Exhausted in caring

[Lindshh]

I’ve been caring for my husband for the past two years since his brain injury and working full time. I have had help but it’s all self funded so it has been a struggle. But due to lockdown and shielding (he has other health issues) over the past 10 weeks I have worked full time and cared for my husband full time also on my own. It has been very difficult, but he has become more and more demanding at times. He has very limited mobility (he can walk a few strips with help but mainly uses a wheelchair but has significant cognitive issue, so needs assistance even with the wheelchair) so has very little independence and is become more demanding and less understanding of my work commitments (I have been working from home - he can’t be left alone for more than an hour or two). His emotional needs in reassurance are exhausting and I suppose I’d just like some time for myself to be me again. We have no family close by so it is all left to me even in ‘normal’ times. I’m trying to keep on top of things around the house but he’s very resentful of me making any changes. I do understand his frustration but two years on, I myself need to make sure that we keep on top of things around the house so it doesn’t start to fall apart. Before his brain injury he would have beeen doing all of that. Tonight I am at the end of my tether.... I want a normal life, I’m only 52, I still love him desperately, but we’re not husband and wife really anymore, I have become his carer. I really don’t want to become bitter about our life, but I am getting angry about being stuck in a rut and not a he to move treats. He has not accepted his limitations really - he is having counselling and is on medication but it doesn’t seem to be working. I am living in high anxiety waiting for the next catastrophe - he has had several falls ending up in A&E. I worry about leaving him on his own - when I have done, he has had a fall. We have a carer starting back next week fir 6 hours but I know he’ll be awful to her to start with as he’ll just want me. I suppose I’m not looking for answers, this was just a really helpful forum for me to be able to vent a little. I’m dreading the end of lockdown in a way, as trying to manage time out to see my friends is really difficult and at the moment it is a pressure I don’t have. So sad, as my friends have been a lifeline during the dark days in the early months, I don’t want to keep moaning to them about how difficult life is.... thanks for being out there as a ear to listen x

[sospan]

Hi,

That must have been very difficult to write and possibly some relief to vent.

Exactly the same thing at the same age happened to my wife and I. I had just turned 50 and she had her 49th a few months earlier.

I too used to be fiercely independent, the bread winner and on weekends used to build and repair houses. When I had my injury the whole world came crashing down - lifestyle, finance and to some extent even who I was. It used to freak my wife out as she felt that she had a stranger living with her 24 / 7

It is often the carer and family that is left out of the picture as all the focus is on the patient. Like yourself my wife felt all her hopes and dreams had faded away in an instance.

However, there is hope. Deep down there is probably the drive and motivation to improve. It just needs time to come to the surface and slowly and surely things start to improve. One of the things I started to do was to cook again my first attempt took an excruciating 3 and a bit hours to make a cottage pie. Over the months, I continued with the cooking and started to improve.

You do need some relief and respite, so in the morning why not give the Headway support line a call. They are ever so helpful and understanding on the needs of Carers and can hopefully find some ways to help

All the best and hang in there

[Lindshh in reply to sospan]

Thanks, unfortunately my husband has lost his motivation to do things for himself, he has right side paralysis so cooking etc is really difficult and if he finds it too difficult he won’t do it........today is another day and we will see what it brings..... thanks for responding, really appreciate that there lots of people do much more worse off, but caring is a lonely place to be sometimes x

[sospan in reply to Lindshh]

Its ok many carers and get to the breaking point where they think they can't cope any more. Again it is ever so normal to fell this way and life has pear shaped

The lack of motivation is quite normal and indeed whilst it may seem bad, it could be that it is body starting the "repair" function and taking as much of the brain cycles as it can, leaving not much free for anything else.

The problem for both sides is that there doesn't seem to be an end in sight. If you break a bone you know what the treatment will be like and how long for it to recover. The really unfortunate thing with this, is that the end point is unknown and two years is still early.

Hopefully, once the lockdown eases you can find a day centre or care provision where you both can get a break.

take care

[TaIaV]

You are handling so much and it sounds like you are doing as well as could possibly be expected. I may well be in your situation in a few years.

I am glad that you were willing and able to write this down. I hope the benefit of that is long-lasting.

One of the things that your description reveals is a keen awareness and sensitivity to others ( your husband, the caregiver, your friends), and a sense of commitment to trying to minimize their discomfort. That expectation of oneself can be very wearing. It is simply part of the sad actual situation that some of the discomfort should fall on them instead of mainly on you. I recognize this desire to make it all as good as possible for others. It is often not even fully appreciated by others. When that becomes apparent it can be hurtful. I don't know if this sounds relevant, but the main suggestion I have is to consider lowering your standard a bit when it comes to taking care of everyone.

Making time to be with your friends is clearly hard but please make it a priority when you can. All the studies show that it is our relationships with women that have among the biggest impacts on our sense of well-being.

Wishing you space,

Taia

[Lindshh in reply to TaIaV]

Thank you - an early start while he’s still safe in bed and a walk with the dog trying to sort my mind out. There will come a point where I may not be able to cope anymore, I don’t think I’ve got to that point yet but thanks for being there when I reached out x

[New_beginning]

Reading your post i just visioned what im going to experience soon with young children as i have to return back to work soon. Husband sustained TBI march 2020. Have you had Carers Assessment for your needs.

Your doing great, im only coming up to my 9th week with husband home.

Hang in there, all the best.

[magdolna]

As you may know many marriage post BI do not survive. Read James Cracknell & wife, Beverley Turner's experience in their book. I think you need to think of yourself a bit more, especially during these lockdown times. And especially if you have a full time job still. Have a more satisfying relationship with your husband. You can still love him but live separately. Could be best for both of you in long run? All the best to you and your husband. It really is not easy for both parties in these situations.

[charlie5540]

Have u joined a group? To go to? Are u claiming carers allowance? You are not alone. Doing the job on your own without making arrangements to take a break or more importantly go to a group that's at a preset time is always stressful especially after u gave up your job it's not just the nhs who are heroes you are a hero too

[Lindshh in reply to charlie5540]

No, I haven’t been able to join a group, they are usually when I’m at work - we have to self fund support when I’m working in the office, at the moment I’m working from home...but even do can’t afford for any additional support for ‘me’ time, whatever that may be. Selfishly I refuse to be defined by this, I don’t want to be labelled as my husband’s carer, I’m his wife first and foremost..... perhaps difficult for some to understand.... I am feeling a little more calm about things today..... but who know what tomorrow will bring - I am really grateful for your kind words and support, it means a lot to reach out and for someone not just to be there but also to understand x

[New_beginning in reply to Lindshh]

I was recommended a book called The Selfish Pigs Guide to Caring by Paul Marriott. Ive just ordered.