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.
So this morning, I thought I was going to be productive, I did some work that I wanted to do, information sent off to Kate Swaffer, a very brief call with Tamara Claunch, an email to Dr. Nate Bergman, putting him in contact with Tamara and getting him lined up as a speaker for DAI. I first met Dr. Bergman, after he had heard an interview I had done, through that he researched me, then reached out to interview me, which is the above link, this interview happened in April, I’m happy to share it here. Dr. Bergman then researched DAI, and was amazed with what he learnt, and in a good way, he believes DAI, can be of value to many of his patients. But back to my day, I looked at my calendar three times, realized, no it wasn’t Brain Health Hub day, that was actually last week, grrrr, another mess up, oh well so my calendars clear, I can go get some much needed time in Nature. Wanting time near water, and trees, and I actually hugged many trees today, it felt good to hug them, I am not able to hug a person, I haven’t hugged anyone for so long not sure what will happen when I can, but hugging a tree that’s allowed, getting connected to the earth, how it felt so good.
So some beautiful, but want I can’t show you was tat shortly after arriving, my phone vibrating several times alerted me that I should maybe check it, a number of messages, the last one saying meeting starting in three minutes with the zoom link, oh crap, and this is a really really important meeting, so sitting on a bench, I took in this very important meeting, until my fully charged phone ran out of battery, being on zoom, using video, uses a lot of power, my phone died for the last bit of the meeting. Oh I feel like crap over this, I have the meeting scheduled for next week. I’m glad I was in the woods for it though, it was a difficult meeting, I actually had tears at one point. So after my phone died, continuing the walk was good for me. But the other thing that I wanted to mention that I forgot to earlier here, was that before I had thought I had a free day, I had been listening to my interview with Dr. Bergman, it hit me listening to it, how much difference there is from even a year ago, but go back just a couple years ago, and the decline was there glaring at me as I listened, and could hear the hesitation as I word searched, how often I had to stop to try to put my thoughts and words together. Then the mixed up and messed up meetings, dates and times. And yet I still get “ you don’t look like you have Dementia”. Just spend a day or two with me, you’ll never question that again. Oh well it all worked out, Dr. Bergman will join us for a DAI Brain Health Hub, I made most of the meeting, and I enjoyed all that Mother Nature had to often, and I got to hug a lot of trees.
Today starts another month, 2021 seems to be going by at a full gallop. It feels like time is racing, I was feeling as though it was just me feeling it but it seems many are. I wondered if it was because I have no real sense of time anymore but apparently even people without dementia are finding time going faster. I sometimes wonder if it’s because I just simply forget much of the pieces of the day, my short term memory is really quite bad know. I forget things as fast as they happen, sometimes they flutter back later other times not at all. My long term is quite good except in some ways, I have some very large completely blank spots, in other bits I remember bits and pieces but don’t recall all of the information such as why I was somewhere or who was with me or why I was there, but I will recall being somewhere and how it felt being there. It’s a strange way to be I suppose but not an uncomfortable way to be. I wonder does this all have something to do with why it feels as though time is racing by. We are still in lockdown, for someone living alone, it’s been a very long road. I wonder if I will or how I will manage when the world opens up, will the effects of living in a bubble of one start to show, will I no longer be interested in rejoining “ life as we new it”. Although my life had become more isolated before the pandemic, will I know be happy to just live in this complete solitude. I really do miss having a bit of a yard so I could dig in the dirt, that’s the one thing that truly is missing for me, and I miss being able to go somewhere where I could sit by the ocean, smell the sea air. Walk along the beach with my toes in the sand. That is where I have always felt my best. It seems I’ve lost sight of my original thoughts in writing today, but that’s ok too, just like three different times I forget to start my laundry the other day. The other thing I was thinking about was how some days I feel like I’m zoomed out, like it’s too much, too many meetings, then at other times I feel so fortunate and grateful for zoom, for surely life would have been unimaginable being alone and isolated for over a year know, like this last week, hosting several of our groups, much laughter and joy was shared, I attended a DAI webinar with Dr. Kozhi Makai, it was so uplifting, I had a few coffee dates over video messenger calls, some with friends who live in other areas, with my step daughter and my grandchildren, with a couple friends who live right here, but they have ensured to stay connected. So my heart overflowed. Do I ever feel lonely, of course I do, I have dementia, but I am not without feelings, if anything my feelings are in sharper focus than ever. But I acknowledge those feelings, like last night I was watching a documentary series on Netflix about love, it followed six couples journey through their lives together, I cried, I cried because it reminded of how being alone has not and was not my choice for my life, I miss my husband, I wanted us to grow old together, I watched that program, and I could picture and feel us together. I miss friends that have given up on the friendship, I miss seeing the kids and getting the opportunities to make memories with the grandchildren, I miss family members who for so much of life were with me, so yes the loneliness comes. But it doesn’t stay, because I focus on all the things I still have to be grateful for, the video calls and zooms. So although at times I feel zoomed out, more often I feel blessed that I live in a time when we have all this wonderful abilities to stay connected, with those who chose to stay connected with us. So as another month gets underway, and most of the last four of this year are already a muddled and foggy and of blank time for me, I will look forward to the coming month, with gratitude for I am still here to enjoy and make the most of whatever it holds.
Yesterday I had the privilege of taking in a webinar presented by Dementia Alliance International, the presenter Dr. Kozhi Sidney Makai, delivered a presentation so powerful, that when it ended I heard from many who said they burst into tears when the meeting ended. I have been fortunate enough to hear Dr. Kozhi Sidney Makai before, but this presentation came at a time when many of us whether we were attending as a DAI member, a guest or a professional, needed to hear this powerful message. It had such an impact on me I am still struggling to put it into words, what I can tell you is that when it is loaded onto DAI’s YouTube Channel, it is a presentation you will want to take in.
It came it seems at the perfect time, it’s sort of like that perfect storm is taking place, so much happening in the world, the pandemic, health lockdowns, political unrest, much uncertainty for people, alarming rates of homelessness, even organizations seemingly competing with each other instead of working together for the greater good, looking at how they can help each use the strengths each have to ensure the best outcomes.
Bring in this powerful presentation, for me personally, it came at a time, when amidst many changes in the effects of my illness, I have been struggling, feeling ineffective, feeling like no matter how much I try or want to do its not enough. Dr. Kozhi Sidney Makai’s presentation reminded me that Rome was built brick by brick, and for every person we touch through our work to make things better for all we do are building something brick by brick. He reminded all of the importance of DAI, in the world of Organizations in the Dementia Arena, the uniqueness and the amazing strength by those involved in DAI, to establish, maintain and grow this very global organizations, to see people from so many countries coming together to support each other, to build better communities, within our Dementia communities. DAI has a done what no one else has been able to. I was reminded that no matter how small my part in DAI is, it is important. I was reminded that for each person we reach whether we are reaching them individually or through our organization, we provide a ripple effect. That ripple will continue to spread.
I have so often said in my writings and interviews the DAI was life changing and life saving for me, yesterday’s presentation was affirmation of that. I am proud of the work being done, I am proud to watch so many of DAI’s members who go on to do incredible work in their own communities, cities and countries, for thats the ripple effect, 100% without a doubt its DAI’s crowing glory, watching all those incredible people doing so much. DAI has helped many go from broken to thriving, watching people find hope and purpose and then going out and spreading it further.
So to be reminded of the importance of doing and reaching even one, was an important message today, at a time when I was wondering how much longer could keep going. I was reminded that I just have to do what I feel I can, and it will be enough, and if I can mentor and help others along their journey, it is enough.
Each piece and twist and turn, every hard day, builds my resilience, builds my ability to make it through the never ending changes we must face when living with Dementia. It also leads to reminding me of all the other pieces and places in life where this is true.
I have many thoughts swirling from this presentation and I can not wait to share at our support groups, and beyond. I’m sure I will be be digesting and absorbing much for days to come.
My heart is filled with Gratitude and Thanks to Tamara Claunch for bringing Dr. Kozhi Sidney Makai to us, to DAI, for being so unique in the world of Dementia, for always striving to encourage and support members, and never ending appreciation of and to Dr. Kozhi Sidney Makai for bringing such an important message to us.
as a foot note: you can find Dr. Kozhi Sidney Makai’s books on Amazon
It’s 430 in the morning the moon is full and beautiful, I woke up feeling like I needed to capture some things here, I have to do them in these moments as they are here, or they forever disappear. Yesterday being my birthday became a day unlike any other. I have during my 62 years spend many birthdays alone, not normally by choice but just by life happening. I have learnt to do many things alone out of wanting to have and do a life well lived rather than not “because I’m alone”. So yes a covid pandemic, a lockdown for the second birthday during the pandemic, meant again I would be spending it alone. However it became a a birthday that I felt less alone, than I ever have in all my years of aloneness. I received more beautiful messages, notes, emails, texts, messages via messenger and Facebook, phone calls and video calls, drop offs at the door, a lot of very beautiful heartfelt moments, that at one point overwhelmed me and I sat in a beautiful puddle of tears. That so many people had taken time out to ensure that I knew I was cared for and thought about, that Even though I was “ alone”, I never felt alone for one moment yesterday.. I just had to stop writing for a moment and watch as the moon so bright, so very beautiful slipped behind the mountains, another new day and new week unfolding. Sitting there in my puddle of ( I must say Happy Tears), I was thinking about how that my dementia diagnosis has actually given me the gift of the family and friends who have decided to stick by me through it all, and added to it this dementia family, and together the most incredible family of people have entertained and became the very fabric of my being. It is the greatest blessings, the greatest of silver linings that my dementia has given, yes it has taken a lot, a life altered, a life so very different, a life with struggles daily to navigate the day, but the blessings of these connections, friendships that have deepened, new friendships formed, along with a dementia family that spans the globe, and some people think those are “not real”, friendships and relationships, but those of us that have them, know they are, we care deeply about each other, we laugh and cry together, just like with my friends and family. Had it not been for finding DAI, I may never have had the opportunity to gain these new friendships, these new additions to my “ family”, so I am and will be forever grateful for DAI, and it’s incredible role in my life. my friends and family here in Canada, wished they could make it so I wasn’t alone on my birthday, but as I said to my niece, I have learnt along time ago that I had to treat myself as well as I would treat others, this included making myself a nice dinner, having a small birthday cake, just because I was spending it alone did not mean, it had to be in sadness, and it most certainly wasn’t. I got to enjoy all the messages, the drop and runs at the door. I also received a beautiful picture and note from my brother and sister in law ( my late husbands brother and his wife), It is beautiful, and it also made me think about things which I sent a note back with what it made me realize. I’m including both here
You’ve survived another year!
I wish I could wish you perfect health, A loving husband, lots of kidsBut the Lord doesn’t seem to have thatIn store for you right now. But I can tell you I love and admireYour positive outlook, Your ability to see the bright side,Your fighting spirit,Your determination to change the wrong thingsIn the world where you can.We love you so much. Love Brent and Kay
Here was my response:
Thank you, this brought tears to my eyes, I don’t have perfect health, I feel I still have the love of a husband who watches me from afar, but I do truly miss him more than I ever say, the kids whose lives have been intertwined with mine , are all thriving and healthy good people so I’m grateful for whatever small piece I had in that, it brings me piece to see them all doing well, some I had with me for longer than others but I think that was part of Gods plan as well. So the Lord did not leave me without being touched by many and by great love, but right know he is guiding me in other directions, and the work I do know matters as well for many, I may not be able to get and see all the changes come to fruition but if I can encourage others, if I can continue to have faith that I am being directed and follow the path chosen for me life may not be easy all the time, but I am blessed in so many ways. So Thankyou for your beautiful words which helped me think about all those beautiful things. This is so special I may include it in a blog . Chrissy
So my birthday was beautiful in so many unexpected ways, and it was a beautiful reminder that what we have matters not, but who we are connected too, the people that touch our heart, it is love that matters, it is love that ensures that even if we are physically alone, we need not be alone, because our hearts are filled with love of those who become our family.
Wow, I have made it through another year and know I start my 62 second year. My second birthday that’s arrived during a global pandemic, in the midst of being locked down. I don’t remember last years birthday at all, I am not even sure if I was actually able to be out of bed at that time, the last year beginning in March of last was when I became very ill, and that battle continued for over a year. The silver lining was and is that I’ve made it, it should as all birthdays should be celebrated, for it is a gift when we are given more time. For many they think it’s “ just another year”, but living with dementia ( which is a progressive and terminal illness), I understand that each day is precious, and getting to add another year to my tally of years on planet earth truly is a blessing. I have felt a lot of changes over the last year, cognitively, and physically, but I can and do try to enjoy each and every good day I am given. It’s been challenging with the pandemic, it’s likely going to be challenging through the rest of 2021, but I am determined to see myself out the other side of this pandemic. I want to see what kind of shape the world will take on after the pandemic, will people be kinder and gentler, will we actually do the things that will help ensure a better quality of life, will people take better care of planet earth. Will our advocacy finally see some changes made, tangible improvements for people living with Dementia. Will we finally see collaboration. I am so blessed to have had some many lovely messages from my friends that I have been blessed to get to know and form these wonderful friendships with, so although I will be spending my birthday solo, I don’t feel as though I’ve been alone and I truly thank all of them for the gift of friendship. I’m excited for this evening because some of them have decided to a birthday celebration and all enjoy a meal together via zoom, a totally new experience and way to celebrate this day, it’s kind, it’s thoughtful, another blessing another silver lining provided by friends who didn’t want me to be alone on my birthday. So although it’s a rainy drizzly day outside, it’s a bright sunny day in my heart. I don’t know what is in store as I move into this new year of my life, I know longer plan for the future, the future is here right know in this moment, and although I do not plan for a future, I do still think about things that I hope I will stay standing long enough to take part in, like another conference where many of us can get together again, or for the first time, those face to face get together are so vital. I hope to put together my second book, I hope to still have it in me to complete work with some of the research projects I am part of, the researchers I have had the pleasure to work with are an incredibly talented people whose compassion and true desire to help provide tangible things to help us have a better quality of life, and I’m grateful to know and work with them. I hope for the day I no longer have to live hoping to die rather than have to go into any type of care home. The pandemic has shed a light on the issues, my fear is that they will only put a bandaid on it to appease people, but they won’t really fix it, I hope we can get to a place where we truly honour those who are vulnerable, whether that be due to ageing, or dementia or any other illness. I still have a bucket list that is incomplete, my road trip, to see friends and family, going to Ireland, and Greece. Taking the trip across Canada. I often wish I had someone to do many of these things with, maybe that’s still to come. So for today I will sit in Gratitude for another turning of the page, the beginning of yet another year of my life and in that I gratitude today I will be saying a big Thank You, to all my friends near and far who have ensured I did not feel alone today, and for all the beautiful messages, via, messenger, texts, emails and Facebook. Thank you all for being part of my life.
I feel like I’m frozen, stuck, unable to put thoughts into action, thought yesterday was Sunday, it was Wednesday. Not navigating things, having the thoughts but unable to put the pieces into place to actual turn the thought into actions or into tasks being done. Swirling about, feeling like I am being ineffective, unproductive, not being able to start or complete anything, the executive function part of my brain seems to be stalled at the moment, organizational skills have disappeared. Strangely the thoughts are all there but the ability to do is missing. Sure makes me appreciate those days of clarity, those days of doing things as I would have in the past. It erodes your confidence, your self esteem, these are the hard bits, the bits we often don’t talk about, the hard stuff, the changes we feel, others may not notice, but we do, sometimes these are blips, they come and go, just like the blood flow is at times good, somedays the function is good sometimes not, this week it has been the worst it has ever been. I am still considered to be doing well and managing well, but I can tell you this stuff is hard, it erodes and eats away at the very core of who we are. I know many who are having changes in their abilities at this time, I wondered how much of it may be from a delay of some sort of the effects of covid, of our worlds changing so much in how we do things, or did things, our isolation, many areas coming out of lockdowns, others deeply entrenched in them still. Although for many pieces and parts for those with dementia we have been living a life of more isolation since diagnosis but that was truly and is in fact much more so since covid, yes we used zoom etc long before most, but other areas of our lives have been greatly impacted, and sometimes I think we have not acknowledged that to the point we should. I have been working hard trying to make a difference for others living with dementia, advocating, doing all I can, but in all honesty, and if I’m honest, I don’t know how much more of the fight I have in me before I just want to withdraw and stop all of it. It’s getting harder and harder, and when little ever changes, seeing some kind of tangible change would likely give many of us a much needed boost to keep going to keep fighting. It’s doubly hard when part of your brain has all the thoughts of what you want to do and the other part wouldn’t unlock enough to allow you to actually do them, it’s exhausting. Or maybe it’s just this new piece of abilities changing and disappearing that I need to settle into, I’m not sure at the moment, my mind is like a bouncing ball these days, thoughts bouncing around, nothing ever coming of them, I hate feeling so unproductive. They say growing old isn’t for sissies, I can tell you living with dementia will test you unlike anything else, battling ones own mind, then battling all the compounding medical challenges that present. If I was able I would be somewhere near the ocean right know until all that is going on in this brain and body came to a new understanding with itself.
Yesterday was a no go day for me, my system, my brain was on a shutdown, so it was a day at home, just trying to get from the start of the day to the end of the day. I thought of many things that I would, could, may and wanted to do, none of which happened, as I was unable to put any of it together, this is what happens on a bad brain day. I was happy enough to just be at home, and just be, to not try to have to navigate anything. This came after having three or four lovely days of being able to go for a drive, to go on my bike rides, but this is my life this is my vascular dementia.
Today my day started with an early morning in person visit with my doctor, he had asked for the meeting, I always feel so fortunate that he actually puts thought into my well being. He doesn’t just sit and wait for me to have to or need to see him, he is invested in my health care. So it was an unusually long visit and considering how many don’t get to see there doctors at all as with the pandemic most things are done via video calls or phone calls, again a silver lining for me, I am always grateful and understand how fortunate I am. We went over tests he had done, then we discussed why he does some the things he does, it was great to hear him explain that he doesn’t want to ever miss something, because everything gets attached to my vascular dementia, something else I am grateful.
We had a lengthy chat about palliative care, life and death, we talked about my husbands death, and my mom’s death, he was the doctor for both, and he helped and worked with me to ensure they had the kind of end of life and death that they wanted. Another piece of my gratitude. It was a really good talk, we talked about my own illness and how at this point and given the last 14 or 15 months I have had with my health, understanding that they cannot fix my vascular system, their is no magic pill, no surgery, not anything, we talked about what happens why I have these good runs of days and sometimes months of really challenging symptoms and stretches of being so unwell, we were discussing my blood flow, both agreeing and understanding that when my blood flow ( almost simultaneously we said its like there is a dam and the gate is open the flow is good, the gate closes, and it randomly effects different organs, different areas throughout my body, depends which area the gate is closed stopping paper flow, This is also why there is such a challenge with inflammation.
We both agree that I do all that I can to help myself, both nutrition wise, exercise, sleep, all the areas that I am able, if I didn’t things would be far worse than they are, even though they have gotten worse, that is in essence how vascular dementia works and for each person it will vary, this is my vascular dementia. He wanted to have this discussion, to ensure that I know that he will continue to help support me through the downturns and difficult times, and if that requires hospitalizations as it has over the last year or two, then thats what will happen, but he also wanted to ensure that I am fully trying to get the most out of my good days when they present themselves, and that the monitoring and knowing when I should just stay put is a very important piece. this was a conversation about my quality of life. It did me a lot of good to have these discussions with him today. As for my shot, he just wants to ensure I get it once I am notified of my appointment, which hopefully I will get that notification this week, for sometime in May, in the meantime, keep doing what I’m doing.
I know it was a doctors appointment, it felt like a visit with a friend, and a much needed chat, and as I have had a lot of things weighing heavy on me recently, and I will write about those in another blog, today did much for me.
We talk so often about the medical profession and how and the ways they could do better, I know having who I have in place as a doctor, has been and is not the norm for many. He is a shining example of what good doctoring can do for someone. And talking later today in a meeting about many things one being to remember to look for and find the things that are good despite our diagnosis, I was thinking that my doctor is definitely one of the good things that I have.
My heart has been heavy, my soul weary, when I feel this way, when I feel like there is so much that needs to happen, so much needs to be done, yet not enough of us to carry the load, I know it’s time for me to go to that place where I can reground. So after a busy day with multiple meetings yesterday, wondering how much gas I have left in the tank, already having scaled back, yet somehow still determined to do more, at 930 this morning, with my little dog in tow, a picnic packed, I’m pretty self sufficient, off to the woods we went. it was the perfect day, the warmest day we have had, that glorious day that the chill has finally left the breeze, the sun on your skin, warms you, it embraces you, it gives you that hug that for so so long because of covid, you’ve lacked. Somehow it it melts away the heaviness, the tiredness, and you can feel yourself start to breathe. You can here the wind as comes up the valley, it’s so good to hear nothing but the stillness, the wind, the hawk overhead, not a car, no one talking, a chipmunk chattering, the leaves rustling. The crunch of the ground below us as we explore around, gathering wood for a small fire, the crackle of the fire, the air felt so renewing. I have watched over the last six months so many of us with dementia all feeling changes in ourselves, why so many of us, so seemingly simultaneously, has the underlying stress of covid had a bigger impact than we think or realize? Have we been feeling the effects of further isolation, further challenges to stay involved and connected? Many of us actually ended up busier, for most switching to online meetings has allowed more to be asked of us. Has all of the stress of trying to manage all of this all the while trying to just manage our day to day life during covid pandemic with a vastly misunderstood illness. I’ve had so many conversations, lately, I feel the strain, I hear the angst, I hear the wanting to do more but not managing it, then feeling bad it’s a terrible place for them to be. I feel much the same way, the last year has seen my health take to many hits, too many hospitalizations, everything I do is harder, takes longer, and often just simply doesn’t happen. So my happy place out in the woods, is where I go to recharge, to let my soul breathe, it’s what we all must do, find that place, if it’s the garden, standing in a steaming shower, shutting everything out and singing as loudly as you can. Do it, and reach out for those all important chats with a friend, share the fears, the tears, so the laughter can find its way again, we are normally ( at least those of us that I know) , who live with dementia are jovial and happy lot, but we get weary to, w e may be warriors, but every once in a while we need to take our cape off. I stayed out in the woods not getting home till just before five, I refilled, recharged, shut the world off. It was good for me, I will need to do more of it in order to maintain doing all the things I want to do. Supporting one another is vital, being compassionate understanding, encouraging each other to do things that require are good for us, even if it means we have to miss something along the way, looking out for each other. We are all tired, we are weary, we are so appreciative of those who help us, for without them the toll we are all feeling would likely be much more. I hope when this is all over we all get to reconnect, missing the conference in Singapore meant that much needed and important fac3 to face connections we get have been lacking. But after spending the day out in the woods, with Mother Nature I am reminded that their is a time of renewal, that everything has a cycle, spring evolves, hopeful for us all.
I wonder if the buzz in the last couple years around “Dementia Friendly Communities “, is actually walking a fine line between doing good and doing harm. For years we have been fighting for the human rights of those living with Dementia to be recognized, for segregation to stop, yes it stills happens every locked Dementia unit in long term care homes is against the rights of those living with dementia and it is segregation at its worst. It’s my opinion that it’s the most cost effect measure to say they are looking after those with dementia and that’s it’s for their own safety, without having to actually take the time and put the resources in place to provide and promote quality of life. So it’s actually about money nothing but. So I am working in my community on this idea of a dementia friendly community although I keep stressing it should be called an “all inclusive community”, not a dementia friendly which again is segregation from other groups with our communities. We don’t make MS friendly communities, Brain Injury friendly communities, Stroke friendly communities, so in fact are we doing more harm?, undoing so much work to stop segregation of people with dementia, by the simple choice of language. If you make an all inclusive community, it would encompass, the elderly, those with all physical and cognitive disabilities, including dementia. In order to ensure they are given grants and funds they must show they are creating dementia friendly communities, that doesn’t mean that it has to go so far as to label it that way within the community. You can create education for business, groups within the community, and the general public that can truly creat a community that can embrace all who live there without the actual label. We need to ensure because we get excited “that something” is finally being done for those with dementia that we don’t allow that fine line to be crossed. There is lots of work being done around “dementia friendly communities “ around the globe, I just hope there is enough input and voices of those with dementia who can and will ensure it doesn’t become another form of segregation.