Hi I care for my husband who has vascular dementia he,s 54 now but he was diagnosed when he was 50 , it would be good to talk to people going through the same thing
help i need someone to talk to
- Thread starter judypi9
- Start date
Dear Judy,
First of all I would like to say WELCOME to Talking Point. I hope you will find it to be informative, supportive and friendly. It has been a life-saver to me when caring for my late husband who also had a dementia.
I would suggest that you contact your local branch of the Alzheimers Society and request to meet with one of their representatives. These reps are a mine of information and support and I think you could really benefit from meeting people locally.
I will look forward to seeing you around the site and getting to know you and your situation.
Love
First of all I would like to say WELCOME to Talking Point. I hope you will find it to be informative, supportive and friendly. It has been a life-saver to me when caring for my late husband who also had a dementia.
I would suggest that you contact your local branch of the Alzheimers Society and request to meet with one of their representatives. These reps are a mine of information and support and I think you could really benefit from meeting people locally.
I will look forward to seeing you around the site and getting to know you and your situation.
Love
Hello and welcome from me too. Just bumping you up to the top again! 50 is so young to be diagnosed, but I know there are others on here in a similar situation. I'm 52 myself, caring for my husband who now is getting to the moderate/severe stage - but he is 30 years older than me, and will be 82 in June.
hello
hi and welcome to tp, i look after my mum who is 85 and has quiet bad ah now, i do not live with her but call at least 3 times per week and she comes to me all day on sunday.
she lives in sheltered accomodation. but they have just cut the wardon service to only 4 hours per day. you will find many like minded poeple here and lots of support. yours john.
hi and welcome to tp, i look after my mum who is 85 and has quiet bad ah now, i do not live with her but call at least 3 times per week and she comes to me all day on sunday.
she lives in sheltered accomodation. but they have just cut the wardon service to only 4 hours per day. you will find many like minded poeple here and lots of support. yours john.
hi again
is ashington near cramlinton, worked there for a week 15 years ago got lost every day as it is a town of roundabouts, could never find are way back to the b&b.
is ashington near cramlinton, worked there for a week 15 years ago got lost every day as it is a town of roundabouts, could never find are way back to the b&b.
Hi Judy
My husband is about 10 years older than yours but has only just been diagnosed with dementia (and the specialists are still arguing about which type it may be) having been slowly but steadily going downhill for the past 5 years. Even though I know the reality, I still feel bewildered and find myself constantly asking how this can have happened when he is still so young, when we had thought that we would have years of active life ahead of us, doing all the things that we had planned. I feel deeply for you, and for him. Life just isn't fair, is it. So I made the decision that I intended to make every day special in some way for my husband; to enjoy the things that we can now do together, and try to live each day as it comes without thinking too much about the longer term future ... and sometimes I even manage to accomplish this! On other days, like you, I need someone to talk to as well. So maybe we can talk to each other. I would like that very much.
My husband is about 10 years older than yours but has only just been diagnosed with dementia (and the specialists are still arguing about which type it may be) having been slowly but steadily going downhill for the past 5 years. Even though I know the reality, I still feel bewildered and find myself constantly asking how this can have happened when he is still so young, when we had thought that we would have years of active life ahead of us, doing all the things that we had planned. I feel deeply for you, and for him. Life just isn't fair, is it. So I made the decision that I intended to make every day special in some way for my husband; to enjoy the things that we can now do together, and try to live each day as it comes without thinking too much about the longer term future ... and sometimes I even manage to accomplish this! On other days, like you, I need someone to talk to as well. So maybe we can talk to each other. I would like that very much.
if you ever need someone im here. im chana.write to me in my personal inbox if you want. ill always be there for you. my mom died 6 months ago. my dad died from cancer 18 years ago. i know how you feel. i feel it too. believe me--its a hard road. to see someone you love go thru this. my mom went fast--less than a year, but i took her for granted. she was my best friend.she was smart, witty, and had such a worldliness about her.sometimes i think she knew more than the drs. ni always trusted her more. then all of a sudden she thought she was locked out of her house and someone was keeping her from going back in. from there it went fast.nothing worked. she died in a nursing home.---my mother. i loved her so. whenever i needed surgery shed call a thousands of times and say GOOD LUCK. after around 50 times id say MOM, DO YOU KNOW HOW MANY TIMES YOIU CALLED? shed answer DOES IT HURT TO WISH MY DAUGHTER GOOD LUCK? werll yesterday i had an eye operation and you know what hurts the most---the phone never rang. shes not here to say GOOD LUCK anymore.it was so quiet. my husband and i were talking about it and i cant stop crying. my eye will heal, but what hurts the most is that the phone was so quiet. it just never rang. it will never ring again. so yes--i understand. i know how you feel because i feel it too.so why dont you write to me and well talk? we can help each other.i pray for a cure for this horrible desease.my mom couldnt be saved, but 1 day maybe someone elses mom and dad will.remember this--you have your memories forever. no one can take that from you. i tell myself that. sometimes it works. sometimes it doesnt., but you write and well talk.i underatand and im so sorry.
Hi Judy,
I care for my wife, Sharon, who is now 57 and was diagnosed at 48 with Alzheimer's/frontotemporal lobe dementia. For the first few years I was able to continue working but for the past 5 or 6 years she has needed full 24/7 attention and care.
I hope you and your husband are still able to enjoy some of the happier moments of life.
Hi badietta, sorry to hear about your husband he,s still very young too, your right life's not fair we thought we would have time for ourselves once the children left home but it wasn,t to be as I'm now his time carer ,he can,t do anything for himself now but mostly I.miss the conversations and the cuddles , it will be nice to talk to someone who understands x
My dad has Vas. Dem
Hi Judy,
My dad came to live with us in May last year. He is in the very late stages of the mid stage. Dad is in denial and thinks it's just 'old age'. I know how you feel...desperate, frustrated and just dying to have a day out with my husband.
If you want to chat Judy, go to 'private messages'. I could do with a friend that understands the difficulties of this illness too. Try not to worry, keep your chin up!
CALLYDG
Hi Judy,
My dad came to live with us in May last year. He is in the very late stages of the mid stage. Dad is in denial and thinks it's just 'old age'. I know how you feel...desperate, frustrated and just dying to have a day out with my husband.
If you want to chat Judy, go to 'private messages'. I could do with a friend that understands the difficulties of this illness too. Try not to worry, keep your chin up!
CALLYDG
Hi, my husband is 58. I don't really know when his illness began, but last year we took steps to have him tested and it was confirmed that he has early onset dementia. As far as we can tell, he has been earmarked as 'mixed dementia' (we were told that the specialist at the Memory Clinic had said this in her notes to the neuropsychologist and GP - but we have never received a formal diagnosis in writing).
My husband is in the mild stages at the moment, but shows obvious signs of the condition. A recent 're-test' at the Memory Clinic showed that he had dropped down four points in the memory test compared to this time last year.
We try to remain positive and concentrate on all that he can do, rather than focus on what he can't - and it seems to help us get by.
More than happy to chat/help in any way I can from the short experience I have had with this situation
My husband is in the mild stages at the moment, but shows obvious signs of the condition. A recent 're-test' at the Memory Clinic showed that he had dropped down four points in the memory test compared to this time last year.
We try to remain positive and concentrate on all that he can do, rather than focus on what he can't - and it seems to help us get by.
More than happy to chat/help in any way I can from the short experience I have had with this situation
Hi, my husband is 58. I don't really know when his illness began, but last year we took steps to have him tested and it was confirmed that he has early onset dementia. As far as we can tell, he has been earmarked as 'mixed dementia' (we were told that the specialist at the Memory Clinic had written this in her notes to the neuropsychologist and GP - but we have never received a formal diagnosis in writing ourselves).
My husband is in the mild stages at the moment, but shows obvious signs of the condition. A recent 're-test' at the Memory Clinic showed that he had dropped down four points in the memory test compared to this time last year.
We try to remain positive and concentrate on all that he can do, rather than focus on what he can't - and it seems to help us get by.
More than happy to chat/help in any way I can from the short experience I have had with this situation
My husband is in the mild stages at the moment, but shows obvious signs of the condition. A recent 're-test' at the Memory Clinic showed that he had dropped down four points in the memory test compared to this time last year.
We try to remain positive and concentrate on all that he can do, rather than focus on what he can't - and it seems to help us get by.
More than happy to chat/help in any way I can from the short experience I have had with this situation
Hi Judy
I sort of still get the cuddles, but these are mostly just desperate and clingy, an over-emotional need from him. Oh God, the conversations - Yes, he was my best friend, never mind my lover (which has died now) and we talked about everything and now I also have no-one to talk to. It's so hard. Dementia is supposed to happen to elderly people, and here we are staring down into the pit of what? The destruction of our lives. I ask myself daily whether I can survive all of this. Truth is, Yes, I can. However, I would feel a bit better about myself if I wasn't also stuck with the Menopause as well! I don't know what age you are, but am assuming that, like me, you are a bit younger than the average carer, maybe you also have the rotten symptoms.
Like you I just want somone to talk to, who understands what is like not to be caring for an elderly parent, but to have to care for a spouse in, what should have been, the prime of their life.
God, I am just so grateful that we have found each other.
Please respond. I don't know what I would do without you.
I sort of still get the cuddles, but these are mostly just desperate and clingy, an over-emotional need from him. Oh God, the conversations - Yes, he was my best friend, never mind my lover (which has died now) and we talked about everything and now I also have no-one to talk to. It's so hard. Dementia is supposed to happen to elderly people, and here we are staring down into the pit of what? The destruction of our lives. I ask myself daily whether I can survive all of this. Truth is, Yes, I can. However, I would feel a bit better about myself if I wasn't also stuck with the Menopause as well! I don't know what age you are, but am assuming that, like me, you are a bit younger than the average carer, maybe you also have the rotten symptoms.
Like you I just want somone to talk to, who understands what is like not to be caring for an elderly parent, but to have to care for a spouse in, what should have been, the prime of their life.
God, I am just so grateful that we have found each other.
Please respond. I don't know what I would do without you.
hi
hi you said you were desperate to talk, many of us here responded, to try to help. some times i feel from your single responce the support falls on deaf ears. i hope this is not the case. if i am incorrect please accept my apology.
hi you said you were desperate to talk, many of us here responded, to try to help. some times i feel from your single responce the support falls on deaf ears. i hope this is not the case. if i am incorrect please accept my apology.
Hi Lynne and Richard
I have read both of your posts, along with those of Judy, obviously! It seems that the main thing we have in common are spouses with FTLD maybe mixed with AD. Do your spouses also have Atrial Fibrillation? My husband, who is asymptomatic, and has only just been diagnosed, may have had this for years and I have been reading that AF is very much linked with dementia. I would be grateful for any information about FTLD that you have.
Thanks
I have read both of your posts, along with those of Judy, obviously! It seems that the main thing we have in common are spouses with FTLD maybe mixed with AD. Do your spouses also have Atrial Fibrillation? My husband, who is asymptomatic, and has only just been diagnosed, may have had this for years and I have been reading that AF is very much linked with dementia. I would be grateful for any information about FTLD that you have.
Thanks
Thanks for the information, I was unaware of the link between AF and dementia. As more is known it seems the origins of dementia get more and more complex. Sharon has never had atrial fibrillation, as far as I know. I just looked up the symptoms and none of them seem to fit with her history.
The AD-FTLD combination seems to come up quite often. I do wonder how many people who are diagnosed with one or the other actually have both. I don't have much info on FTD beyond the basics. There is a FTD support group on-line, http://www.ftdsg.org/, but I have not yet spent much time there.
Hi Richard
I must say a very big thank-you to you - I have just read your post to my very first one (I thought that it had disappeared somewhere but found it a couple of minutes ago) and everything you say is just so lovely and thoughtful - and absolutely right. I was obviously having a very down day when I wrote about how angry I was feeling, they just come over me sometimes, those days when the pressure gets to me. Mostly I'm not like that! Fortunately Mike and I are still able to laugh a lot, albeit about things that are not complicated, and we socialize as much as possible which he both enjoys and is good for him. In the past he was aware of his growing limitations and worried about this a lot. Now, with his increasing lack of insight, he is able to enjoy life much more and, fortunately, we are surrounded by some very supportive friends.
Yes, the AF/FTLD/AD link is very interesting and I intend to follow this up with the Neurologist next time we see her (she already knows about Mike's AF - I e-mailed her as soon as we were told). Again, fortunately, we are in the catchment area of a University hospital which is involved in International research projects into dementia (her area is lumbar punctures at the moment) but who knows, this lady is ambitious, maybe I can talk her into branching out into a more complicated area of research. It helps that the Cardiologist is similarly ambitious! If one puts the 2 together perhaps there will be another Big Bang theory!
Gosh, I've just re-read the above and realize that I am almost at work again! Yet here we are rusticating in a rural area for the peace and quiet.
That's enough about me, tell me about yourself. I know that you live in Canada also in a rural area. Are you Canadian by birth? How did you come to find yourself involved with the Society? Are you just a member, or part of the TP team? What are your interests (apart from the love of your life of course)? Is Canada as beautiful as everyone says? We only know the area around Vancouver where we honeymooned and that is such a small part of a very large country!
I must say a very big thank-you to you - I have just read your post to my very first one (I thought that it had disappeared somewhere but found it a couple of minutes ago) and everything you say is just so lovely and thoughtful - and absolutely right. I was obviously having a very down day when I wrote about how angry I was feeling, they just come over me sometimes, those days when the pressure gets to me. Mostly I'm not like that! Fortunately Mike and I are still able to laugh a lot, albeit about things that are not complicated, and we socialize as much as possible which he both enjoys and is good for him. In the past he was aware of his growing limitations and worried about this a lot. Now, with his increasing lack of insight, he is able to enjoy life much more and, fortunately, we are surrounded by some very supportive friends.
Yes, the AF/FTLD/AD link is very interesting and I intend to follow this up with the Neurologist next time we see her (she already knows about Mike's AF - I e-mailed her as soon as we were told). Again, fortunately, we are in the catchment area of a University hospital which is involved in International research projects into dementia (her area is lumbar punctures at the moment) but who knows, this lady is ambitious, maybe I can talk her into branching out into a more complicated area of research. It helps that the Cardiologist is similarly ambitious! If one puts the 2 together perhaps there will be another Big Bang theory!
Gosh, I've just re-read the above and realize that I am almost at work again! Yet here we are rusticating in a rural area for the peace and quiet.
That's enough about me, tell me about yourself. I know that you live in Canada also in a rural area. Are you Canadian by birth? How did you come to find yourself involved with the Society? Are you just a member, or part of the TP team? What are your interests (apart from the love of your life of course)? Is Canada as beautiful as everyone says? We only know the area around Vancouver where we honeymooned and that is such a small part of a very large country!
