Feeling guilty

All about caring
1

Hi all

New to the forum but have been browsing for a bit before joining. A brief overview view of my story…hopefully I won’t waffle.

My wife has had lupus for 25 years and until the last 3 years it was managed ok. However she is now on immune suppression treatment to try to control it. On top of that 2 1/2 years ago fractures developed in her femurs due to long term alendronic acid use. Which resulted in 1 leg spontaneously breaking just over 2 years ago as she was on stairs and other broke as she fell. Emergency surgery was performed but 1 leg has not healed and therefore more surgery may be required, this has limited her mobility drastically.
On top of that 3 months after surgery she developed heart failure which is fortunately controlled now.
During the pandemic we have been increasingly worried about her catching covid due to her vulnerable status and we have done everything we can to stay safe. Which with 2 teenage kids is tricky.
Inevitably she got covid 4 days ago. And we contacted the hospital for anti viral treatment and left a message.They got back to us today but unfortunately I missed the call(I’d left my phone whilst doing something else) now they won’t give her the anti virals and it is my fault, and I’m now feeling guilty that I could be responsible for her being hospitalised or worse. I really have tried to do my best but can never keep on top of it all and increasingly forgetting things. I don’t know how to make it better.

Sorry for the long post I suppose I just needed to get it of my chest, I have no support network so thought this may be a start.

Paul

2

Hi & welcome Paul

No 1 you can’t be superman you have been doing you very best. I think that you have managed to get you wife through the pandemic so far is admirable.

The situation you find yourself in has an effect on everyone in the family. You all need a level of support even the children. Who are themselves young carers.

Many local support groups provide help to young carers. Also your Local Authority can help by your wife having a needs assessment and you a carers assessment.

https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/needs-assessment
https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/carers-assessment

What help do you currently have in the home?

3

Paul, please don’t be so hard on yourself!
When did you last have a 2 week holiday to recharge your batteries?
You have been a really loyal and hard working carer who deserves praise, not criticism.

4

One thing I learnt very quickly when working with carers was that they have an enormous capacity for feeling guilty, often because they feel they’re not doing enough.

And frankly, most - if not all - of them were pretty much on their knees from doing more than they could maintain.

Welcome to the club!

Anyway, the good thing is that you now have a support network. Please keep in touch!

5

Hi Paul,
it’s very easy to miss a phone call and doesn’t sound like the hospital tried very hard to get in touch.

I echo what the others say. Keep in touch whenever you need reminding.

Melly1

6

Thanks for the messages, we don’t currently have any help other than pip payments I will look into what’s available. The children gave been amazing taking on a lot of responsibility, another thing to feel guilty about!!!
Holidays seem a million miles away. Trying to go out and meet friends for an hour or 2 is a logistics nightmare.

It’s good to know I’m not alone but it’s so difficult and can’t help but feel overwhelmed.

7

Hi Paui

Sounds like you have some pretty amazing kids.

I was 2 when my sister was born with heart issues and learning disabilities. I actually believe she had autism, but that’s a topic for another time.

Anyway, I got involved in her care fairly early on. One way or another I’ve been caring ever since. Thing is, I knew my parents couldn’t give me the time they gave to my sister. Yes, it did feel a bit shit, to be honest, but I understood why and accepted it. Most kids do. I won’t go into whether it’s right or not. When families are stuck, there’s not a lot of help out there so you do what you can.

Then I found myself in the position of my parents when Mike, our youngest, was born. Our eldest, Dave, went through what I did all those years before. Life can be a proper bugger. I damn near bust a gut to give him more time. Turns out he felt that I was keeping him away from his Mum.

Can’t win.

Do I feel guilty? Yes. Burt I don’t let it get to me because I know that I tried to do the right thing. So did my parents. All good parents do, even when they’re facing a rubbish situation.

On a different note: have you tried inviting friends round? Would that work better for you?

8

Hi Charles, It never occurred to invite people round. I sometimes feel I cant think straight and even simple solutions escape me. It’s been such a huge transition over past 3 years, often feel mind is scrambled.

9

Hi Paul.

Just remember: it’s easy for people on the outside to drop in suggestions. We don’t know your circumstances and they don’t affect us in the same way. And we’re not so close to the problem that we can’t see around the corner. Stepping back is a hard skill to learn for yourself but it’s dead easy to do for other people.

You were thinking about wanting to go out and how difficult that is, what with making sure you’ve got everything you might need if something goes wrong. All that planning makes a break seem like a chore. So flipping the problem on its head is easy for me - I’m not the one thinking about being trapped in the same 4 walls. So a compromise solution might work - bring some freedom inside.

Doing that might give you an opportunity to make arrangements to leave some kit with your friends so that you can visit without having to take everything with you. A bit more spontaneity is no bad thing.

Basically, I’m just sneaky and twisted. :wink: :wink:

10

Your reaction to my holiday question was just as I expected!

Caring can kill if you don’t look after yourself as well as others.

I developed a life threatening illness 18 years ago, the consultant told me the “20 years without a holiday didn’t do you any favours”.
At the time we had a brain damaged son, my dad and husband’s mum and dad had just died, my mum was very ill and housebound for about 25 years).
As I was recuperating from surgery, my lovely husband died of a massive heart attack, soon after his father.
I will always believe the stress of caring was a major contributary factor.

Three months after my husband died I was disabled in a car accident, both knees ruined, told to put off replacements as long as possible due to my age, so I hobbled around with one, sometimes two sticks, for years. I could drive, not the long distances I loved, but could just about manage 40 miles.

I stayed in a B&B for my first ever trip, but found it a nuisance having to get up at a set time for breakfast.
I live in the New Forest, and found the noise of others in the house rather difficult, so ever since, I’ve gone self catering.
The change of location was great, just being able to park up and look at somewhere different was lovely.
There are quite a lot of self catering places that are disabled friendly, so you could both go together.
Would this help you?

Alternatively, somehow, you need to think about getting more time to yourself, to keep YOU fit and well.
After all, if you became ill your wife would need huge amounts of care, possibly residential.
Surely it’s better to avoid long term care at all costs.
If you love her enough to look after her high care needs, does she love you enough to let you have a week or two off?

11

Dear Paul_2201123
Hi i am Kristie i volunteer as an online community host for Carers UK. I am sorry to hear of the difficult situation you find yourself in and i hope that fellow carers on the network can help you and give you advice. As you have said you have no support network this is a start for you.
So welcome to the forum! You are not alone in your caring role and i am sure that many on here will understand exactly how you feel and offer you the support that you need. Caring can be very lonely and the pandemic has made caring responsibilities challenging as many carers have been socially restricted and unable to attend social groups etc.
Carers UK are running two online weekly meet-ups for carers and you can find the information on how to register at Care For A Cuppa:-Online meetups | Carers UK. The second online weekly meet-up for carers is Share and Learn:-Share and Learn | Carers UK.
Our telephone number for Carers UK is 0808 808 7777 and is open from Monday to Friday between the hours of 9am-6pm. Our email address is (advice@carersuk.org).
They provide information and guidance to unpaid carers. This covers:-
-Benefits And Financial Support
-Your Rights As A Carer In The Workplace
-Carers Assessments And How To Get Support In Your Caring Role
-Services Available To Carers And The People You Care For
-How To Complain Effectively And Challenge Decisions
Best Wishes
Kristie.