Thanks for sharing your story. I haven't been in exactly your situation. But I can certainly relate to your experience with your Mum. You want to feel supported and have some help but real understanding of the problems you face is just not there. I think of you as someone who thinks outside the box, so I'm sure you will do that and find your own unique kind of solution. I know you are a great reader. I always recommend an amazing book to anyone looking after an older person. It is Contented Dementia by psychologist Oliver James. It's basically a different way of thinking about dementia, and has some very simple and practical ideas. It might help.
I'm only now reading this post Gina and I'm so sorry you are facing this with your Mum. MCI was Stewart's first diagnosis too and I was furious. It felt like a dismissal of everything we were experiencing and 'Mild' is a ridiculous definition. I contacted the memory team just over a year after Stewart's diagnosis as he was deteriorating and they did more tests and gave us his current diagnosis. I hope that your Mum doesn't get any worse but I do know how difficult life is for all of you now. I felt abandoned too but found support online on Facebook with an MCI group. If you need someone to talk to message me anytime. It's a massive learning curve and you have to do most of that yourself. Laughter is a great tool to help you keep going but do try and look after yourself. Keep some time for yourself, it's important. xx
I hadn’t realised that Stewart was also diagnosed with MCI initially and you are so right… it makes you feel as though you are exaggerating everything, dismissing your reality. I have appealed against the diagnosis and we are awaiting more tests but I’m not sure what it will achieve. I’m about to start looking for suitable care for her. I just want her last years to be happy ones. But meanwhile we do keep laughing!
I just discovered your art & one thing led to another & started reading about your life & your mom & I just have to reach out. First of all,I love your art! You are very talented!
I’m in the U.S. so I don’t know how the medical system works there but cognitive decline is so difficult and heart wrenching to deal w/because there isn’t a lot of help for it. I can share w/you how my brother cared for his wife once Alzheimer’s began & what seems to be working the best based on long term research/outcome.
He is a retired neurologist & that brings good & bad. Good in that he knew so much about the disease & bad because he knew so much about the disease. The best thing to slow the decline is lifestyle changes-exercise,diet,good sleep,music,art,anything to keep the mind active-NOT tv. & of course, patience. There’s a great book called “The Alzheimer’s Solution by Drs.Dean & Ayesha Sherzai & Dr.Sanjay Gupta(on CNN) book
Keep Sharp.” You can read most of what Sherzai’s say for free online. I don’t know how she is doing 9 months after you posted her story but I hope you’ve found better help. It’s pretty appalling what the doctors said to you. It is the long goodbye. But my brother chose to retire early so he could be w/his wife/soulmate when she still could remember, talk, walk, travel,etc. He had help at night because she roamed but cared for her during the day to spend as much time as possible w/her. I’m not saying you have to do what he did, but just do the best you can. He had family/friends come over to let him get out to bike or hike. He took her out everyday when possible & made sure she was dressed beautifully whether it was to the botanical gardens,symphony,family gatherings, museums,etc. If you’re interested check out his story on Utube-RIchard Franco/Your Fantastic Mind. While it’s a different situation between a spouse & a mother,you might find something that calls out to you. Remember you can’t do it all so ask for help from those close to you. Blessings, Rita🙏🏻
Thank you so much for reaching out and taking the time to write... and apologies it has taken me so long to reply. Your brother's story is very inspiring and I know I am lucky that Mum and I still get to laugh a lot. She is still living alone with my regular support but I know this cannot continue for much longer as she is resistant to having help in the home but I know she is not cooking for herself or showering any longer, although she does still keep herself clean. Ultimately I just want her final years to be safe and as happy as possible, with the dignity we all deserve. Take care and thank you again x
Hi Gina, I'm gradually making my way through all your wonderful and very honest posts, they are brilliant and I sympathise from the bottom of my heart with your situation with your mum. I've just joined Substack myself (haven't written anything yet) and wanted to thank you for the inspiration. x Love Lindsey x
Just catching up with everything Gina - so sad to read this and I am sending you much love - it is hard when it is our Mothers - and doubly hard with the appalling lack of support that we get from the "professionals"
Good to read that you can still laugh with your Mum, and the picture at the end is such a delight.
I feel your pain. Ive been through it twice so far - with my ma-in-law and then my Dad, and now its starting with my Mum. Little things, but I see the signs. I know this sounds trite, and almost impossible to achieve, but deep breaths (in the face of bureaucracy) and 15 minutes making art a day really helped me... Oh, and some good loud music!
Thank you Kate, sadly it does seem to be something that touches everyone's lives at some point. Wishing you well with your Mum... keep creating, breathing deeply and singing along to some good tunes!
I always enjoy your missives, Gina, whatever the subject.
Like Thelma, I can recommend the book Contented Dementia. It really helped us understand the many facets of this cruel and frustrating condition when trying to help our elderly aunt and we have employed many of the suggestions that help remove potential conflict. Knowing you, I’m sure you’re doing all the right things despite the opinion of the ‘professionals’ 😘
Thank you Kim, I really do appreciate the book recommendation. I still laugh a lot with my Mum and we are getting by but it's the doubt created by the 'professionals' that really frustrates me.
Flexibility is a necessity and a super power. I agree with you that Substack is a much more relaxed way of sharing stuff. Love your painting in this post. Wishing you a better week ahead.
I am really loving reading your thoughts. So much so that this morning when your name didn't appear on my emails, I was disappointed. I have just finished listening to Still Life, thanks to your enthusiasm for the book. And grandchildren really do bring a light to our lives, whatever else is going on.
Thanks for sharing your story. I haven't been in exactly your situation. But I can certainly relate to your experience with your Mum. You want to feel supported and have some help but real understanding of the problems you face is just not there. I think of you as someone who thinks outside the box, so I'm sure you will do that and find your own unique kind of solution. I know you are a great reader. I always recommend an amazing book to anyone looking after an older person. It is Contented Dementia by psychologist Oliver James. It's basically a different way of thinking about dementia, and has some very simple and practical ideas. It might help.
Thank you so much for the book recommendation Thelma, I'm definitely going to get myself a copy. And really lovely to hear from you!
I'm only now reading this post Gina and I'm so sorry you are facing this with your Mum. MCI was Stewart's first diagnosis too and I was furious. It felt like a dismissal of everything we were experiencing and 'Mild' is a ridiculous definition. I contacted the memory team just over a year after Stewart's diagnosis as he was deteriorating and they did more tests and gave us his current diagnosis. I hope that your Mum doesn't get any worse but I do know how difficult life is for all of you now. I felt abandoned too but found support online on Facebook with an MCI group. If you need someone to talk to message me anytime. It's a massive learning curve and you have to do most of that yourself. Laughter is a great tool to help you keep going but do try and look after yourself. Keep some time for yourself, it's important. xx
I hadn’t realised that Stewart was also diagnosed with MCI initially and you are so right… it makes you feel as though you are exaggerating everything, dismissing your reality. I have appealed against the diagnosis and we are awaiting more tests but I’m not sure what it will achieve. I’m about to start looking for suitable care for her. I just want her last years to be happy ones. But meanwhile we do keep laughing!
I hope your search for care goes well Gina.
I just discovered your art & one thing led to another & started reading about your life & your mom & I just have to reach out. First of all,I love your art! You are very talented!
I’m in the U.S. so I don’t know how the medical system works there but cognitive decline is so difficult and heart wrenching to deal w/because there isn’t a lot of help for it. I can share w/you how my brother cared for his wife once Alzheimer’s began & what seems to be working the best based on long term research/outcome.
He is a retired neurologist & that brings good & bad. Good in that he knew so much about the disease & bad because he knew so much about the disease. The best thing to slow the decline is lifestyle changes-exercise,diet,good sleep,music,art,anything to keep the mind active-NOT tv. & of course, patience. There’s a great book called “The Alzheimer’s Solution by Drs.Dean & Ayesha Sherzai & Dr.Sanjay Gupta(on CNN) book
Keep Sharp.” You can read most of what Sherzai’s say for free online. I don’t know how she is doing 9 months after you posted her story but I hope you’ve found better help. It’s pretty appalling what the doctors said to you. It is the long goodbye. But my brother chose to retire early so he could be w/his wife/soulmate when she still could remember, talk, walk, travel,etc. He had help at night because she roamed but cared for her during the day to spend as much time as possible w/her. I’m not saying you have to do what he did, but just do the best you can. He had family/friends come over to let him get out to bike or hike. He took her out everyday when possible & made sure she was dressed beautifully whether it was to the botanical gardens,symphony,family gatherings, museums,etc. If you’re interested check out his story on Utube-RIchard Franco/Your Fantastic Mind. While it’s a different situation between a spouse & a mother,you might find something that calls out to you. Remember you can’t do it all so ask for help from those close to you. Blessings, Rita🙏🏻
Dear Rita,
Thank you so much for reaching out and taking the time to write... and apologies it has taken me so long to reply. Your brother's story is very inspiring and I know I am lucky that Mum and I still get to laugh a lot. She is still living alone with my regular support but I know this cannot continue for much longer as she is resistant to having help in the home but I know she is not cooking for herself or showering any longer, although she does still keep herself clean. Ultimately I just want her final years to be safe and as happy as possible, with the dignity we all deserve. Take care and thank you again x
Hi Gina, I'm gradually making my way through all your wonderful and very honest posts, they are brilliant and I sympathise from the bottom of my heart with your situation with your mum. I've just joined Substack myself (haven't written anything yet) and wanted to thank you for the inspiration. x Love Lindsey x
Hello Lindsay, It's lovely to see you here and I'll look forward to reading once you start to write!
The situation with Mum is frustrating but at least she is relatively happy and we try to laugh!
Take care, love Gina x
Just catching up with everything Gina - so sad to read this and I am sending you much love - it is hard when it is our Mothers - and doubly hard with the appalling lack of support that we get from the "professionals"
Good to read that you can still laugh with your Mum, and the picture at the end is such a delight.
Thank you so much Karen.The support and good wishes I have received has meant so much to me and is very much appreciated.
I feel your pain. Ive been through it twice so far - with my ma-in-law and then my Dad, and now its starting with my Mum. Little things, but I see the signs. I know this sounds trite, and almost impossible to achieve, but deep breaths (in the face of bureaucracy) and 15 minutes making art a day really helped me... Oh, and some good loud music!
Thank you Kate, sadly it does seem to be something that touches everyone's lives at some point. Wishing you well with your Mum... keep creating, breathing deeply and singing along to some good tunes!
I always enjoy your missives, Gina, whatever the subject.
Like Thelma, I can recommend the book Contented Dementia. It really helped us understand the many facets of this cruel and frustrating condition when trying to help our elderly aunt and we have employed many of the suggestions that help remove potential conflict. Knowing you, I’m sure you’re doing all the right things despite the opinion of the ‘professionals’ 😘
Thank you Kim, I really do appreciate the book recommendation. I still laugh a lot with my Mum and we are getting by but it's the doubt created by the 'professionals' that really frustrates me.
Flexibility is a necessity and a super power. I agree with you that Substack is a much more relaxed way of sharing stuff. Love your painting in this post. Wishing you a better week ahead.
Thank you so much NIcky. Sometimes it can just help to share!
I am really loving reading your thoughts. So much so that this morning when your name didn't appear on my emails, I was disappointed. I have just finished listening to Still Life, thanks to your enthusiasm for the book. And grandchildren really do bring a light to our lives, whatever else is going on.
Thank you so much Susan. It means a lot just to know that people are reading and understanding. I hope you enjoyed Still LIfe!
I loved it and now I want to go to Florence!