working and caring - help!

[egg]

2/8/04

Thank you to all of you who replied to my first message.

Now Question Two – this is my big problem at present ( I do realise that it probably does not seem big to many of you as many of you are coping with much much more difficult circumstances than I am) but still what I do about this one could have big effects on us all as a family.

To recap (in brief) – I am 52 my hubby is 51 and has been diagnosed as having Alzheimer’s. He ahs been unwell for five years and not worked and was originally diagnosed with ME (that’s another story for later). So I am the wage earner.

Now my problem is

Whether or when to give up work?

His first reaction was to want me to give up work quickly so we could have some quality time together before his health deteriorated. However that would mean a serious drop in income and also all my friends keep saying things like ‘don’t do it until you have to, you need work to keep you alert and interested etc’.

My husband does not need me at home to look after him continuously at present but when I am at home he has a better quality of life as I can drive him out, organise cleaning or gardening together, etc etc and also we would like to visit a few places in Great Britain before his health deteriorates.

The other problem is that as a teacher, the holidays are fantastic and thank God his diagnosis came just before the big holiday, but in term time it is a nightmare as I work very long hours at school and then spend a lot of my evenings and weekends working as well or exhausted. I struggled through the last few weeks on pure will power. Since last September I have gone to work nearly every day feeling either stressed or ill or exhausted – can I go on like this? The quality of emotional support and physical support I can give my hubby in term time is poor. And if we have a ‘crisis’ like the lost spectacles or the telly tuning late at night it gets even worse.

The issue is further complicated by having a 22 year old and a 17 year old living at home both of whom need some support from me for reasons I won’t go into. And a mother and mother in law in 80’s living 100 miles away (although they are quite independent at present).

So sorry to ramble on but it is such a relief to pour all this out –

Does anyone have any experience of how to cope with working and caring?

Should I take some time off and ‘travel’ before it is too late?

Should I consider part time work?

If anyone has cared and worked I would really appreciate hearing how you coped and managed the situation.

Has anyone been a position to ‘fulfil some dreams’ before the person they are caring for ‘s health has deteriorated?

All suggestions would be appreciated and thank you for your time for reading all this!

Egg

 

[Anna]

Hello

This is all very new to me too, thank you Egg for posting your first message, it's given me the confidence to have a go too!! Like you, I've been watching this site and plucking up the courage to write to all you wonderful people.

My Mother was diagnosed with early/middle stages of AD in Feb of this year, I think we've known for a while, but it naturally came as a shock and I don't think a day goes by when I don't experience another emotion (I didn't think there were that many to have!).

I'm 26 and my Mum is only just 60, a lot of people I talk to etc have grandparents who have AD, but no one of my age seems to have a Mum/Dad and I find it hard because the 'Mother/daughter relationship is so different to any other one. There are so many things that are going on in my mind, sometimes I must admit they are selfish thoughts, anger etc and how things are effecting me, but I'm deperately trying to sort that out.

I've done the 'shying away' from it, not going to see Mum because I couldn't cope with seeing her behave in a way that I wasn't used to, but thanks to a chat with my local AD Society I'm totally changed and want to see Mum as much as possible (I live about 30 miles away with my partner).

Obviously things change on a daily basis and Mum has good days and bad days and we have to deal with those as and when they happen, I just wish there were guidelines written down, when 'this, this and this' are likely to happen, I think it's the uncertainity I find the hardest.

Anyway, I'm rambling on here, thank you all for reading this, hopefully I'll have the confidence to write again soon.

Anna

 

[Brucie]

Hello Anna

Welcome, and well done! I know the first post is the most difficult because you don't know what sort of response you will receive - I hope you will use the forum whenever you need it and, in time, perhaps when someone else needs YOUR advice. There are similarities, but the overall story is different for everyone, so everyone can help others.

You have got past the first difficult hurdle - accepting that your Mum is as she is, and engaging with her again. That is SO, SO difficult for some of us - me included.

It is equally important to do that.

There's a phrase we all use - "Day by Day".

Just take each day as it comes and deal with it. We none of us know what the next step will be. That's a fear, but it is probably a mercy as well. Don't expect that things that happen to others will necessarily also happen to your Mum.

Best wishes

 

[egg]

thanks anna

Hi

thank you for replying to my post and having the courage to join in - i was so nervous - not helped i suppose by doing this by 'stealth'!

it re-assured me that i wasn't being silly feeling nervous!

It is hard isn't it when everything goes pear shaped and possibly life is going to chnage - big time - i am trying as others have said to do some serious next step thinking and have begun some investigations into what to do next - peoples comments have been really helpful

thanks

egg

 

[thompsonsom]

option of giving up work

Before giving up work, you need to ensure you are claiming all the benefits you are entitled to like disability living allowance, carers allowance etc... it may also be an idea to check that if you have mortgage insurance cover, you may be covered for your payments, my daughter has informed me that if you are covered with Bradford & Bingley you can claim mortgage payments for up to 12 months if you have to leave work to become a carer to a close relative.
I gave up work to care for my mother in law as i found it too difficult to concentrate at work when my son was at home looking after her as she constantly needed re-assurance from me that everything was alright. you should also see about getting your husband into day care if you do decide to continue working as this is helpful as you can relax knowing he is safe. My mother in law now goes 3 days a week and although she thinks she is giong to work in london, she loves it there and looks forward to going each day, if we had been able to get her in for 3 days before i gave up work, i could have perhaps reduced my hours at work to fit in better, now its nice to get the break to do jobs i can't do when she is at home as she follows me around like a shadow. The sooner your husband gets into day care the better as he will settle in quicker and if like ours they have different days for people who are not as advanced so they can do more activities. I hope the advice you receive from your fellow members is as helpful to you as it has been to me.

janice

 

[egg]

thanks Helen

Thanks Helen for your very long reply,

I have found your comments and those of others so very very helpful and I have started to come to some decisions.

I think really I knew that I would have to make some big changes – the next question is not really I suppose ‘what’ but ‘when’.

I won’t really reply to each of your points one by one although they are very pertinent.

Oh dear rambling again.

One thing is I don’t think that you should feel guilty that you robbed your dad of his early retirement – if things had worked out differently for your dad and he had given up work earlier he could well have looked back and had regrets that he hadn’t given you those chances. We all do what we feel is the best at the time and although it hurts later when things don’t work out (like my dad dying very very suddenly indeed when I hadn’t seen him for a while) we can’t live our lives looking over our shoulders constantly thinking ‘what if tomorrow … ‘

Sorry to ramble - I suppose I am talking to myself here in that I know I shall have to make some mega decisions and I won’t necessarily get them all correct but I suppose that shouldn’t discourage me from making any otherwise I shall just drift along here going to work and struggling until some crisis occurs.

Anyway Thanks for 'listening'.

egg

 

[egg]

thanks janice

That's really helpful.

I too have a shadow.

It has taken me days to get to the PC on my own to do replies to all the kind people who have offered me advice.

I am trying during the school holidays to do some serious investigating of work options and support options.

I have really atken on board everyones comments - so thanks to all.

egg