Why us

[Teddy1960]

My husband has early onset Alzheimer's. 57 years old and all our future Hope's and dreams have been taken away from us. Dont get me wrong, today is a bad day you see I am holding g down a full time job which I love but I come home and have to start again.

What lies ahead I am eo scared and can't bear the thought of losing him . I don't know I'd any other working partners have the same problem but the health professionals seem to cancel appointment at short notice assuming they can .

Someone from the carers contact centre has been trying to contact me but we keep missing each other. I am just juggling too many balls at the moment and feel exhausted.

The latest is the admiral nurse we were due to see tomorrow wants to rearrange so Mark says but can't get in touch tonight to confirm and I have booked the time off work tomorrow.

 

[BlueFox]

Hi Teddy60,
It certainly sounds like you and your hubby are having a difficult tiime.
I too have a full time job, I look after my Mom is I acknowledge it is a different relationship, but I to have encountered the same problems with appointments etc. I am trying to think of some of the solutions that worked for me, it isn’t easy but here a few .
Always give mobile number, don’t offer landline -most agency’s will call landline by default.i have missed appointment changes due to this.
If you can, take calls at work, better for all a short call at work than an afternoon off.
If you feel able, tell your line manager, see if your company has a carers policy
Get a POA in place.
Find a care agency that will take your hubby to routine appointments, so you can save your leave for the important stuff
Apply for Attedance Allowance, can help pay for the above
If the appointment is really difficult, don’t be afraid to change it
Request phone appointment,I have found this useful when talking to Moms GP

If I think of anything else ,I will let you know.
Take care, and good luck.

 

[WA123]

Hi Teddy60,
It certainly sounds like you and your hubby are having a difficult tiime.
I too have a full time job, I look after my Mom is I acknowledge it is a different relationship, but I to have encountered the same problems with appointments etc. I am trying to think of some of the solutions that worked for me, it isn’t easy but here a few .
Always give mobile number, don’t offer landline -most agency’s will call landline by default.i have missed appointment changes due to this.
If you can, take calls at work, better for all a short call at work than an afternoon off.
If you feel able, tell your line manager, see if your company has a carers policy
Get a POA in place.
Find a care agency that will take your hubby to routine appointments, so you can save your leave for the important stuff
Apply for Attedance Allowance, can help pay for the above
If the appointment is really difficult, don’t be afraid to change it
Request phone appointment,I have found this useful when talking to Moms GP

If I think of anything else ,I will let you know.
Take care, and good luck.

on the point of Attendance Allowance that Blue Fox has suggested this isn't available for anyone under 65. Instead you need to apply for PIP which has far more stringent eligiblity rules. If you paste this link into your browser you will be taken to a calculator where you answer a series of questions. You are then told how likely it is that your husband is eligible. http://www.c-app.org.uk/. If he is awarded it you can then claim a reduction in council tax.

 

[AliceA]

How very tough for you, as you will see this is a good place for advice and support. alice x

 

[Grannie G]

Why you indeed @Teddy1960. Sadly no one has any control.

It`s even more challenging when you are young enough to still be in full time employment and need to accommodate appointments, the work routine and caring within the same 24 hours.

All I can suggest is you get as much help as available and ask the appointment breakers for a little more consideration.

 

[Janie M]

@Teddy1960 , I can so relate to this. My OH was diagnosed nearly 2 years ago at 69, I'm now 62 and was working full time, but had to admit defeat last September. Like you said, I just couldn't juggle things anymore. I miss the working life, now have to rely on Attendance allowance and Careers allowance, a small pension from work. While it's better for him, I can't help feeling frustrated of how our life is now. Talk about the goalposts being moved. This forum is a godsend for letting out feelings no one else and understand. Take care. X

 

[padmag]

My husband has early onset Alzheimer's. 57 years old and all our future Hope's and dreams have been taken away from us. Dont get me wrong, today is a bad day you see I am holding g down a full time job which I love but I come home and have to start again.

What lies ahead I am eo scared and can't bear the thought of losing him . I don't know I'd any other working partners have the same problem but the health professionals seem to cancel appointment at short notice assuming they can .

Someone from the carers contact centre has been trying to contact me but we keep missing each other. I am just juggling too many balls at the moment and feel exhausted.

The latest is the admiral nurse we were due to see tomorrow wants to rearrange so Mark says but can't get in touch tonight to confirm and I have booked the time off work tomorrow.

When my partner Richard was diagnosed (he'd had symptoms for about a year before that) I was 58 and working full time, and although it meant giving up on my job which I enjoyed, at the back of my mind I knew that I would give up work in the near future, which i did. The stress and worry about Richard whilst I worked was just too much for me. I forfeited my pension and salary and receive carers allowance.In return, Richard and I had a good few years with holidays, days out, genrally having a bit of mini retirement, which has continued until a few years ago and looking back I am glad that I did it this way.Not to say I don't have financial worries for the future but, it has taught me to live for today. We survive on Richard's pension, so if he needs full time care, I will have to sell up and move forward the best I can (we are partners, not married).

 

[padmag]

Sorry posted

My husband has early onset Alzheimer's. 57 years old and all our future Hope's and dreams have been taken away from us. Dont get me wrong, today is a bad day you see I am holding g down a full time job which I love but I come home and have to start again.

What lies ahead I am eo scared and can't bear the thought of losing him . I don't know I'd any other working partners have the same problem but the health professionals seem to cancel appointment at short notice assuming they can .

Someone from the carers contact centre has been trying to contact me but we keep missing each other. I am just juggling too many balls at the moment and feel exhausted.

The latest is the admiral nurse we were due to see tomorrow wants to rearrange so Mark says but can't get in touch tonight to confirm and I have booked the time off work tomorrow.

before I was finished - We are all different and you may find that keeping your job works for you, if you can get help for your husband. All the best.

 

[canary]

My OH started showing symptoms 7 years ago at 57 years old. I continued working for as long as I could, but mum also developed Alzheimers and I couldnt juggle both of them with working too, so I took early retirement 3 years ago. I am reliant upon a reduced pension and carers allowance, but fortunately we have no mortgage.

One of the hardest things to accept is the loss of our dreams for retirement

 

[Guzelle]

It’s the same for me. I gave up work last July to care for my husband. I am 60 in March. I have a small pension from work and carer’s allowance. I worked in a school office and loved it I was there 25 years. I went part time in 2014 as he seemed to be struggling on his own but wasn’t diagnosed until 2016, I did carry on working for 2 years after that. I do miss work as I only worked 3 days term time. A close elderly relative died in August this year I miss her a lot. It feels a very lonely time.

 

[Philbo]

Hi @Teddy1960

I took early retirement at 59, in early 2010 - our normal company retirement age was 60 (though you could opt to stay longer). I did this partly because there were good financial incentives being offered but also as my wife and I wanted to do a bit more travelling etc.

For the first year or so, I spent a lot of time renovating one of our son's house (my wife was keen that I did this) and she spent the time keeping her mum company.

It was then that I first noticed some changes in my wife's behaviour and although we eventually started taking more holidays abroad, I realised that all was not well.

To cut a long story short, after about a year of persuasion, I managed to get her to see our GP, then almost another 9 months before we got the dreaded diagnosis of dementia (fronto temporal variant). That was in January 2014 (when she was 63) and it's been a fraught journey ever since. It was a good job I had retired as she quickly became dependent on me for everything.

We can no longer go on holidays together (only managed 2 after diagnosis and these were with our sons and grand children - safety in numbers). I went away to Majorca in 2018 with some friends, with my wife going into respite for the first time. All went well but it was a bit bitter/sweet, as although I desperately needed the break, it somehow didn't feel right leaving her behind.

My hopes and dreams have certainly been shattered - thankfully, my wife seems blissfully unaware.

Regards
Phil

 

[PalSal]

@Teddy1960
I finally quit working full time in 2015 (at 60) and left my parttime job in Dec 2017. I really feel for you. Juggling all full time work and a husband with Alzheimers is really difficult. My husband was 49 and I was 48 at the beginning of our Alzheimer's journey. (our youngest son was 11 and other three were at University at the time.) We are now 64 (me) and 65 (my OH)
By the time I got the help I needed I was well and truly fried. But I was not in the UK, so I do not know the rules and regs there and what kind of help you can get. I hope you will be directed by our great friends here on Talking Point on how to get the help you require from the UK system.
Good luck take good care of yourself......in the end you must still have a life, no matter how much you love your husband you are young and need to try and live and enjoy your life.

 

[Teddy1960]

@Teddy1960 , I can so relate to this. My OH was diagnosed nearly 2 years ago at 69, I'm now 62 and was working full time, but had to admit defeat last September. Like you said, I just couldn't juggle things anymore. I miss the working life, now have to rely on Attendance allowance and Careers allowance, a small pension from work. While it's better for him, I can't help feeling frustrated of how our life is now. Talk about the goalposts being moved. This forum is a godsend for letting out feelings no one else and understand. Take care. X

 

[Teddy1960]

Thanks for your post that's why I will hold on to my job till the bitter end. I would absolutely go down hill fast if I didn't have work . I work in a school so have relatively short days and school holidays . I feel very selfish but I have a life too and if we get the the point where he needs care I will use all mynsalary to pay for it if I have to xx how is your husband now?

 

[Teddy1960]

@Teddy1960
I finally quit working full time in 2015 (at 60) and left my parttime job in Dec 2017. I really feel for you. Juggling all full time work and a husband with Alzheimers is really difficult. My husband was 49 and I was 48 at the beginning of our Alzheimer's journey. (our youngest son was 11 and other three were at University at the time.) We are now 64 (me) and 65 (my OH)
By the time I got the help I needed I was well and truly fried. But I was not in the UK, so I do not know the rules and regs there and what kind of help you can get. I hope you will be directed by our great friends here on Talking Point on how to get the help you require from the UK system.
Good luck take good care of yourself......in the end you must still have a life, no matter how much you love your husband you are young and need to try and live and enjoy your life.

 

[Teddy1960]

How comforting is your reply. It's so refreshing to hear the words "you have a life too" The admiral nurse came out for the first time today and her words were "you might have to give up work " Is it normal but I resent someone telling me what I have to do . I am not ready to be a full time carer i need the mental stimulation that work gives me it's my therapy xx

 

[Banabarama]

Yes working is Challenging and Having two jobs an outside job and a home based job - is definitely wearing Sometimes I can’t wait to get home but at others I love being anywhere but here! I am hanging on as long as I can as I fear the financial hardship. But also fear being stuck at home.

There are wise, kind and experienced voices on this site, thank goodness. It’s a comfort.

You are very young Teddy1960. Also, PalSal, that must have been hard - so very you young and also with young children!

 

[Teddy1960]

Yes working is Challenging and Having two jobs an outside job and a home based job - is definitely wearing Sometimes I can’t wait to get home but at others I love being anywhere but here! I am hanging on as long as I can as I fear the financial hardship. But also fear being stuck at home.

There are wise, kind and experienced voices on this site, thank goodness. It’s a comfort.

You are very young Teddy1960. Also, PalSal, that must have been hard - so very you young and also with young children!

 

[Teddy1960]

Thanks so much you have made me feel so much better. I felt so demoralised this afternoon.

 

[kindred]

How comforting is your reply. It's so refreshing to hear the words "you have a life too" The admiral nurse came out for the first time today and her words were "you might have to give up work " Is it normal but I resent someone telling me what I have to do . I am not ready to be a full time carer i need the mental stimulation that work gives me it's my therapy xx

Oh dear. I can see why this was demeaning and demoralising for you. Completely. I found I was so often treated like this by social workers too. All sympathy. By the way, they were always telling me to give up work, too!
with love, Kindred.