ever, but the reality is it is effecting my quality of life so I can no longer put it off. Exercise and all the things I try to do to help make the incontinence less prevalent and did work for a time and at times I got total reprieve from the effects, although those periods of time are all but gone and those things I do have now stopped working so I need to bring my doctor into the fold. I don’t want medication, not sure if there is anything else we can do, but I will have the discussion, because my quality of life is more important to me than anything else, and I sup0se if medication can help with that then I will look at it. I like to have all the options then make a decision.

At 62 years old these are not conversations we like to have, not with our doctors not with anyone. Most people are too upset and self conscious to discuss these things, they can erode our self confidence, our sense of how we see ourselves, but these are the real parts and pieces of Dementia, and they do impact a persons quality of life and we need to talk about those things, no matter how uncomfortable they may be. I am having many issues with muscles throughout my body, it’s why I am trying so hard with exercise and bike riding walking ect. I am trying to keep the blood flow as best I can, living with Dementia is hard work and getting harder all time. But I am grateful that my doctor listens and does everything he can to try to help me with my quest to maintain my quality of life.

So I’m sure he will do some homework after our chat and then help me come to some decisions on treatment and managing this piece, another indicator that although we look fine, changes are often happening that others don’t see.

I hope you all enjoy your day, I’m off to give my Fig plant an shower while I await the Doctors call.

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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 Living well with Dementia Silver Linings

Learning about Myself at 62

It seems that life is always about learning, understanding and accepting. Yesterdays email which I will include parts of here, was perfectly in tune with what and how I have been feeling.

I understand that many do not and are not spiritually engaged, but my angels guide me always and I pay close attention to what they are telling me. I have always believed in powers greater than us. Some people call it being religious, some call it spiritual , some think it just hokey or plain crazy. It matters little to me, I know I receive many messages, not just in writing but they come in many ways, the visits from spirits late in the night, the message that comes through to stop me from doing something or going somewhere.

This message came exactly when I have been trying to get to that inner place to look inside and feel and hear what my heart is needing. the Hermit mode is exactly what I have been doing, quiet complementation sitting by the water, walking along the river, hugging trees, everywhere that puts me more in touch with my inner self. I know, I know, this is where many will say ” she really is losing it”, she’s crazy. and I won’t say your wrong, but maybe in losing oneself we find ourselves again, maybe being a little crazy, crazy enough to believe in something greater to looking outside the box society stuffs us into is not a bad thing. It just means I am looked at oddly. So here is my message yesterday:

Photo by Lucas Allmann on Pexels.com

Christine, right now Archangel Hamaliel is here to balance your overflowing emotions. 

Have you been feeling too emotional right now? As if you can’t see the whole picture clearly because your feelings keep blurring your vision?

It’s okay to be in tune emotionally, Christine…

But Archangel Hamaliel encourages you to tap into your logical mind right now to restore balance in your inner world. 

While many humans struggle to express themselves emotionally, let their feelings flow through them, and actually experience passion-filled lessons, you don’t try to shy away from these things. 

This is something to celebrate, Christine! 

However, there is always a need for balance. 

Tapping into the masculine energy that Archangel Hamaliel delivers can activate your logic, help you become more decisive, and make choices that benefit you in the long term, not just this moment. 

In order to help you invite the healing energy of Archangel Hamaliel into your life, it might be helpful to know more about him, right? 

Well to start, he is the Archangel that rules over the astrological sign Virgo and he also rules over Virgo’s ruling planet, Mercury. 

Even if you’re not a Virgo or don’t have any Virgo placements in your chart, you do have a Mercury placement that rules over your thinking and communication style. 

Familiarizing yourself with your individual chart can help you understand how Archangel Hamaliel may be trying to support you right now. 

Sometimes, if you see wheat (which is associated with the Virgin symbolism of Virgo) or a graceful swan, you can relax knowing that Archangel Hamaliel is nearby. 

When I called upon Hamaliel to help me make an important decision in my life, I saw a swan present itself at my local park’s lake. 

The swan is very interesting as you observe it, Christine. When it rests its long neck, it helps the swan’s head face inward towards their breast.

Photo by Sora Shimazaki on Pexels.com

This symbolizes becoming more introspective to come to your decision. 

Also, pointing your mind towards your own heart, not looking outward for other’s opinions or perspectives, is another lesson that Archangel Hamaliel sends the swan to teach. 

Right now, he is inviting you to go into a quick hermit mode and meditate on some of the larger decisions that you’re going to have to make at this time. 

Remember to keep the bigger picture in mind and balance your mind and your heart, Christine!

So going to bed with a heavy heart, wondering should I be doing more, or less. The feeling that big changes are coming for me, and struggling with it all. Feeling like I don’t want to continue living my life as I am currently, I need more social engagement, I was a very very social person in my pre dementia life, I no longer can manage what I used to, but it doesn’t mean I am unable of engaging, I need to live somewhere where I can put my feet in the grass, my hands and toes in the dirt. I am struggling here to feel really alive, the way I like to feel. I make it work by going out into nature as much as I can, but its not ideal, days when I don’t feel well enough to drive and go to those places leaves me feeling trapped and like life is being chocked out of me.

But then this morning, I woke up acknowledging that yes I am very sensitive to things, much more so than many realize, many see me as tough, strong, outspoken, but I am in fact a very feeling and sensitive person, things effect me much more deeply than most will ever be allowed to see. So my message was very accurate, and just when I wondered if I was actually making a difference if it mattered, this morning another message came.

This message came from someone I had never met, little dog Pheobe decided to get up early, something she hasn’t been doing recently and wanted to go out. So we were outside of our building, she busy looking up and down the street, when a truck came around the corner, not unusual in any way, until suddenly it veered over to the curb and the window came down and a lady I had never seen before said ” You’re the lady that wrote the book about Dementia aren’t you?” Not expecting that, kind of startled actually, it took me a minute to respond, I said yes, she said I bought your book, I’ve been wanting to meet you, my husband has young onset Dementia, and I would really like to meet and talk to you more. I’ve read your book a couple times and Ive purchased it for someone else as well. She told me her name and asked if it would be ok once allowed for us to have a distance visit. Of course I said absolutely, yes she took down my unit number, thanked me and off she went. I stood there for a bit, marvelling at what had just happened. It made me realize that those moments are what matters, being that someone to go to, someone who is willing to talk about what is happening to them and their loved ones. Yes, I can use my voice and try to make a difference in many ways, but those are truly the ways that really bring it back to what making a difference is all about, doesn’t matter how big or small, what matters that you have been willing to be vulnerable to open yourself up to give others that safe place to be.

It reminded me that its ok to cut back, let go, and do what you can, it all matters. So no matter how much I continue doing or for how long is not the issue, it was about learning that piece of myself, accepting that this seemingly strong, independent woman, can also allow herself to accept the sensitive, caring feeling piece of herself and admit that I am not strong all the time, I falter, I cry, and at times I need to retreat, to heal, to rebalance, so that I can continue to make a difference where and how I can. Yes still learning at 62

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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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