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

Socialization Am I Missing It


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Today was a busy day for me, I disconnected on the weekend, I disconnect more often these days in a attempt to not become overwhelmed and overtire my brain.
But today at our Brain Health Hub meeting, ( if you haven’t been you should come), it was an interesting hour one in which gave me things to think about. We were talking about the importance of exercise, nutrition for brain health, and then someone said they felt socialization should be added to that list.
Our brains are the hard drive of our body, optimizing our brain health is something most of us understood little about until the damage was done, and we received our dementia diagnosis, because let’s face it we do not grow up being taught how important brain health is, or why.
after diagnosis many of us learn that important piece and then we start the process of learning all we can about the nutritional components, the exercise components, but until today, ( well yesterday know as I started writing this last night but didn’t finish it before sleep overtook me.), until today we seldom if ever talk about the importance of socialization.
I was wondering why, perhaps because we become more isolated as people drop us off of their friends list, like we are contagious or something, more often because our illness changes us in and on many levels and not many people are willing to accept anyone except as they always were. It sad, truly sad, for they miss out on some wonderful opportunities to share experiences with you, to enjoy pieces of you that often were buried or hidden and your illness allows them to emerge. Those losses are felt much more deeply than people realize, I know for me the hurt and pain caused by those losses have been at times unbearable. So you end up being more isolated, but you find new ways to socialize, if it doesn’t spiral you into depression which is a common side effect of dementia, another component that is not discussed and shared with you when you are diagnosed, so for some this causes further isolation. This isolation causes even further loss of brain function, the lack of socialization. Socialization does not have to be loud and boisterous, it does not have to be large gatherings, it can be small get togethers, one on one, but socialization increases our brain function, it’s vital to our mental health, it helps develop new brain pathways.
So for people who already suffer the loss of so much of the social aspect of their life due to the illness, ( makes me so sad that people fear dementia so much), let’s add a covid 19 pandemic into the picture, now those living with dementia are at a much higher risk of getting covid, so isolation again takes on a real and prevalent spot in the lives of people with dementia. The socialization that they managed to maintain, is now decreased even further, this puts them at risk if further and more rapid decline with our disease.
It is imperative that we start to look at the socialization aspect more closely. We have all be blessed to have zoom, and video messenger calls, etc, it has been a true life safer for me, for without it my socialization would be pretty close to nil. Those video chats with friends those zoom calls where we share laughter and tears are an important piece to keeping us connected, and maybe during a pandemic it is saving us from an even bigger mental health crisis.

But, it does not take away the importance of face to face interactions. I can’t honestly remember when I ever last received a hug, it almost scares me to think how I might respond should I ever be fortunate enough to receive another one. Will I cringe, will I fall into a heap of tears, will I fail to feel anything at all? I ask myself these things, I likely still have months to go before I will be able to maneuver outside of my bubble, so I am not sure how I will respond. But I know my walks have kept me socialized to a degree, having a conversation while out walking, with a stranger, on opposite sides of the street, but at least it’s face to face interaction, this has been an important part of my well-being during this time.

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So for people with dementia, people with dementia who are on locked units in Care Homes, I call them warehouses, and it’s a human rights violation to have people locked on these units. But that’s another blog another time. They do and are though severely affected by lack of socialization, on a normal day, during the pandemic, it becomes a crisis for them, and for many who live with dementia. Many are fortunate to live with and be part of a family bubble, which allows some socialization but still not enough.

So it becomes vital that when we talk about brain health, about the things we can do to help ourselves continue to thrive and have quality of life. To be able to continue to contribute it ways that keep us having a purpose, that keeps us having a life lived with hope, with feeling valued. We then must remember the importance of socialization no matter what stage of Dementia you are in, that included in the nutritional, exercise components we must not forget the social component.

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

We have to ask Ourselves

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One thing I have learnt through my years of living with Dementia, is that at times, how I am interpreting a situation or things being said by others, can vary immensely. This comes from having felt alienated, hurt, pushed aside, along with many other types of feelings. At times, I reacted too quickly, sometimes, I reacted without asking the person if I was understanding and interpreting what was being said or done correctly.

I have learnt that my dementia at times, makes it difficult to read and understand the signals that are meant or given and whether I am actually taking it in as it is meant. This can lead to much discomfort for many, I have seen and watched this with many with Dementia. I have monitored myself and have come to understand that if my health is in a compromised time, if I am maybe struggling with fatigue, if I have been over taxing my brain by taking on too much, then somehow my brain starts misinterpreting the words and actions of those around me.

We do not and cannot and must not blame our actions and reactions always on our Dementia, we must be willing to look at what is truly our nature, and maybe something we need to do personal work on. Having dementia does not make us exempt for acknowledging and working on ourselves, it does not give us the right to point fingers and blame, without being willing to look at ourselves and our roles. To say it’s my Dementia, is not OK. Playing the Dementia Card as they say can do a lot of damage not only to ourselves but to others.

This also does not mean that others can treat us badly or insensitively because we won’t know the difference. That is a very dangerous road for anyone to travel. The pain and destruction caused can be irreversible. The truth is our emotional ( feeling) portion of our being is the last to leave, they say that we may not remember what you said, but we will remember how you made us feel, I believe that to be true wholeheartedly.

At the same time if we come up against the same ” feelings” in situations over and over with multiple people or situations we need to ask ourselves what our role is and what we are maybe misinterpreting. When we have the willingness to do this, it allows us to live our best lives with our Dementia, and have more fulfilled relationships with others. There will be times when our dementia overrides our abilities in these regards, but not every time, not all the time. Usually if we look back at situations if we keep getting the same types of results it means there is a lesson for us, and our dementia does not hinder our ability to recognize those. It may very well just mean we have to remind ourselves to be cognizant of our inability to always read a situation, or the actions of others correctly, and that perhaps we need to give ourselves a “time out”, before we respond in ways that cause unnecessary harm.

After all we are still human, we still react, we still feel, and sometimes just as with people who do not act or react, sometimes doing nothing for a time is the best medicine. Somehow, people with Dementia tend to place higher expectations on themselves and on others, I have yet to understand why, except that there is always a feeling to prove that we are still able and capable. But being mindful that we are still human and taking the time to do self evaluations and ensuring to listen to those around us who may be trying to let us know that we need to check in to ensure that what we are feeling and reacting to is accurate.

There are times take a step back, where I have to decide that it’s time for me to let some things go to be able to fully give to certain things. This is another area where we tend to push and tend to not let go. It doesn’t mean we can’t contribute, but maybe we contribute from the background versus the foreground. Maybe we contribute less frequently, or maybe we take a total step back, because we are have another project that requires more focus. There is nothing wrong with doing those things, in fact we tend to do a better job when again we are willing to not look for accolades, or praise, but instead looking at how and where we are contributing in a good way.

It may mean we take a step, away from one Organization or project to dedicate time to another, it does not mean we have to step away for ever, it just means we step away for a time, so that others can step in and up and that way everything we have been and are and may again be involved have the ability to thrive. This is about respecting the Organizations we work with, the people we work with and the overall goal of making things better for those living with Dementia. This is where we have to do that self check in again and make sure our own egos are not hindering us from doing the step back when it clearly is the right thing to do. Its all hard work, it takes courage, but one thing I have learnt is people living with Dementia are some of the most courageous people I have met.

I took Friday, Saturday and Sunday off because checking in I knew if I wanted to be able to contribute to the up coming week it was a necessity. there are and have been and will be in the future times, whether days or weeks, that I will take total breaks, so that I can continue in a positive way for a longer period of time. Somehow I wish all these lessons had been learnt long before my Dementia brought them to the forefront.

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

What If

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I don’t normally like to do the What If’s, they usually feel like a waste of time, but everyone in a while when I am sitting pondering things the What if seems to be a good way to turn things upside down and around and get a different perspective.

Looking and talking recently about how after 25 or 30 years of people advocating for change, so little has actually been shown any tangible results. Why is there always talk about making things better for people living with dementia, but things are not much better, people are still segregated, still living on locked units, once in care. Why is it that the need for better dementia education has not happened, or the little that has, has had no real impact for those living with Dementia. Why is there still no rehabilitation services, to help, people are still being told to go home and die.
But what if we look at what has changed is changing, things like the voices of those living with Dementia getting louder and louder, like people living with dementia insisting they have a voice at the table always, when governments, organizations and others are talking about dementia, that Nothing Happen without Us and our input. It has taken a long time, and it still needs improvement, more of our voices than yours.
What if the Organizations and Stakeholders all set aside their “corporate ego’s and personal ego’s”, what if all the Dementia and Alzheimer’s groups did the same. What if they sat at the round table together and actually talked about each other’s strengths and how they might help support each other instead of compete with each. What if that then put the focus on where it should actually be, the persons living with dementia. What if these things were and are actually possible if people truly can set themselves aside and look to the greater good. What if we get past the “ this is the way we’ve always done things”, and the “we did this first”, and got over ourselves enough to truly see how true collaboration is not impossible, it’s actually easier than one thinks. What if we quit saying it won’t work, what if we quit over complicating everything.
Sometimes the answers of all the what if’s are right there in front of us, the question is are the people running the Organizations, and many of them have become big business, are they willing to actually step back, step outside the box, stop long enough to make it about the people living with dementia and not about who’s the biggest and the best, and about money. It is then that true collaboration would and could begin, it is then that all the groups and Organizations could thrive. It is then that we will see true tangible change for those living with dementia.

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

Being Mentored and Mentoring

As you can see this blog is about Mentors and Mentoring. I have been priveliaged to have had and still have an amazing mentor. Someone who has helped me learn to trust in my abilities, to trust in speaking my truth. To understand that when you stand up and speak your truth, and fight for change, you will upset those that don’t want you to speak your truth, that don’t want you to use your vice unless you are using it to help propel their agendas. So when and if you go against the grain, you will be respected by many, hated by others. At times you will be required to shed light on things others wish to be left unearthed, and yours may be the lone voice, other times you have your voice along side many others, sometimes you will be using your voice to help bring awareness and change, that has been advocated for for years, and it becomes your turn to help carry the torch. Some will want to help lift you up others will try to tear you down.

But that in all of that, if you are advocating and using your voice for positive change, even if some are not ready for the message then you will always feel good and inspired by what you are doing. Your mentors will encourage and inspire, they will teach you, they will help you navigate the frustrations, they will celebrate with you the wins, no matter how big or small.

I can think of a few mentors who have truly made a difference and an impact in my life, a high school teacher, Mr. Copeland, who could see things in me I could not see in myself.

My boss and friend Marliss, who still today is a great mentor and inspiration. She really was the one that helped me understand that sometimes you have to stand up for what is right, even though it may come at personal cost, because it is the right thing to do it was at that time that I did and I was challenged, in the end it brought me to someone else who became a mentor of sorts, he was the CEO at the time, and within him he had the power to destroy my career, instead he listened, we both learnt from each other, some of my opportunities to advocate for change started through that meeting.

When I received my dementia Diagnosis and my life was forever altered, not the first time my life had been shattered and altered, the loss of my husband and my young age of 47, was another of those life moments, but in that shattered and tattered mess of being diagnosed, I came across an organization that had been unknown to me, Dementia Alliance International.

At that first meeting, I met my next mentor and inspiration, Kate Swaffer, so encouraging, so engaging, so willing to help you see things in yourself and encourage me too not be afraid to let the world see me. I have and continue to learn from her in every conversation, every text, every zoom. I know and feel I have grown so much with her guidance, encouragement. Always willing to let me rant when it feels like my voice is not enough or not loud enough. When somedays it feels like all the advocating and hard work are futile, because the tangible results are not there. She has also taught me about mentoring others, who are newly diagnosed, and mentoring does not always mean to mentor to have someone join you in the advocate role, but sometimes mentoring can just be helping them see the gifts they have to share and to encourage them as they move into their new life with Dementia. She has taught me about having grace, she has taught me about egos, and where and when and ego can be of benefit and when it can get in the way of true change. I could write a book about all I have learnt for Kate, and I could write and book about how much the friendship as come to mean to me.

But this blog, it about the importance of having a mentor and being a mentor. At this time thought it never hurts to say thank you to my mentors, so I thank you for all the ways you have enriched my life. It doesn’t take special training, it takes a willingness to look beyond yourself, it takes the real and honest want and need to help others. It is a gift that goes unmatched in my opinion, because it is a gift of self.

So today I want to encourage any and all of you to take up mentoring someone, in a big or small way, or let someone else mentor you. The personal growth and rewards will take you to places you never thought you would go. You will develop in ways you never thought, you will learn more about yourself than you can imagine. I am and will continue to work at mentoring others, because in my mentoring of others I again am uncovering pieces and parts of myself that where unlocked in myself. So next time the opportunity comes up take it be a Mentor or be Mentored.

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

Psychology of Aging

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Today I had the pleasure of doing an interview with Dr. Regina Koepp, below you will find info on her. The interview was delightful, we talked a lot about the important roll DAI has played in my life since diagnosis. She had read my book, she had a lot of great questions, we talked about the gift of friendship DAI has given me, about the ways it has helped me forge a new life for myself, a life filled with hope and purpose. We talked about the importance of the peer to peer support, self facilitated, where being accepted on your worst day, and your best are not something you worry or question, you just know the acceptance and support will be there. They helped me find my laughter.
It was a great 1.5 hours, it went so quick, we talked about advocacy, about the importance of enabling instead of further disabling , by allowing people with dementia do as much as they can for as long as they can, sometimes it’s easier to just do it for them, sometimes you think you’re helping them but in reality you are further disabling them.
we talked about the need for better collaboration between organizations, instead of competing, competing helps none of the organizations and absolutely does a disservice to people living with dementia. We talked about more efforts are needed to help support people to have a good quality of life, instead of just focusing on a cure. Care until cure, is the only way forward.
I am grateful she reached out to me. I’m glad there is people like Regina who are helping us have our voices heard.

please see Regina info below and check out the work she is doing.

About

Regina Koepp, PsyD, ABPP, is a board-certified clinical psychologist, gerontologist, and an assistant professor in the Emory University School of Medicine’s Department of Psychiatry and Behavioral Sciences. She is also Staff Psychologist at the Atlanta VA Health Care System (VAHCS), where she provides direct patient care and consultation on the Gero-Psychiatry Outpatient Mental Health team. 

Dr. Koepp serves on several national, regional, and institutional committees aimed at enhancing care and services for older adults and their families. These include the Geriatric Mental Health Field Advisory Committee of the VA Central Office in Washington, DC, and the Georgia Psychological Association’s Ethics Committee. She is also a founding member of the Diversity Education Committee for Psychology Training at the Atlanta VAHCS and she serves on the Diversity and Inclusion Subcommittee (DISC) in the Emory University School of Medicine’s Department of Psychiatry and Behavioral Sciences.

Dr. Koepp specializes in the aging process, care of older adults and their families, individuals and families experiencing life-altering conditions, chronic and terminal illness, dementia disorders, caregiving, traumatic loss, end of life, and grief and bereavement. She is also the creator and host of the Psychology of Aging Podcast in which she discusses the aging process and its complexities.

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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 Living well with Dementia Silver Linings

ReFraming how I am Viewing and Seeing and Thinking

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I woke up this morning thinking about the concept of Dementia Friendly Communities. Yes I sit on a committee here where I live to help our community become “ Dementia Friendly “.

The concept behind this is great, it’s important, it will go a long way to create awareness, understanding about Dementia, it will also help decrease the fear that surrounds Dementia, and allow those living with dementia a better quality of life while maintaining being part of their communities. It will help in the effort to stop the stigma and stereotyping that has for far to long been part of the challenges and road blocks for people with Dementia.

We ( I and many others), have been talking about the use of the phrase (“dementia Friendly”), not because the phrase itself is so bad but more because it at some levels is segregating, people with dementia from others with other types of illnesses.

Make no mistake segregation is a Human Rights issue and violation, people being housed in Long Term Care ( I refer to those as human warehouses), are segregated, locked doors, displaced from being part of the main body. It is against their human rights, but that fight is ongoing and another one I will fight to see change in.

But we often ask others to think outside the box, colour outside the lines when we are talking about dementia, and therefore we must be willing to do the same. So this morning I woke up, made that all important coffee, sat in my bed thinking about the “dementia friendly community”.
I realized that perhaps I needed to rethink and reframe how I see that terminology. This again speaks to the importance of language, which is also something I speak about often.
If I really step back and look at it, calling it “ Dementia Friendly can actually have many benefits for us. It lets anyone living with dementia know that they are welcomed, that they can and will receive the help they require, it will by the sheer efforts of implementation help reduce stigma and stereotyping. And although having a “ Inclusive Community for all “, would be the ideal, if we start by embracing Dementia Friendly Communities and look beyond just the words, we can find many things in it that will help not only those with Dementia, but anyone with any type of cognitive impairment, the aged, brain injury, stroke survivors, and truly anyone with any type of impairment. So if by using the term and language ‘“ Dementia Friendly”, we can move and improve things not only for those living with Dementia, but so many others, then I should be willing and able to say this is an instance where I have to be able to look outside the box,

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I have to be willing to see that language is important, not only for the damage it can do, but for the good it can do. Sometimes we can get stuck, and while asking others to do something we too must be willing. So today I will start thinking about the terminology around “Dementia Friendly” a little differently. For it can and does actually depict that we are welcome, something that for a long time those with dementia did not feel. I am grateful that I have the ability to step back take a look at my own thought process my own viewpoints and be willing to look from another side.
It’s a great initiative, it’s why I agreed to be part of it, being able to look at the terminology from a positive viewpoint can only help enhance the whole process.
There is much advocacy and work that needs to be done for those living with dementia, but those of us cannot and must not become and do exactly what we are trying to change.
We must all no matter what organization we are affiliated with, no matter what we must be willing to collaborate and work together, embrace the uniqueness each organization brings to the table, to learn from each other, stop competing, start embracing, and be willing to say you are so strong in this piece we will help you in it, we are strong in this piece you can help us in it, supporting and working together, because truly this is not about one organization or another this about people living with Dementia, and if we make it about our organizations then we have lost the most important element, that being that it’s really about human lives. That we must never stand by and allow.



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Advocates Advocating Christine Thelker © 2020 Dementia

In the world of film making

I wrote in a recent blog about four films I had recently seen and how for the many good things they brought to light they were overshadowed by the underlying continued stereotyping which keeps stigma around dementia going. Today I am happy to share another brilliant blog written by a friend snd fellow advocate from Singapore. Doesn’t matter the country the picture greater continues to showcase the very things we want to be changed. Thank you, Tan Tan Ong (Emily) for this great blog.

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It is so important that filmmakers remember that they have a role and influence how the world views things like Dementia. If they always show only later stages of the illness, they never show the true depiction of living life with dementia before we get to those stages. I am grateful others like Emily are taking up the charge and demanding that they start to see us with a different lens. The lens they have been shooting through has become as outdated as the views they are putting up on the screen. We hope they will start working with more of us to make films which depict things that are important through the eyes of those living with the illness.

I am grateful that our voices are getting louder on many fronts where Dementia is concerned.

Thank you again, Emily.

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

My UFA guest piece

blogs.ufv.ca/chasi/2021/01/22/guest-post-living-with-dementia-during-covid-19/

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

Being Brave and Advocate to Advocate

Today I’m writing about two things, the first being about being brave. I had to learn to be brave after my husband died 15 years ago, I was young, it took a lot of bravery to wade back out into the world, to re-invent who I was, to build a new life a solo life. It was not at all what I wanted to do, I wanted to hide, I didn’t want to do life on my own, but finding my way to be brave, I eventually did, or at least felt like I was.

Then came my Dementia Diagnosis, again, my world was shattered, again, not wanting to do this journey, again having to face that the only way was with bravery. So finding my brave side scared much of the time, I put on the brave armour and sought out a new life once again, again as when my husband died, I was no longer the same person, dementia diagnosis did the same thing, how could it not, life as I knew it ended that day. ( I believe with 100% certainty that if and when we finally see the delivery of diagnosis change and provide the support given to others with serious illness and when we start helping people live with their illness instead of telling them to get ready to die, we will then have the ability to have our lives change at a slower rate and we can grow into living with our illness) but at this time that is not the reality, you are told get your affairs in order, there is nothing we can do. ( Those of us living with the illness now that is not the reality, there is much we can do, much that can help slow the progression, much that can help us live independently and maintain our lives for longer.) But instead, we are left to figure it all out on our own, which usually means a time of depression, fear and anxiety, but most ( sadly not all) find our way and find our way to brave our new reality. I have never met a more resilient and brave bunch.

I had to be brave again, this time on a much lesser degree, but still having to find the will to be brave enough again to wade into unchartered waters. I think maybe the pandemic will find many finding themselves in places that require them to go beyond what is comfortable and try and do things that require them to be brave. Today was that day for me, I managed one haircut in over a year, for me, who’s hair is baby fine, ( always has been), growing my hair to any length is near impossible. So today with inspiration from Susan Macauley and encouragement, I summoned up my brave and I cut my hair, After the first chop of the scissors, it was actually a freeing feeling, total abandonment. The results are the picture at the top of this blog.

I love it, it feels great, I was elated. Yes I know all the hairdressers out there are cringing, but with an immune system that is compromised, living in my bubble of one, means a trip to the hairdresser was not and likely will not be in cards for me for a long time to come. So I feel uplifted knowing that if I just am brave many things can happen.

Secondly, I want to talk about the advocates and all the great work they do. There is no glory in it, there is just the knowledge that maybe you can help make a difference for others.

It does provide hope and purpose, which is important for anyone, it is rewarding when you meet someone who is struggling and you are able to support them to finding hope and purpose. It is rewarding when you see any small and usually, they are small incremental changes happen. It feeds that part of ourselves that we all need and want to feel that we are of value, that we are contributing to society in a positive manner.

It also makes us vulnerable, if we are not willing to follow the scripts many organizations want us to we can be subjected to some hurtful discouraging remarks.

This is when it becomes so evident just how important our fellow advocates are to us. It is far more than just discussing the issues, planning what’s next. It is about friendships, laughter and tears. It’s about picking each other up when we no longer feel we can keep fighting for the change we so desperately need. It’s about being each other cheerleaders when we get those small wins, and being the mentors to those diagnosed who join us in using our voices and it’s about being that shoulder when we feel the weight of it all sitting on us.

I know I could not continue doing what I do without the support, compassion and caring of all those advocates I stand with. I only hope that I can give them as much as I have received.