Isolation

Ko Ko

Registered User
Aug 26, 2012
17
0
Hi are there any other peple out there who are gay my partner was diagnosed with dementia a few months ago at the age of 41 i am 50 i cant find any other person out there who has a partner who is gay with this awful condition. We feel as though our life has been taken away from us (bit dramatic) but being gay is hard enough but having a partner so young with it is awful would like to talk to see if there ae any other gay people out there or anyone who is willing to talk on this awful condition. Ko Ko
 

jaymor

Registered User
Jul 14, 2006
15,604
0
South Staffordshire
Hi and welcome to the forum. I can't help on the gay side of it but I do know your partner as my partner (husband of 46 years) needs the same care from the people who love them. Your partner certainly has developed the disease earlier than some. My husband was 62. But no matter what age it comes into your life the same things apply.

There is a section on this forum for lesbian and gay sufferers and their carers. Please keep posting where ever you want on the forum, there is so much help on here freely given to everyone asking.

Jay
 

CollegeGirl

Registered User
Jan 19, 2011
9,525
0
North East England
Hi KoKo and welcome to TP. Have you seen the section for lesbian and gay people with dementia on this forum? It's also for their carers. But you don't have to post specifically in that section of the forum - there will be lots of help everywhere on this forum, so post wherever you want to and there will usually be someone here to listen and talk to. Here is the link (hope this works!):

http://forum.alzheimers.org.uk/foru...amp-gay-people-with-dementia-and-their-carers

It's devastating for anyone to have their partner diagnosed with dementia, regardless of their sexual orientation, and I'm sure there will be lots of support offered to you, as it's been offered to me as a daughter of a sufferer. There are a lot of lovely people out there. Keep posting and let us know how you get on.

Take care x

Edit - oops, pipped at the post!
 

Ko Ko

Registered User
Aug 26, 2012
17
0
Hi and welcome to the forum. I can't help on the gay side of it but I do know your partner as my partner (husband of 46 years) needs the same care from the people who love them. Your partner certainly has developed the disease earlier than some. My husband was 62. But no matter what age it comes into your life the same things apply.

There is a section on this forum for lesbian and gay sufferers and their carers. Please keep posting where ever you want on the forum, there is so much help on here freely given to everyone asking.

Jay

Thank you for such a promt reply to be honest we are still trying to come to terms with the diagnosis but knowing other people are out there dealing with the same thing is a big help. Ko Ko
 

Big Effort

Account Closed
Jul 8, 2012
1,927
0
Hello KoKo,

First, I am so sorry that you and your partner have reason to come here.

While I am not gay, I too have had someone I love hit by dementia. I can imagine how you feel. You were smarter than me though, I waited 3 years (going it alone) until I visited the forum.

As others have already pointed out there is a strand here especially for gay people. However dementia knows no boundaries - my mother was intellectually gifted and it is gnawing at her brain, it robs young and old alike of independent life, and unlike Western society, dementia treats gay people the same as straight, real equality! Oh, I made a mistake, I think dementia prefers females over males, so there is gender inequality!

Sexual orientation aside, I think you will find some seriously experienced people here on the forum. I joined about 2 months ago and it has helped me to face what is. I was in denial, now I am not. I have grieved and cried and cried, and kind, knowing people have gently guided me along. I have signed Mum up for a care home, and again people here have shown me the route already travelled by so many. I act out and they catch me when I fall. This is a wholesome place and I am glad you have found it.

I look forward to hearing more from you. Whatever your state of mind, someone here knows how to support you. Best wishes, BE
 

rjm

Registered User
Jun 19, 2012
742
0
Ontario, Canada
hi KoKo
I'm sorry that your partner has gotten such a terrible diagnosis. I'm afraid I don't have much experience on the gay side of life, but I do have on caring for someone with early on-set dementia. Sharon was diagnosed over 8 years ago at age 48, I was 52. It has, naturally, been a downhill journey since then (but with many joyfull moments!). And no, i don't think you are being at all dramatic, your life (as you both knew it and expected it to continue for decades into the future) has been taken away from you. Make sure you take care of the legal and financial necessities early on, then love and live - don't put things off but enjoy each and every day as it comes along, for the sad reality of this disease is that the next day is unlikely to be a better one.
My best wishes to you both,


Hi are there any other peple out there who are gay my partner was diagnosed with dementia a few months ago at the age of 41 i am 50 i cant find any other person out there who has a partner who is gay with this awful condition. We feel as though our life has been taken away from us (bit dramatic) but being gay is hard enough but having a partner so young with it is awful would like to talk to see if there ae any other gay people out there or anyone who is willing to talk on this awful condition. Ko Ko
 

Ko Ko

Registered User
Aug 26, 2012
17
0
Thank You

hi KoKo
I'm sorry that your partner has gotten such a terrible diagnosis. I'm afraid I don't have much experience on the gay side of life, but I do have on caring for someone with early on-set dementia. Sharon was diagnosed over 8 years ago at age 48, I was 52. It has, naturally, been a downhill journey since then (but with many joyfull moments!). And no, i don't think you are being at all dramatic, your life (as you both knew it and expected it to continue for decades into the future) has been taken away from you. Make sure you take care of the legal and financial necessities early on, then love and live - don't put things off but enjoy each and every day as it comes along, for the sad reality of this disease is that the next day is unlikely to be a better one.
My best wishes to you both,

Thank you so much for your information yes your partner was young as well it is just nice to read how other people cope with this awful condition i agree that you have to enjoy each day it is so important i find it so hard someone so young as my partner has it i would rather it be me and she was well. We have taken care of the legal side of things that to was quite diffficult but had to be done do you have carers in or are you able to do care for your partner yourself regards Ko Ko
 

rjm

Registered User
Jun 19, 2012
742
0
Ontario, Canada
Hi Ko Ko,

Regarding carers: Apparently I can be quite stubborn and bullheaded, so for the first almost 8 years I did everything myself. It was only this past February, when Sharon could no longer manage going to the shops with me, that I finally relented and started to have carers coming in. It was very hard, the first 2 times they were here I didn't get any shopping done, just went to a park and cried and felt sorry for the both of us. But I have gotten used to it and have recently had them increase their visits, they now come 4 times a week for 4 hours at a time and I am starting to be a bit more social and enjoying some time to myself. In retrospect I would suggest getting some help as soon as possible and work it into your routine - however, I wouldn't have taken that advice! One of the problems with early on-set dementia is a lack of peer support for both the affected individual and the carer. We looked into an early stage group for Sharon but everyone was in their 70's and 80's. Likewise, in the carer support groups, I found those my age were caring for their parents or grandparents - that's a very different thing emotionally. So it was only when I found this forum that I found those I could really relate to.

Best wishes,
 

Ko Ko

Registered User
Aug 26, 2012
17
0
Thank You

Hello KoKo,

First, I am so sorry that you and your partner have reason to come here.

While I am not gay, I too have had someone I love hit by dementia. I can imagine how you feel. You were smarter than me though, I waited 3 years (going it alone) until I visited the forum.

As others have already pointed out there is a strand here especially for gay people. However dementia knows no boundaries - my mother was intellectually gifted and it is gnawing at her brain, it robs young and old alike of independent life, and unlike Western society, dementia treats gay people the same as straight, real equality! Oh, I made a mistake, I think dementia prefers females over males, so there is gender inequality!

Sexual orientation aside, I think you will find some seriously experienced people here on the forum. I joined about 2 months ago and it has helped me to face what is. I was in denial, now I am not. I have grieved and cried and cried, and kind, knowing people have gently guided me along. I have signed Mum up for a care home, and again people here have shown me the route already travelled by so many. I act out and they catch me when I fall. This is a wholesome place and I am glad you have found it.

I look forward to hearing more from you. Whatever your state of mind, someone here knows how to support you. Best wishes, BE

Hi BE thank you for your kind words and yes coming onto this site is a wonderful thing you can relate to so many things. We have had 6 years of being fobbed off by the medical professsion all the time my partner has been getting worse if it had not have been for a neuro- physiotherapist at the hospital we would have sill been treading in treacle as they say. My partner like your mother was very inteligent clued up and never missed a thing to see someone struggle with there words and memory is so very hard. I am glad that you have been able to cry at the moment i just feel totaly numb with it all i wish i could cry so i could get it out of my system a bit i am glad you have managed to find a good care home for your mom regards Ko Ko
 

Ko Ko

Registered User
Aug 26, 2012
17
0
Hi

Hi Ko Ko,

Regarding carers: Apparently I can be quite stubborn and bullheaded, so for the first almost 8 years I did everything myself. It was only this past February, when Sharon could no longer manage going to the shops with me, that I finally relented and started to have carers coming in. It was very hard, the first 2 times they were here I didn't get any shopping done, just went to a park and cried and felt sorry for the both of us. But I have gotten used to it and have recently had them increase their visits, they now come 4 times a week for 4 hours at a time and I am starting to be a bit more social and enjoying some time to myself. In retrospect I would suggest getting some help as soon as possible and work it into your routine - however, I wouldn't have taken that advice! One of the problems with early on-set dementia is a lack of peer support for both the affected individual and the carer. We looked into an early stage group for Sharon but everyone was in their 70's and 80's. Likewise, in the carer support groups, I found those my age were caring for their parents or grandparents - that's a very different thing emotionally. So it was only when I found this forum that I found those I could really relate to.

Best wishes,

Hi richard well i am quite stubborn to i have been looking after my partner for the last 6 years albeit we only had the diagnosis of dementia a few months ago we have been messed around quite alot. My partner has a carer come in 1st thing in the morning then for half an hour at lunch then half an hour at 4pm i work full time she has carers monday to friday when i come home i take over and of a weekend i do everything it is hard. It is good that you have started to go out i think we all need some me time we have been offerd respite which i am thikning about only if it is overnight at some point.
Ko Ko
 

rjm

Registered User
Jun 19, 2012
742
0
Ontario, Canada
Six years of care without a diagnosis! I can't imagine how stressful that must have been on both of you. In our case, once Sharon received the diagnosis life seemed to settle down somewhat. We knew what we were facing and could decide how to approach what lay ahead. I hope you can both find a similar peace now that you know where you are heading.
Providing the amount of care that you do while working full time must be quite a burden. I was fortunate and was able to take early retirement at around the same time as Sharon's need for care increased, had I needed to work for a few more years I think we would have had to consider a care home.
 

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