Coping without a support system

BritAbroad

OH had an accident which left him virtually housebound. He'll get better, eventually, but it will take months.

In the meantime, I have to take care of him and do everything. We don't have anyone who can help out on a day to day basis, and I'm struggling to cope at times. I feel overwhelmed by it all and am pretty exhausted. Everything is a challenge - even getting the wheelchair in and out of the car is hard. There is no social services-type support system here, and I also have to try and deal with the all the medical bills, some of which I suspect are going to be difficult to sort out.

I guess my question is, for those of you who are carers, how do you cope? Are there any practical tips you can give me to get through the next few months?

Nicki

It is tough but hang on to the fact that it is (relatively) short term and that each week or month which goes by the task will get easier.

My tips: encourage him to be as independent as possible. If he can manage a wash by himself by sitting in his wheelchair at the sink, then don't try to struggle with helping him bath or shower daily. If it takes 2 hours to get him up and down stairs, could you aim to live on one floor until his mobility is better? If anyone offers help, grab it even if all they can do is a supermarket shop for you or a spot of sitting with him while you have an hour or two off.

Without knowing which country you live in or the exact nature of his disabilities it's hard to be more specific though. You might want to post some scenarios you find hard and people might have express advice.

I don't underestimate the mental toll. I have a disabled teenage child who needs help with all aspects of personal care and full time supervision and it is tough sometimes.

kingfisherblue

I know it sounds really obvious, but make sure that you care for yourself as well. Caring for someone with a disability can be tough, and you are no use if you become ill yourself. So try to eat properly, get regular sleep, relax when you can, and have a break if at all possible.

I find that writing a letter every now and then, to no one in particular, helps me. I just vent my frustrations and problems on appear, then rip it up afterwards. For me, it is very therapeutic. It doesn't make problems go away, but it puts things into perspective, which makes difficult times more manageable.

Look at things to make life easier - instead of a supermarket shop once a week, would it be less effort to wheel your OH to local shops every couple of days? Or can you get a ramp to wheel the chair into the boot of your car? Would an internet shop be more manageable? Don't stop going out though, just adapt according to need. For me, it is easier to use a wheelchair from the supermarket than to take my son's own chair. Or we go to places where I can park outside and he can manage the short walk into the building (library, community centre, caf!s, etc).

Seanymph

Knowing what is about is a big help. similar to the person above I learnt that the local shopping centres leant you a motorized scooter and you got free parking.

It liberates the local town because you can go anywhere in it with one for several hours.

Take time - even if it's 10 minutes.

Walk - if you can. It's hard to know without knowing how poorly he is, but can you leave him with a cup of tea for half an hour? And walk for 30 minutes.

Give him a chance to care for you. Be that helping you work out what's for dinner, or supporting you by helping with your hobby, giving you a foot rub. He will be struggling with this as well, and it will be important to him to still feel of value to you.

Take things slowly, be kind to each other - it isn't something to fight, it's something to live through.

And it will pass.

Whereabouts in the world are you? Is there a forum for your county and ex pats there?

My husband had a brain injury last year - he was in France at our house recently and posting on brain injury boards I networked into an ex pats board for people in france and there was help there for me (He made it home on time, but I hadn't heard from him for a week!).

Breathe in and out, post on here, find a board which focuses on whatever is affecting him, and take a bit of time for you too.

jackyann

Sending best wishes as well.
Forgive me if you have tried this - but could you contact your nearest consulate / embassy? I assume you still have British nationality from your username.
I don't expect the embassy staff to be rushing round (!) but they usually have contacts for ex-pat organisations, even in some countries, charities, that offer support. This won't be the first time they have had this question. They may also know if there are any tips for getting the best out of local services, or if there are any UK organisations that offer some sort of help.
Good luck

ChasingDreams_3

Hi OP,

Like others have said, if you post specific scenarios it might be easier to advice. Where are you and what are the things you struggle with most?

I am a full time carer for my OH who is in a wheelchair following an accident. We are both in our thirties and although we have friends, our lives are very different from theirs. Add to this the fact that I relocated here from abroad a few years back, and so have virtually no support network for myself. Lots of people to be friendly with, but no friends as such. One thing I have noticed is that people stick to whatever they can relate to most and so I fall through the gaps - part from being foreign and part from being a carer that has different priorities.

I like kingfisher`s idea of writing a letter and like others have said - make time for yourself. I am bad at accepting help - so I know how difficult it is to try and do everything yourself. Sometimes just a nice walk to clear my mind does wonders.

Sending lots of hugs and well wishes.

CD x

Racheldevon

Hi


Although you're not in the UK, I wondered if this site might help in terms of info/support etc
http://www.carersuk.org/


http://www.mind.org.uk/information-support/helping-someone-else/how-to-cope-as-a-carer/


http://www.carers.org/

Mr_Toad

I know this might be obvious but just in case.

Are you trying, as best you can, to live the same life that you had before?

People often get adamant that they're going to carry on as 'normal' and then work themselves into the ground doing it.

Try and make things as easy for yourselves as possible, even more so as the problem isn't a permanent one.

trailingspouse

Keep things simple, and focus on the things that have to be done rather than all the things that you used to be able to do.

Is it possible for you to buy in services eg someone to clean the house? Could you return to the UK temporarily?

Treat it as a job - this is what you do now. And in any job you need to be organised, work efficiently, get on with the bits you don't enjoy - and also take regular breaks and do something non-work-related from time to time.

How is your husband coping? If he is struggling emotionally this is an added issue - dealing with all you need to do and then having to cope with someone who is depressed/angry just makes things harder. As he gets better, you will be able to let him do some of the things that need doing. When my OH was off work, we found that 'one big job a day' worked well - every day when I went to work, he would try to do one job. On bad days that was just getting up and having a shower, but as he got better it might be doing the ironing (sitting down) or cooking tea.

Hopefully things will improve as time goes on.

BritAbroad

Thanks everyone for all your advice. Today was actually a good day and fairly low stress and I got a reasonable night's sleep which helped.

We live in the US, in a rural area, though close to a city. You can't even go and buy a pint of milk without a car - our nearest shop is 5 miles away. We tried internet supermarket shopping and it was a disaster! The concept os just not nearly as developed as it is in the UK. There's no town centre as such, unfortunately the US is very car-centric and there's nowhere you can really go where you can just park up and then pootle about. Returning to the UK is not an option as OH can't fly. We did think about getting some help, like a cleaner, but it's very expensive compared to the UK and as we're facing big medical bills it can't be justified.

Everything seems to have slowed down, in a weird way. Where getting up, showered, dressed and out the door might take 45 minutes before, now it takes 2 hours. He can't get up and down the stairs on his own, so it's usually at least two trips for me - one to get his essentials to the right floor then one to get him. Getting him organised and into the car can take half an hour, and then I'm running around trying to remember everything we need, locking up, getting the walker and crutches etc, before having to drive to wherever we need to go, then repeat the process for coming back. He can't stand for any length of time so I'm doing the housework, making meals, trying to keep on top of the washing etc (which has in itself increased drastically). When I say housework, I use the term loosely - it's bare minimum to survive and for him to get around safely as needed. The house looks like a war zone but I don't have sufficient time or energy to do much with it. Definitely no ironing!

To an extent I suppose we have tried to live like we did before but it's very quickly become obvious that wasn't going to work. I'm trying to adjust to the way life is just now but it's really hard. OH is actually much more positive than I am.

A couple of friends have offered to meet up for coffee, but unfortunately I've been unavailable at the times they are. It's noticeable that other 'friends' have disappeared. It's annoying, especially since I've done plenty of favours in the past. I was aware that these folk were fair-weather friends though, and I had hoped to find some more friends this year, but that will just have to wait.

I will look to see what help is available and try and get a short walk round the block tomorrow. Thanks for all the suggestions.

valk_scot

I don't suppose you're church members? From what I've read about social care in the US a lot of it has devolved onto the local churches which often run a strong but informal care network for their members. I'm not suggesting that you sign up to some extreme religious sect just to get help with the shopping but if you do have one of the more mainstream churches locally then it might be worth asking for a bit of assistance, churches can have a strong community ethos too.


If you're still in contact with some of your friends, ask. I know it's incredibly difficult to ask for help but often folk don't like to offer in case you feel they're implying you can't cope. Ask for specific things...spend an afternoon socialising with your OH so that you can blitz a couple of rooms or do the shopping for the month, mow the lawn for you, do an essential bit of DIY.


The suggestion about moving the sleeping area downstairs so that he doesn't need to cope with them is a good one. If the bathroom is upstairs that's awkward but you can sort it out so that he only has to go upstairs for one shower a day and essential loo trips, get him a camping loo bucket for liquids only! Give him all the sitting down chores as well including food prep and if possible, get him to do the cooking as well. MY SIL had an office chair on castors in the kitchen when she broke her leg, she was looking after a three year old on her own part of the time and she used to chase him round the house on this bloomin' office chair!


And be positive, this won't last. You're fortunate there.