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Introducing myself

pamann

Registered User
Oct 28, 2013
2,635
Kent
Hello maggie123 l feel sad that this winter we can not go to Madeira, as we have escaped the cold uk for 15yrs, l am grateful that we have been able to do this, life is very difficult now friends don't seem to phone or call anymore, we do have two caring sons, we have been married 50yrs my husband has Alzheimers every day is a struggle, ♥♥♥
 

Spamar

Registered User
Oct 5, 2013
7,070
Suffolk
I know you said you cannot face respite for your OH, but 'time off' will be of great benefit. I said the same until I had carer breakdown. For my own sanity and wellbeing I had to have a break. Although I didn't realise it whilst I was on the break, I was much better when I came to take up the reins ago. I only had 2 weeks but it was invaluable.
I know you have a lot more problems than I do, but I would very seriously consider it. My OH loved the home he went. There were many people to fuss over him and more things to stimulate him.
 

Judy2

Registered User
Nov 26, 2014
6
me too

Maggie, you sound just like me, I too have a loving family but not close by and my friends seem to have drifted off. It's very isolating and not good for our mental health, dealing with our husbands is hard work mentally and physically. I try and log on here every morning before my husband has got up, it's just something to do independant of anyone else.
We are not alone...

Judy2






Just testing the site. I am a carer for my husband who has frontal lobe dementia which he has had for approximately 5 years. I think I need someone to talk to at times as although I have friends, I have no family nearby whom I can share my thoughts with. It would be good to be able to talk to like minded people sometimes.
 

maggie123

Registered User
Jan 20, 2012
16
Every day struggle

Hello maggie123 l feel sad that this winter we can not go to Madeira, as we have escaped the cold uk for 15yrs, l am grateful that we have been able to do this, life is very difficult now friends don't seem to phone or call anymore, we do have two caring sons, we have been married 50yrs my husband has Alzheimers every day is a struggle, ♥♥♥
I can relate to 'every day being a struggle'. I know the feeling about missing some sunshine in the winter. I'm trying to think of some little treats I could partake of, and keeping fit by walking 3 times a week when the carer comes in for half an hour. Thank goodness for Talking Point. At least after Christmas we can think to start thinking about lengthening days and perhaps even some sun' - but you are right, life at times -stinks. :(
 

maggie123

Registered User
Jan 20, 2012
16
I know you said you cannot face respite for your OH, but 'time off' will be of great benefit. I said the same until I had carer breakdown. For my own sanity and wellbeing I had to have a break. Although I didn't realise it whilst I was on the break, I was much better when I came to take up the reins ago. I only had 2 weeks but it was invaluable.
I know you have a lot more problems than I do, but I would very seriously consider it. My OH loved the home he went. There were many people to fuss over him and more things to stimulate him.
Thanks Spamar, I'll keep that in mind!
 

maggie123

Registered User
Jan 20, 2012
16
Not slone

Maggie, you sound just like me, I too have a loving family but not close by and my friends seem to have drifted off. It's very isolating and not good for our mental health, dealing with our husbands is hard work mentally and physically. I try and log on here every morning before my husband has got up, it's just something to do independant of anyone else.
We are not alone...

Judy2
Thanks for your reply Judy 2. What sort of stage is your husband at? Will try to log on here more often, but my husband had been calling for me from 4.30am - for 4 hrs. I stayed in bed after getting up 3 times! All the best.
 

ppjm

Registered User
Oct 11, 2012
10
York
Hi Maggie

My Mum has just turned 65 and has Frontal Lobe dementia.

She was diagnosed around two years ago but I think she has had it for a couple more years before that.

I'm here if you need to chat. xx
 

tre

Registered User
Sep 23, 2008
1,353
Herts
Hi Maggie,
I am 62, my husband is 74 and has one of the rarer dementias PCA. He was diagnosed in 2008. As he needed more help I reduced my working hours until in September 2011 it became impossible for him to be left at all so I gave up work to become his full time carer.
My boss was very kind in allowing me to change my hours. I used to work three long days but eventually changed to do the same hours over four shorter days. Then he suggested I work through rather than have 3/4 hour lunch break so I was away from my husband for a shorter time. Those three quarter hour lunch breaks felt like the only time I had for me.
Now reading what you said it strikes a chord in that basically I seem to have disappeared. I do not think there is any remedy for this but sometimes I feel very isolated and alone as a carer. One of my husband's friends said one life has been sacrificed for another". For the time being maybe that is true.
I do try to make time for me but my life is so different from that of most people except for other carers. I do go to an AS carers group monthly. Sometimes it feels like being a carer is all I have left of me- there is no time for anything else.
My husband is the love of my life and if I did not care for him and give him the absolute best quality of life I can I could not bear it.
I do not have any answers really but just wanted you to know I understand how you feel
Tre
 

Chuggalug

Registered User
Mar 24, 2014
8,007
Norfolk
Evening, Maggie. Just popped in to see who was about, and it seems you've joined us, along with a crowd of others I've noticed recently joining.

So, how goes it? Are you getting any support? Sorry, haven't read all the comments before dropping this one in. Just wanted to wish you a warm welcome and hope you find Talking Point as helpful as the rest of us have :)

All the best to you.
 

bobmc

Registered User
Jan 29, 2014
13
Ilkley
Hi first time user

Hi all,

This is my first post, I'm a man of 59 and my wife is 68 - reading the posts I seem to be in the minority!

We've lived with this disease for the past 10 years and it now seems to be in the final stages ie I can't understand what my wife says any more and she can't understand me I try to tough it out but it's incredibly difficult. I try to cover for the things that she can't do but we get some very strange glances from strangers. It's good to finally "come out" and join the group - I've been a lurker in these forums for a while.
It's difficult to see your best mate slipping away!

All the best
Bob
 

esmeralda

Registered User
Nov 27, 2014
3,073
Devon
Hi Maggie and Bobmc, such difficult times and no easy exit as I'm sure you're dreading losing your OH's. Having to watch your loved person suffering and changing is unbelievably difficult and not something any of us could have imagined.

Being carers in such an intense situation does change you but the thought of being alone and dealing with grief is scary. I know just what you mean about 'losing' these precious years when we all had such plans for the freedom of retirement. I try hard not to think about it because I can become bitter and that don't help anyone, least of all me. It's not easy but I make an effort to remember that there is something for me to learn in every situation and I don't know what the future holds. That may not work for everyone i know and my situation is not nearly as difficult as a lot of people's who post on here.
In the end we do what we do because we truly love another person, even though when behaviours are horrible we don't necessarily feel it but still carry on caring. In the great scheme of things this must be significant. That's what I believe anyway. Hoped I haven't ranted too much:roll eyes:
Love, Es
x
 

WIFE

Registered User
May 23, 2014
856
WEST SUSSEX
My only advise to you all who are frightened of the future without your loved one - having just been through the "losing" stage recently - is to treasure every moment left be it good or bad and do not worry overly about what may be round the corner. That will come in its own time and meanwhile you are wasting the precious time you have left, with worrying. Make every smile, word, gesture count - they are gone so soon.

Wishing you all love and strength for the time ahead. WIFE
 

Chuggalug

Registered User
Mar 24, 2014
8,007
Norfolk
My only advise to you all who are frightened of the future without your loved one - having just been through the "losing" stage recently - is to treasure every moment left be it good or bad and do not worry overly about what may be round the corner. That will come in its own time and meanwhile you are wasting the precious time you have left, with worrying. Make every smile, word, gesture count - they are gone so soon.

Wishing you all love and strength for the time ahead. WIFE
WIFE; what a beautiful message. Thank you. And to Bob; I wish you all the strength and courage you can muster. Thinking of you all.
 

Optomistic

Registered User
Jul 24, 2014
123
Manchester
Hi Maggie,

My husband was diagnosed in July with Frontal lobe dementia a rare form of Alzheimers it was affecting his speech and memory. Hi is on Donzepezil and has improved in his confidence and speech a lot. I am 64 and he is 77 and i feel as though im not going to do things that i wanted to do.

We are going to Malta for a week in June i have asked my son to come with us for support as its a bit scary on my own. I also take him out everyday we go to bingo and shopping and see family. Im okay with it all as long as he stays active i dont think i could be shut in the house all day.

Hope to keep in touch i havent many friends so it gets loney.
 

truth24

Registered User
Oct 13, 2013
5,725
North Somerset
Sorry to read your post Optimistic. It sounds a good
idea to take a companion on your holiday as support. I know it's easier said than done as we are all terrified at the beginning of our journeys but try to take one day at a time and enjoy the happy moments. It sounds strange but it gets better before it gets worse as we gradually accept what is happening and sometimes the deterioration is very slow. Everyone is different but try not to let fear of the future take away your enjoyment of what you have now. Best wishes.
Sent from my GT-N5110
 

pamann

Registered User
Oct 28, 2013
2,635
Kent
Hello Opimistic my son came on holiday with us one year ago, it was such wonderful support, l had a bad fall and broke a bone in my foot, so grateful that he was with us, unfortunatly we can not go away again as my hubby has deteriorated so kuch, l do miss it, like you l take my hubby out every day as he can not stay in the house, much better when we are out. Take care