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

The Changing Times and Tides

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This Morning I woke for the first time in a number of weeks, feeling good both cognitively and physically, its not often both happen at the same time anymore. My physical impacts my cognitive and vice versa, so when you wake up and two hours later you have managed to be showered dressed, make up on for the first time in recent memory, it’s an incredible feeling.

The changing of our time did and has messed me up but because I was feeling ( actually on days like today I feel like a genius and super woman all at once). good, I was able to navigate through it with a greater ease and less frustrations. Considering earlier in the week I had no been able to manage simple tasks, even trying to navigate my computer was a no go. So today being able to reset my clock without having to call in help to do it feels amazing. seems simple right, well at one time those things were done without much thought, most days know they take a lot of brain power, often leading to frustrations and its hard to fight of the feelings of inadequacies that come with the loss and difficulties to do once simple tasks.

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When you lose your confidence for example I was once very good at spelling, I no longer am because words no longer lo0k familiar, in fact earlier in this paragraph I had to ask Siri to spell a word that I thought was for sure wrong, only to find I actually did have it right, but not trusting myself with the loss of abilities is another aspect that one must learn to work with. Loss of abilities, Loss of Confidence, Loss of friendships and family, Loss of careers and jobs, the list of losses starts to overtake at times feeling insurmountable and unbearable.

But then there are the gains, renewed hope and purpose, new opportunities ( although one must be brave enough to be willing to step into those opportunities), renewed and regained feelings of self worth, learning that you still have much to contribute its just in new ways, learning new ways to tackle old skills that now create frustrations, new ways of doing the old things is just another of the amazing and often over looked abilities of those living with dementia. Everyone always focuses on the things we are no longer able to do or struggle to do instead of cheering for all the things we can and are still doing. Maybe it doesn’t look like it used to, but in fact it is good for everyone dementia or not to learn new skills, try new things, it creates new pathways in our brains, so we should be celebrating all the ways we contribute all the new ways of doing things. I may not be able to put together a presentation as I once could, but I can stand up and give a speech know which I could not do before ( likely mostly out of fear). I loo longer have the fear, I speak my truth, if you don’t like it you don’t have to listen or read it, but I most certainly can read and speak it. I have a lot ( in fact I very seldom even try to read anymore), I can’t retain it, but I can write, two different functions of the brain. It makes it very challenging to try to read documents even personal papers, so often I just don’t, I try to do everything I can to make things less stressful for myself, creating less brain fatigue, which then allows me the ability to focus more on the important things, those being things I enjoy participating in, things like living and enjoying my days instead of spending them in a heap of tears and frustrations.

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Yes the tides of my dementia are changing but I have learnt and continue to learn to change with them. So whether the changing of the season or the changing of the tides, changes happen to us all, some of us are just handed the piece that will force us to adapt to change in different ways than others, for me it was my dementia diagnosis.

I do get really tired sometimes of feeling like I need to prove myself to others around being diagnosed, the “you don’t look like you have Dementia”, and “you seem to be pretty good to me”, by people who only see you when you are operating at your best and highest level, ( in other words your good days), or only spend maybe a half and hour to an hour every few months with you and then make an assumption, based on that short interlude. Although I must say I actually no longer care what others think, except for the fact that it would be nice if they were educated enough ( and not just think they are), to truly understand how damaging those kinds of judgments are, and that in fact that is the very thing that keeps so many people behind closed doors not wanting to or feeling like they must hide their diagnosis from people. We in fact don’t do that to others if they have MS or Cancer or Kidney Disease or a host of other illnesses, so we should not make those judgements on people living with Dementia.

The other piece that I struggle with a lot is that so much of the populations still do not understand that Alzheimers is one of the many types of dementia, so often people think they are not at all connected, yes the effects are different for each type of dementia ( Alzheimer being one), often for as much as they are different they have similarities, and early onset within any of the many types of dementia presents in its own ways. Using my voice and I encourage anyone with a loved one living with Dementia to help them use their voice, with writing with speaking, blogging, awareness is the key.

30 Years of Advocating has seen little change but it is coming and by helping people use their voices, you will help give them renewed hope, purpose, and ways to continue to have a meaningful life.

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

Are we really making a difference?

The last few days I have been asked on several occasions by others living with Dementia why if we have been advocating for 3o years has there been such a reluctance and the lack of real tangible change. It’s a hard question to answer, I’m not sure there is just one answer, there is as many layers to that question as there is to dementia.
it is surprising that after all these years people somehow still seem to think that Alzheimer’s and dementia are not connected, when in fact Alzheimer’s is just one of many types of dementia, it is just the most well known, in part due to the fabulous marketing done by many who make a lot of money off of it. Yes that’s right, money comes into the picture as one of the biggest reasons it has and is taking so long, there is money in having people be fearful of Alzheimer’s and dementia, from the Organizations that have become big businesses to the pharmaceutical companies, money is the driving force, not the actual well-being of the people living with dementia. If you start peeling back the sugar coated guise that most of them operate under you can clearly see, this is about business and money not actually the people living with the illness, other than that they use them to keep brining in the money. I know it sounds harsh, but it is a hard reality and one to which none of them will own up to.
On the other hand, it is not all doom and gloom for those living with dementia, for together the voices of people living with dementia have become louder each year. Partly I think due to the fact that people are being diagnosed earlier, and younger, so it becomes increasingly hard to keep the old image of what dementia looks like alive. As people are being diagnosed at younger ages, they are standing up using their voices, campaigning, advocating, demanding a place at all tables where Dementia is. From government bodies, to local groups, research, to medical, people are demanding change.
Although for many the change is not happening fast enough, tangible results are slow to see.
Yesterday, someone with dementia, who lives on the other side of the country from me said, please don’t stop using your voice, they said they can use their voice within their community but they no longer have their ability to use their voice at a national or global level. I said if everyone uses their voice within their communities, pretty soon the voices are so loud that they become part of the voices at all levels that no longer can be ignored.

Ignoring, or trying to silence the voices of those living with dementia because people believe that because their is no cure there is no point, or no hope, so why bother is as old a view as the disease itself. People once felt that way about cancer, about MS, and a multitude of other illnesses. It is true that there will likely never be a “cure” for dementia just by the nature of the disease, it is complex, but people can and do live for 25 or more years with the illness. So should we not be looking at care and quality of life instead of cure, just as people “live with Diabetes “, shouldn’t we teach people how to “ live with Dementia”. When people are diagnosed with Kidney disease, diabetes, heart conditions, cancer and others they are provide the “ tool kit”, to help them live with and manage their disease so they can live as fully as possible. They are offered continued resources to help them maintain and live as fully as possible. Is it not time ( it’s actually past time) that those living with dementia are offered the same. Our voices need to keep pushing for those types of changes. Many of us are more interested in having the resources to help us live fully, more so than we are in the cure, largely in part because we understand that “ a cure”, is largely unattainable. That does not mean that there are not and may not be the ability to have treatments and medications that can help with many of the symptoms of dementia, but there can any will never be “a cure” that can or will fit or work on all types of dementia, fie example my vascular dementia would need a different type of “cure”, than someone with the Alzheimer’s type of dementia. That doesn’t mean there can’t be treatments and programs that can help both.
Some of my conversations of late around all of this as also had conversations about how much more or for how much longer I and many others can continue to use our voices. We are tired, those before us grew tired and weary, when is time to say I’ve done what I can, time for others to carry the torch. Some can manage for years others not as long, all have an impact, but because all have dementia, all with varying types, all progress differently. So when is the right time to say, I’m handing the advocating over to others know, know I’m simply going to finish out my time living as fully as I can? It’s hard to walk away, we so desperately want to see that change happen, we want to feel as though somehow we have made a difference. It’s a question I have been asking myself a lot lately. 6.5 years into what I was told was a 3 to 8 year life expectancy after diagnosis, and I find myself facing some hard truths. My health is declining, much more than I like to admit,( that’s the warrior in me), but after this last hospital stay, after March and April’s round of Drs and Specialists, and conversations with them, the reality is that my “ good” runs, where I feel good and manage well, I was getting months at a time, and my bad runs, the time in between is becoming smaller. I can do less than before. Yes this was to be expected, yes they did say 3 to 8, yet somehow I felt I could maintain much better for much longer, in part because I have worked so hard to do so, as they say if I hadn’t I would not be here today. But somehow I still struggle with thinking I have and am much more able than is the reality. I have actually just had a new volunteer start, her name is Angie, and I am thrilled to have her coming to help me. There is a huge sense of relief that comes when you admit and settle into and accept that you need some help. I feel like having her come is such a gift to help me continue to do the things I enjoy and that keep me feeling and living a purposeful and positive life.
There will be many more decisions and conversations in the next month or so, living with dementia is always about facing new normals and it would be nice if in fact that we were finally given the tool kits that enabled us to do just that.

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

Tomorrow is International Woman’s Day

In light of it being International woman’s day tomorrow, I first want to give an update on me, yes me a woman who for 6.5 years has been doing all I can to use my voice to bring light to Dementia and all that it is and all that it isn’t.
So after my last five day stint in the hospital, I’m actually grateful as they are usually double that. I have many more appointments, tests, assessments during March and April. More things keep coming to light with each new piece, sometimes I wonder do I really want to know anymore? Do I even care anymore? Is it worth it to keep going through so much, when it will not change the eventual outcome? Yes these are questions I ask myself. One thing I have learnt in all of this is that it is better to be a realist that live with a false sense, so yes I need to know, yes I need to do these things, even though they take up much of what precious time there is, knowledge is power and if I want to continue to live my best life for as long as I can, then all the appointments and tests are essential so that I have the best knowledge I can, and my Doctors can so that together I can continue us to do my bucket list.
The big issues are my vascular system, when you have vascular disease, which is why I ended up with Vascular Dementia, there is a blood / oxygen flow problem. Those vascular issues are worsening, the blood flow to my organs are being impacted, resulting and explaining why I am getting intermittent times of feeling and functioning fairly well, to the crashes which leave me pretty much bed ridden if not hospitalized. It’s a lot to content with on top of the cognitive issues that make so many things more difficult know. I do less, much less. I am forever in that mode of starting over, fighting for those good days. But I am still here, so I am grateful for the things I am still managing to do.
Onto International Woman’s Day, a day we all whether we are woman or not should celebrate. Woman are the cornerstone of life, for without them, life would cease. We are or it is born into us part of our makeup, caregivers, we build the foundations of our families, and although much has changed over the years for woman those things are still largely true. But for my lifetime, I have watched as woman have tried to advocate for equality, to be paid equally to their counterparts, to be given the same opportunities and chances, and yet at 61 years old there has not been much change. Women are still undervalued and underpaid, passed over and looked over. “ The Old Boys Club” mentality still exists in too many circles. It bothers me because these same people are husbands and fathers, and yet they still accept these standards even for the woman in their lives. The “ pat on the arm or shoulder” doesn’t cut it, hasn’t for years, but then if that’s true we are we still having to fight so hard for equality. Yes men and woman are vastly different but their worth is not.
Then there is the Women and Dementia, woman are much more likely to be diagnosed with Dementia, please read Kate Swaffer’s Blog here https://kateswaffer.com/2021/03/08/international-womens-day-2021/?fbclid=IwAR1YSjqXX20YFipGgVhKXWW-MQ_0KRpTQtp_IodFYl80z3YJ8tBBB6X2YpU

I responded to Kates blog with these words “

As a widow. A woman, and living with Dementia this is so deeply and personally disturbing. As much as I try I can not understand how so many that see things, are aware of things find it acceptable to turn a blind eye#@chrissythelker”

It becomes increasingly difficult to understand why after so many years so much still is allowed to be acceptable or at least the blind eye approach is maintained as acceptable.
So for International Woman’s Day I want to urge you all to speak up for yourselves, for you daughter and your granddaughters, so that perhaps they will and can live in a world of full equality and inclusion.
I want to thank the remarkable strong woman, starting with my Grandma and my Mother for instilling in me strength and resilience, for it is the paths you walked, that were much more difficult than mine that started paving the way for woman to have a little more equality and rights, and know we and our children must carry the torch. To all the woman in my life who have inspired me, cheered for me, mentored me and walked along side me, thank you for sharing the journey of life and all that being a woman entails.


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

Finding the Fight

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I just spent another five days in hospital, I can’t tell you how often in that time and since I have heard ” but you look good”. People don’t often say well you look good on the outside but how are you really feeling on the inside. It is hard to explain to people when you live with a mostly invisible illness how tired our souls become, how weary we truly are.

We not only fight our physical illnesses, the cognitive issues, the physical pain, the other physical illness associated with our Dementia, we must also fight our emotional and mental weariness as well. Our Emotional and Mental weariness is not the same as Depression, although few understand that as well. I said to my doctor yesterday, I’m tired, my body, my soul is tired, I am getting wore out, I don’t know how much fight I have left in me. I have been fighting hard for 6.5 years to have and give myself the best life I could despite my diagnosis, despite all its challenges, and despite having to fight society to be understood for few know or understand any of the early onset issues we face. So I and many others fight with everything we have in us for every good day we can, we fight physically, emotionally and mentally, and truthfully there is no medication to help us with that fight. We have to find it deep within our souls, deep within ourselves. We are a strong group of people, I have never met so many people who are so driven to fight for themselves for their good days.

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So what happens when we reach that place, that place where our souls are weary, where we know somewhere within ourselves that we are losing the battle and that we don’t know how many more times we kind find enough fight to keep going? I am asking myself that these days, how many and how much more of ” the fight” do I have in me. I have much I still want to do and finish, but how much does my body and soul have left? Again not depression, its the reality of living with this type of diagnosis. I am happy, I am content, I find joy every day, even days like in the last five, but in all of that is this part of you at the core of you deep in your soul, where you look at how much more you can do, how much more can you keep yourself standing. My body is dying from the outside in, its not visible to you, but I feel it, I feel it in ways that as much as I try I cannot explain to you. I understand that when my husband was dying that he didn’t want anymore, he just wanted peace, I totally understand that. I understood when my mom said I’m done, I don’t want to do this anymore, her soul was weary, her time had come and she accepted it gracefully. I understand it at an even deeper level now that I did before although I always had a certain understanding. I always believed that a person knew when they were ready and when peace became more important than the fight. I understand it from the perspective of my soul. I know I am not done fighting quite yet, but I know the time is getting closer, to when I just will not fight anymore.

With every setback, with every complication it takes away little more, it makes it harder to fight to come back. My doctor said yesterday that this last year has seen huge challenges with my health and has been extremely difficult and this is another huge set back, more things to overcome. He knows I am getting worn out, he knows I will let him know when I have no more fight in me.

But I hope somehow before I am done, that I can make people think and understand that saying someone looks good, instead of being able to have the deeper conversations about how they really are, actually does them more harm than good. We place too much emphasis on how people look, then we make assumptions by what we see on the inside, rarely to people look beyond that anymore, deep seated conversations are things of the past. Everyone runs around trying to pretend they are ok, instead of being able to really speak about the pieces that are real, the things you keep deep within yourself, and yet those are the very things that truly make us who we are. I often wonder if that is because people are so busy being busy, that they no longer have the ability to even know how to look within themselves let alone be able to share in someone else’s reality, so its easier to just pretend we are all fine.

I hope that people will learn to be able to say to someone, its ok if you’re weary, we will sit with you in your weariness, and until you no longer want to fight we will sit with you and help you find the joy and laughter when that is what you need and then when you longer want to fight with you we will sit with you then too.

 
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Added: <p>But I hope somehow before I am done, that I can make people think and understand that saying someone looks good, instead of being able to have the deeper conversations about how they really are, actually does them more harm than good. We place too much emphasis on how people look, then we make assumptions by what we see on the inside, rarely to people look beyond that anymore, deep seated conversations are things of the past. Everyone runs around trying to pretent they are ok, instead of being able to really speak about the pieces that are real.
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Advocates Advocating Christine Thelker © 2020 Dementia For This I Am Grateful Living well with Dementia Silver Linings

Technology & Dementia Helpful or Hurtful

We are always asking for and looking for innovations in technology that will enhance our lives, and there have been many things that are and do help. But the flip side is, how much isn’t helping, causing us more stress and anxiety. In an attempt to use technology to improve our quality of life, to help us stay independent it has also created and became so complicated it is for many and for much of the time no longer helpful, it has in fact become hurtful.
When talking with and listening to many living with dementia, the idea of zoom to attend things and stay connected are vital, but in an attempt to keep people connected during covid, it has in fact become over used, more and more groups offering different things to attend, this idea is great, but it has hit the point where organizations must start working together to schedule things and make things easier to access, instead of overwhelming. People are feeling they are being forced to choose, feeling they will upset someone if they don’t take part in this instead of that, this creates stress and anxiety, none of which are good or helpful to those living with Dementia. We run the risk of having people drop out and away from all because it has become to much.
The solution is clear, it is time for a round table with all the group leaders of organizations who are and trying to do these online forums and events so they can truly be done in a manner that is first and foremost helpful to those living with Dementia, not just those running these organizations. Never before have we been at this critical time, all these groups and Organizations have a vital role to play, but they must sit at the table talk about how to help not hurt one another and the people they are trying to help.

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Another piece of this puzzle is all the social media outlets, great for keeping us informed, but they become less helpful and more hurtful to us when we have to try to fight pop ups constantly, struggle with trying to figure out how to operate these Social Media platforms. When we struggle to operate them, they are no longer helpful, they start creating anxiety, stress, which impacts our dementia and not in good ways, again we become overwhelmed and people end up more isolated because they drop off trying to navigate them. Phones fall into this category as well. These things not only effect people with dementia but people who are older, and people with many other disabilities. I could go into more details about the positives and the shortfalls but I think most of you could add to the list.
The other thing that is really coming to light is that the use of social media and texts etc are causing many to be offended, to take things personally or out of context. Sometimes just by the nature of our dementia and these things can become more problematic if we are fatigued, stressed, if our brains are tired, if any of our often many and varied health challenges are active. These create situations where we may not be processing things correctly, which means we feel and take things too personally, it cause stress and strive between people, we read more into a post think it’s directed at us, when clearly and often it may have little if anything to do with us, we may read more into a text than is actually there, we may overreact to a statement made. This not only causes stress for ourselves but the others, because they may not know how to bridge the gap of understanding because of their own processing abilities. This causes people to withdraw, drop friendships and not attend things that are actually import to their well being. So it is imperative, that we take the time to ask ourselves the important question of whether in fact we are part of the issue, and if our own ability to understand and process may have us taking things to personally and or over reacting. Often times taking a step back and knowing it’s ok to do that is important during those times, rather than react and then not know or have the capacity to figure out how to feel good about stepping back in and communicating with people, when we feel more able and less stressed. Having dementia at least until later stages does not exempt us from having to look at our own behaviour, pulling the “D” card is not OK, because if we make it ok for ourselves we make it ok for others.

Dementia creates so many varied day to day changes for us, we must keep in mind it creates the same for others. Offering kindness and understanding can go along way to stop the feelings of being picked on, having things directed at us, knowing sometimes people disconnect from us not because of anything we have done or not done but because they are taking a time out to look after their own well being for a time. So exhale, it is often not about us at all.
I hope that soon we will have the round table with all groups and organizations to do a full and complete collaboration and commitment to ensure we are all doing all we can in the way that will help all thrive.







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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.