45 thoughts on “Only a person with dementia understands…”
Omg this is so well written. I also aspire to spread awareness of neurological diseases. Do also check out my first post and follow me as well. Appreciate it ❤️
Absolutely right that we cannot fully understand, especially the loneliness. Thanks to your posts and your wonderful book “Whatever Happened to my Brain”, we can at least try to see life a little through your eyes. Thank you always for sharing your path with us xx
Great poem – I reckon I will find a way to share it soon. I do a weekly chat event that is all about ‘seeing and naming the elephant in the room’. I’m trying to get people to talk about things that are clearly there but nobody wants to mention. Its good to be able to see inside what you are doing and learn from you.
Hello again Kate
Yes I am keeping well. Down to a couple of days a week working now, but still doing as much (or more) reading as ever. I could do coffee soon if you are interested?
Good to hear that Jim… I’ll email you re coffee
Hello Kate
Coffee would be good anytime. I am down to working only Wednesdays and Thursdays these days so I have a bit of free ( and flexible) time. I see you are off to the Gold Coast soon for the Technology expo. It will be good to catch up with you.
Cheers, Jim
Does this mean you’ll be at that Conference Jim?
Hello Kate
Thanks for the latest bit of blogging. It has reminded me that it is time to update some of my ‘last requests’ and preferences and directives. You, as usual, make good connections between issues that sometimes slip past my attention.
I will give you a call and see when you are ok for a coffee – sometime next week perhaps.
No, I am not going to the aged care technology conference in Gold Coast, I just noticed that you were on the program.
Kind regards
Jim
Thanks Jim, glad this one gave you food for thought! Oh and sorry I missed your call! I’m away again next week, so maybe the week after? Kx
Hi Kate
Thanks for getting back to me. The next week will work for me. I will check my home diary and then get in touch with you. Looking forward to it.
Cheers
Jim
I think we walk a slippery slope. Living well with dementia truly is not always the case therefore we need to ‘tell it like it is’ while still finding the joy and happiness between the confusion and exhaustion.
Agree Myrna… telling it like it is, is never to elicit sympathy, just to show both sides of the experience of livign with de,entia. Some good days, some bad days, some in between, which in reality is not much different to life before dementia. xx
Damn right. Same amusement park, slightly different ride 😛
Not to diminish your thoughts, feelings, words … life is big and to truly embrace it with all it brings is no easy journey. Keep on keeping on Kate. K to the third power! You are an inspiration to all you touch.
Kate, I so value your insight into the way dementia feels from the inside… it helps me better understand what my parents are going through, and allows my compassion to grow roots. Compassion is such a general concept… we offer it wholeheartedly, but still seek the tools we need to connect and communicate this lovely energy. I tend to go overboard in worrying about my mother’s happiness and trying to “fix” her or fix the world around her; it’s more important (based on what you continue to share and from other people living with dementia) that we just support each other, let each other cry, encourage each other to laugh, and be as connected as we can be under the circumstances. Let go and let love. Thank you so much for continuing to share your journey, I hope you know how valuable this is to the rest of us….
“it’s more important (based on what you continue to share and from other people living with dementia) that we just support each other, let each other cry, encourage each other to laugh, and be as connected as we can be under the circumstances. Let go and let love.”
That’s it. And stop projecting our own suffering onto every tom, dick and parent 😉
Thanks for this post Kate. I have no idea what it is really like for Maureen to have dementia. My focus is to minimise her distress when the going gets tough and to enjoy the great times we have together.
As a care partner, I sometimes wonder if I’m supposed to feel ashamed if I feel a bit down, frustrated or sad when it gets difficult. I still care, respect, admire,support and try not to disempower.
Dear Evelaine, I’d suggest never feel ashamed for feeling a bit or even a lot down. It’s a very tough gig! I’ve also been a family care partner x 3 times. Both roles are difficult, as is dying from anything else, or supporting someone on that journey. The best we can do is perhaps to teach each other more about each other’s world, challenges and also joys. Take great care xxx
so true Kate-people underestimate dementia and i am sick of that-wish they werent. Everyone in my family(apart from me, my mum, and sister)undersestimate dementia and say “oh its fine not to take them to…whereever” or “he is fine by himself while i go and do the shopping or…going for a walk”. I feel so sad seeing him so confused and its breaks my heart-i wish people could understand dementia more, so they can have the best quality of life and the best plan. Love the quote thx kate-lots of love💜
Thx so much for your lovely comment Kate-that has made my day😊yes i am a very nice grandson, and although its heartbreaking seeing him like that, every moment is precious to me because i dont know how many more moments i have left with him-you cant predict what tommorow will hold for people with dementia. You are a very lovely person too😊
So heartbreaking, touching and true. This simple quote brought tears for a moment to my eyes babe, because of the truth in the simplicity of this quote.
This is why I always say only people living with dementia know what it is like and we who dont live with dementia must listen to only you as the true experts. You teach us to be better. With love always my friend.
Leah. Xx
Not that heart breaking in reality dear Leah… well, maybe on the bad days! More of a reminder to all it is not only tough for those who support us, that it is not only them who are struggling.
Totally dear Kate.
Knowing you and how you live your life with such gusto, shining energy, and generosity of spirit, I would suggest you are mostly the exact opposite. I know you have difficult days, and those days would be extremely despairing at times. But I also know you, and you aren’t despairing but inspiring.
I understand the importance of quotes like this because it’s crucial to “touch” people because it is hoped through empathy that more peole understand dementia through the eyes of those who live it. By seeing your perspective surely we can alleviate most of those difficult times people live through, with you, together.
Love love love. X
Love, love and more love… and see you VERY soon xxxxxxx
Totally. I can hardly wait. 🙏🏻❤️
Hi Kate:) it sounds very sad. But remember there are many people who do want and try their best to understands and help. I feel privileged to be one of those. I study Dementia Care through University of Tasmania, and I found your blog in my unit module recently. I am a big fan of you! You inspire many people and I hope it makes you feel more positive and stronger every day.
Kind regards form Sydney,
Beata
Hi Beata, it is not always that sad actually, but today, I was possibly over reacting to the many quotes and blogs I continue to read on how tough it is for care partners (carers/caregivers)… xx
It IS tough on care partners. And it’s also tough on people who live with dementia. I too get frustrated sometimes because we don’t need to make this bit of a rough patch into a pity party about who is the worse off. No one is worse off. It’s shitty. Life is shitty. We’re all in it.
Just because someone expresses the fact that they are having a hard time, doesn’t negate YOUR hard time. It just means every-fucking-body is having a hard time.
We could have been the relative of someone killed in a square in Somalia today. Or the parent forced to send his child to sea alone in an unseaworthy boat because that’s the only minute chance that child has to survive. Or the young Rohingya mother who watched her baby being burned alive after soldiers threw him into the fire.
There are way worse things than living with dementia or being the care partner of someone who lives with dementia. We are lucky in so many ways. We should be counting our collective blessings. Let’s maintain some perspective.
End of mini rant.
It’s not meant to sound like a competition Susan… but my gosh, I’m so sick of reading about how tough it is for carers. Time for everyone to understand it’s tough for everyone, on a daily basis, for most, from birth and with or without illness or caring thrown into the mix. Ps I’m ok with your rant, you go girl! We are actually mostly on the same page and it’s totally ok when we’re not xxxxx
“Time for everyone to understand it’s tough for everyone, on a daily basis, for most, from birth, and with or without illness or caring thrown into the mix.”
And you’re right, it would be boring if we agreed ALL THE TIME. Conflict and debate are healthy when they are used as creative springboards to expansive thought and better solutions. My opinion. You may differ of course 😛
Always a pleasure to inspire… and always ok to agree or disagree. That’s what makes life interesting xxxxx
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Omg this is so well written. I also aspire to spread awareness of neurological diseases. Do also check out my first post and follow me as well. Appreciate it ❤️
Absolutely right that we cannot fully understand, especially the loneliness. Thanks to your posts and your wonderful book “Whatever Happened to my Brain”, we can at least try to see life a little through your eyes. Thank you always for sharing your path with us xx
Thanks Trish xxx
Hello Kate,
Great poem – I reckon I will find a way to share it soon. I do a weekly chat event that is all about ‘seeing and naming the elephant in the room’. I’m trying to get people to talk about things that are clearly there but nobody wants to mention. Its good to be able to see inside what you are doing and learn from you.
Thank you Jim… and I hope you are well?
Hello again Kate
Yes I am keeping well. Down to a couple of days a week working now, but still doing as much (or more) reading as ever. I could do coffee soon if you are interested?
Good to hear that Jim… I’ll email you re coffee
Hello Kate
Coffee would be good anytime. I am down to working only Wednesdays and Thursdays these days so I have a bit of free ( and flexible) time. I see you are off to the Gold Coast soon for the Technology expo. It will be good to catch up with you.
Cheers, Jim
Does this mean you’ll be at that Conference Jim?
Hello Kate
Thanks for the latest bit of blogging. It has reminded me that it is time to update some of my ‘last requests’ and preferences and directives. You, as usual, make good connections between issues that sometimes slip past my attention.
I will give you a call and see when you are ok for a coffee – sometime next week perhaps.
No, I am not going to the aged care technology conference in Gold Coast, I just noticed that you were on the program.
Kind regards
Jim
Thanks Jim, glad this one gave you food for thought! Oh and sorry I missed your call! I’m away again next week, so maybe the week after? Kx
Hi Kate
Thanks for getting back to me. The next week will work for me. I will check my home diary and then get in touch with you. Looking forward to it.
Cheers
Jim
I think we walk a slippery slope. Living well with dementia truly is not always the case therefore we need to ‘tell it like it is’ while still finding the joy and happiness between the confusion and exhaustion.
Agree Myrna… telling it like it is, is never to elicit sympathy, just to show both sides of the experience of livign with de,entia. Some good days, some bad days, some in between, which in reality is not much different to life before dementia. xx
Damn right. Same amusement park, slightly different ride 😛
Not to diminish your thoughts, feelings, words … life is big and to truly embrace it with all it brings is no easy journey. Keep on keeping on Kate. K to the third power! You are an inspiration to all you touch.
Love youtoo dear Michael and yes, life is big, and embracing it is a great way to get through it, the positives and the negatives! xxx
Kate, I so value your insight into the way dementia feels from the inside… it helps me better understand what my parents are going through, and allows my compassion to grow roots. Compassion is such a general concept… we offer it wholeheartedly, but still seek the tools we need to connect and communicate this lovely energy. I tend to go overboard in worrying about my mother’s happiness and trying to “fix” her or fix the world around her; it’s more important (based on what you continue to share and from other people living with dementia) that we just support each other, let each other cry, encourage each other to laugh, and be as connected as we can be under the circumstances. Let go and let love. Thank you so much for continuing to share your journey, I hope you know how valuable this is to the rest of us….
Less ‘fixing’, more living and loving xxxxx
Yep 🙂
“it’s more important (based on what you continue to share and from other people living with dementia) that we just support each other, let each other cry, encourage each other to laugh, and be as connected as we can be under the circumstances. Let go and let love.”
That’s it. And stop projecting our own suffering onto every tom, dick and parent 😉
… or partner! 🙃😉
Reblogged this on Quinonostante.
Thanks for this post Kate. I have no idea what it is really like for Maureen to have dementia. My focus is to minimise her distress when the going gets tough and to enjoy the great times we have together.
You are doing a remarkable job dear Paul xx
As a care partner, I sometimes wonder if I’m supposed to feel ashamed if I feel a bit down, frustrated or sad when it gets difficult. I still care, respect, admire,support and try not to disempower.
Dear Evelaine, I’d suggest never feel ashamed for feeling a bit or even a lot down. It’s a very tough gig! I’ve also been a family care partner x 3 times. Both roles are difficult, as is dying from anything else, or supporting someone on that journey. The best we can do is perhaps to teach each other more about each other’s world, challenges and also joys. Take great care xxx
No doubt you are doing a great job ❤
❤
Yes, and of every life lived. We are all alone. And yet paradoxically all connected.
Lovely poem, Kate.
Totally agree we are all alone, and yet all connected xx
so true Kate-people underestimate dementia and i am sick of that-wish they werent. Everyone in my family(apart from me, my mum, and sister)undersestimate dementia and say “oh its fine not to take them to…whereever” or “he is fine by himself while i go and do the shopping or…going for a walk”. I feel so sad seeing him so confused and its breaks my heart-i wish people could understand dementia more, so they can have the best quality of life and the best plan. Love the quote thx kate-lots of love💜
You sounds like a very very very nice grandson xx
Thx so much for your lovely comment Kate-that has made my day😊yes i am a very nice grandson, and although its heartbreaking seeing him like that, every moment is precious to me because i dont know how many more moments i have left with him-you cant predict what tommorow will hold for people with dementia. You are a very lovely person too😊
So heartbreaking, touching and true. This simple quote brought tears for a moment to my eyes babe, because of the truth in the simplicity of this quote.
This is why I always say only people living with dementia know what it is like and we who dont live with dementia must listen to only you as the true experts. You teach us to be better. With love always my friend.
Leah. Xx
Not that heart breaking in reality dear Leah… well, maybe on the bad days! More of a reminder to all it is not only tough for those who support us, that it is not only them who are struggling.
Totally dear Kate.
Knowing you and how you live your life with such gusto, shining energy, and generosity of spirit, I would suggest you are mostly the exact opposite. I know you have difficult days, and those days would be extremely despairing at times. But I also know you, and you aren’t despairing but inspiring.
I understand the importance of quotes like this because it’s crucial to “touch” people because it is hoped through empathy that more peole understand dementia through the eyes of those who live it. By seeing your perspective surely we can alleviate most of those difficult times people live through, with you, together.
Love love love. X
Love, love and more love… and see you VERY soon xxxxxxx
Totally. I can hardly wait. 🙏🏻❤️
Hi Kate:) it sounds very sad. But remember there are many people who do want and try their best to understands and help. I feel privileged to be one of those. I study Dementia Care through University of Tasmania, and I found your blog in my unit module recently. I am a big fan of you! You inspire many people and I hope it makes you feel more positive and stronger every day.
Kind regards form Sydney,
Beata
Hi Beata, it is not always that sad actually, but today, I was possibly over reacting to the many quotes and blogs I continue to read on how tough it is for care partners (carers/caregivers)… xx
It IS tough on care partners. And it’s also tough on people who live with dementia. I too get frustrated sometimes because we don’t need to make this bit of a rough patch into a pity party about who is the worse off. No one is worse off. It’s shitty. Life is shitty. We’re all in it.
Just because someone expresses the fact that they are having a hard time, doesn’t negate YOUR hard time. It just means every-fucking-body is having a hard time.
We could have been the relative of someone killed in a square in Somalia today. Or the parent forced to send his child to sea alone in an unseaworthy boat because that’s the only minute chance that child has to survive. Or the young Rohingya mother who watched her baby being burned alive after soldiers threw him into the fire.
There are way worse things than living with dementia or being the care partner of someone who lives with dementia. We are lucky in so many ways. We should be counting our collective blessings. Let’s maintain some perspective.
End of mini rant.
It’s not meant to sound like a competition Susan… but my gosh, I’m so sick of reading about how tough it is for carers. Time for everyone to understand it’s tough for everyone, on a daily basis, for most, from birth and with or without illness or caring thrown into the mix. Ps I’m ok with your rant, you go girl! We are actually mostly on the same page and it’s totally ok when we’re not xxxxx
“Time for everyone to understand it’s tough for everyone, on a daily basis, for most, from birth, and with or without illness or caring thrown into the mix.”
We definitely agree on THAT 🙂
And thanks for inspiring a quick blog post: http://myalzheimersstory.com/2017/10/15/count-your-lucky-dementia-stars/
I love it when a post writes itself.
And you’re right, it would be boring if we agreed ALL THE TIME. Conflict and debate are healthy when they are used as creative springboards to expansive thought and better solutions. My opinion. You may differ of course 😛
Always a pleasure to inspire… and always ok to agree or disagree. That’s what makes life interesting xxxxx