when others don't understand....

[Aceso]

hi , i became a carer at home 18 years ago when my husband had a stroke , this resulted in central pain and all the other challenges stroke brings..at the time i stopped my part time work instantly , we had 3 small children..i went on over the years keeping it all together, and re educated , and returned to full time work when life had 'settled down', my husband had overcome huge brick walls but central pain remains and all the problems that come with it ....then mum got sick, while I managed to be with her and care for her, she was unaware of the problems i had with work, all my annual leave taken up, flexi hours to make up the time for her apps, even getting sick notes to be with her when she died and being told i had 2 days compassionate leave to bury her, the whole experience left me in tatters...then there was the family and my husband. i plodded on, changed my job and within 3 years my dad became ill, he too was going to die, asbestosis, he lived over the road, so he was nearer, mum was 40 miles away. my new employer was fantastic, understanding, supportive and i was able to be there at the end...then, 10 months later , it kicked off with my husband, more blood clots, legs, lungs and heart..i went part time then i was made redundant, council cuts. I felt exhausted with it all and clearly had severe reactive depression and anxiety....i decided to stay put, claim CA, and ride the storm again..so 16 months later, my husband has had 2 heart attacks, 2 lots of heart surgery, his own sad loss his own father, bereavement, depression, more pain, torn knees, wont operate , on morphine , but on the face of it , now doing OK , because i am home with him, he needs me here, when i am here, things tick over well, but once again we are back on benefits, in debt...BUT our children grown , grandchildren and a secure roof over our heads. we are very grateful for what we do have. I am 48 yrs old.. But now what?...i am again feeling...shall/should i return to work?, but i KNOW once i walk out that door...it wont be long till it all goes .... up again!! something is holding me back....i have joined a carer support group, amazing support, but when i talk to friends or others outside this group..i am told..'get a part time job', 'you cant wait for the sword to fall', 'you have a choice' ....am i the only one who is left feeling...you just don't get IT?...

[charles47]

Welcome to the forum, Maria!

It seems to me that part of you wants to go back to work - partly for financial reasons, partly for the sense that life isn't just about caring - but the rest of you is scared that things will start to get worse again and that is holding you back?

It's too easy for any of us to say "go to work" or the opposite. We're in different situations. With all your husband's health problems, things are not exactly likely to stay stable, and I wouldn't be surprised if you also feel just a little guilty for considering going to work when you also want as much time with your husband as possible. And then there's the way these things happen so suddenly - what would happen to your husband if you weren't there when something goes wrong?

That's a difficult hump to get over.

Increasingly, people are allowed - some even encouraged - to work from home, especially now most people have a computer and broadband. That might be an option that gives you the best (and worst?) of both worlds.

But only you know what you can and can't do - no one else.

[michael parker]

Hi and welcome.You are in a difficult position,having to decide which way to go.We all face it and there is no set answer.All you can do is look at your situation and make what you feel is the best thing to do,remembering that you have a life too.The hardest part can be living with that decision afterwards....whatever it is.Try talking to people who are/have been in a similar position.Caring is never straightforward,we all have our complications,needs,etc.You will find others on the Forum with things to say which may apply to your situation.The best advice i can give is to take your time,think about what is needed by everyone and try to come up with solutions that work.We all have to compromise,and living with what we have to give up/change can be hard,but as i said before,you have a life to live too.

[Debra Found]

No, people just don't get it. Even though I am also a carer for my husband I don't live in your situation & try as I might will not properly understand fully, though I do a bit.

Talk to people, sound out the job market & see what is out there. Look into the financial situation careffully, a part time job may not leave you better off. Talk to your husband - how does he feel? It took my husband a long time to admit just how much he does need me around. Although I now do a few half days at a voluntary job, I don't leave him all day. It works for us.

It is your decision. There is nothing wrong with being a carer & not in paid work outside the home.

[NanaNana]

I've never been an advocate for working from home. Then you're always 'at home'. If you have a job elsewhere, then you are forced to get out of the house and meet and talk to other people, which is really important and a good thing.

[Myrtle]

Working from home is fine, if you can sit down and get on with it without being constantly interupted, as you can fit it round what ever else you have to do, but it also depends what you want out of working because both caring and working from home can leave you very isolated while going out to work gets you meeting people and a change of environment.
And you have to consider how many hours you will need to work to be better off financially (remember you can earn up to £100 per week and still get carers allowance) and the impact it will have on both your lives.
If you feel something is holding you back, then listen to that feeling.
And no, others don't get it. All they see is the calm surface you present to the world, not the paddling like mad under the surface.

By the way, welcome

[Maxi]

Have a hug.all of you.Only,maybe,a carer can understand another carer.no two cases are ever alike,but often have some similar themes running through the carers story.

[no1mum]

Hiya and a warm welcome to the forum, I've moved your post over to new members as it's your first post, gives other members a chance to welcome you properly. There's plenty of support and sdvice to be found on here.

Karen

[Brindleboy123]

A very warm welcome from me too!

Bell x

[Robert]

Hello, Maria.

Yes, and welcome from me too

Thank you for telling us about what you have had to cope with over the years. Sorry its been so tough for you. I have no idea how you have got through it all. But I am so glad you have, and that you have done your very best for those you love. Can't do more than that, Maria. Yes, all of what you have described must have taken a lot out of you. More than I can imagine. And only you know how you feel right now. Only you know what is right for you. Others may advise you and say what they might do. Listen to others by all means. But listen to yourself first and last.

Good to have you with us here, Maria.

With warmest good wishes,

Robert

[bowlingbun]

Hi Maria,
In the last 35 years I've supported 6 relatives with serious health needs, so I know how tough it is to juggle everyone else's needs. For 20 years, my late husband and I ran a business from home, dealing with vintage lorry spares and restorations. It meant that we could be flexible about our working hours to fit round everyone else. In theory, it sounds great. In practice, it was awful for me, no escape anywhere from work, evenings were my busiest times for phone calls, taking orders etc. My husband thought it was great, being able to go for a walk if the sun was shining and working later in the evening, but he never realised the implications for me. It was also very lonely in many ways, hours at the keyboard writing a magazine concerning my husband's hobby, not mine. One of my jobs, long ago, was working in hospital admin., in Western Australia. I loved the constant hustle and bustle, and visits from the Royal Flying Doctor Service! After my husband died, I had counselling, and realised that I'd always been running around after everyone else, the "real" me seldom got a look in, I loved sewing but hadn't even had the time to make myself a dress for years. I wonder if this is beginning to sound familiar? When did you last do something frivolous just for you? Ask yourself why you want to go back to work, and what you want to get out of it, apart from money of course. Companionship? Escapism from caring? Only you can decide, but make sure it is something that you truly want.

[Beck]

There are so many arguments - both for and against working, but there are as many reasons for working as there are for not working.

For example, if you are wanting to work to earn and aren't really that bothered about meeting others face-to-face everyday, then there are plenty of jobs that you can do from home (such as setting up your own business) but if you are craving that interaction with others - then getting out of your home and into a more traditional job might be for you.

As much as we all may like to say "Do this" or "Do that", ultimately, it's not our decision to make - only you can make this sort of decision because only you know exactly how your circumstances are and how you'd juggle things should caree get better or worsen.

[Aceso]

blimey!! thank you all so very much for your posts and very warm welcome!!
each comment has hit a spot which has most definitely given me food for thought. I am very much aware now that any decision is my own..as the prime decision taker/maker over the last 18 years, I dither at decision when my own needs are concerned, something i know you will understand.
Yes , I will take my time. No, there will no gain, financially , part time, I have done the maths, and full time is not an option.
If the 'worst' were to happen, (and it has , !! , believe me ) my husband, would, and has, simply wait for me to come home! crazy but true!!
the holding back , i feel now is, I can take on any health professional, service, or authority when it comes to my husband or my kids, and not bat an eye...but the thought (and past experiences) of approaching an employer for time off , no matter how supportive, feel me with angst and anxiety.
its all the emotional, physical energy it takes out of you when there is a crisis , and on top of it, you don't want to let others down, hello guilt , my old friend . I just remember feeling like a hamster on wheel that could not get off!
your comments have reminded me , i am not alone , there are soooooo many people out there caring for a sick loved one, that until , others walk a minute, in our shoes, it is difficult to understand. I will not be too quick to allow their comments to effect me in future.
Im glad i have found this site, it time to stop and breathe, and listen to myself. Thank you

[Penny]

Welcome Maria. You are sounding a bit better already! Trouble is with being a carer is that the time just slips by and before you know it you're thinking "where did those 10 or 20 years go?"

I seem to have lost myself over the last few years too and am thinking I'd better hurry up and sort myself out or it will be too late. I have loads of interests and hobbies and things I really want to do and some of my friends "don't get it either". A couple of them only have themselves to worry about - no kids and no parents - so they can literally do what they want, when they want and wherever they want. I am quite impulsive and don't like planning things but because of my DD and my Mum I have to and often can't fit in "me" time.

Keep posting!

[poppett]

A warm welcome from me too.

We are a caring, understanding bunch here and hope we can continue to support you, whatever you choose to do, it must be right for you and your peace of mind.

Take care
Meg