Whilst looking after our loved ones our own... - Care Community

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Whilst looking after our loved ones our own health is in jeopardy

secrets22 profile image
21 Replies

I have just cancelled an appointment with a surgeon who is/was going to operate on my arm,i have damaged my elbow extensively due to me going like a bull at a gate doing jobs around our property,and it means I have very little use in my left hand,and due to David's health becoming more precarious,i really had no option but to cancel.

However they were very understanding and have given me another appointment for end of May.

The bottom line is that as a carer it is very much hard work,and it tears one about physically and mentally,and I personally have never felt so unwell,but we carry on because its what we do,and help is never available to anyone self funding.

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secrets22 profile image
secrets22
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21 Replies
Hellebelle profile image
Hellebelle

This is so true. The emotional and physical toll on carers is immense. When you are self funding you end up bearing the cost of everything, it is so unfair. My heart goes out to you and I hope you get some respite from all the jobs, even if just for a while? My mum who is my dad's main carer gets out to her over 60s club and a choir. However, we rely on having sitters for my dad as we are all at work during the week. The weekend aren't so bad when we can help out. It isn't easy is it being a carer, but as you say, people don't have a choice. Sending lots of love. Helen x

I know what you mean, my husband is now on 'end of life care' having had cancer for 5 years. My health has certainly suffered during this time and I know many other carers who have had to have operations on backs and shoulders. It is very difficult.

MylovedhasPd profile image
MylovedhasPd in reply to

YES, I discovered clunking in left shoulder; happily a friend I visited last week was very positive about recovery.... Hope so!

sassy59 profile image
sassy59

Yes things can be very difficult and even when Pete was in hospital I was still his carer. It seems so wrong that you had to cancel your operation. What will you do at the end of May? Respite care should be available plus a good plan in place whilst you recover. It’s a damning indictment on the government that this won’t be happening.

I do hope something can be done for you and soon. Self funding or not, you need help now! Xxxx

Hi secrets22, Yes, this is one of the very unfortunate side effects of having a carer's role. No-one has ever stopped to think how we get our own medical needs attended to. If a child was at risk when a parent had to go into hospital, steps would be put in place immediately to make sure it was well cared for, yet adults can be equally vulnerable but no help available until there is a crisis and you are whisked away for emergency treatment and social and medical services are left to pick up the pieces because they have to.

And caring does take a toll on everyone, physically and mentally. I've heard carers in nursing homes bemoaning their lot, and yet they get to go home at the end of a shift with at least a little time before the next one to recuperate. No such luck the poor home carer.

I don't think this will ever change. Those whose responsibility it is supposed to be to make life better for us don't do so with any compassion. These days it's career politicians often with great personal wealth, who never need worry about where the next nurse is coming from in their own lives. And we are far to busy to organise ourselves into groups to protest as eco-warriors are able to do. What happens to our charges if we superglue ourselves to a bridge in London?

I do hope you can find a way, (and some help), so that you are able to get the hospital treatment you need. Grinding down help until it is useless doesn't seem to be the sensible way, does it?

Very best wishes.

Hellebelle profile image
Hellebelle in reply to

So very true unfortunately.❤xx

starveycat profile image
starveycat

Who cares for the carers

MylovedhasPd profile image
MylovedhasPd in reply to starveycat

Self-care....with support. My husband passed away three months tomorrow. Only after he was gone did I notice a shoulder 'click', being completely closed down on my left (emotional) side. What didn't work was believing I wasn't worth 'self-help'ing. What did work was when I took the Magnesium Chloride bath, ate bananas and lemon water daily, used lavender and other essential oils, did EFT, Reiki, and went to a friends house for a bowl of her homemade soup (we still meet :) ). All this in an atmosphere of love for my Beloved and him for me. The struggle was to keep things natural, lower side effects, have him at home and pass peacefully. We achieved all this before any nursing care package could be put in place and my daughters could be at his side from abroad for the last few days. It has taken me this time to look refreshed - good sleep and a good library. Bless you for having to take care of you; it is a big important life lesson for us to learn.

I totally sympathise with you . My dad had to cancel two eye hospital

I totally sympathise with you. My dad had to cancel TWO eye hospital appointments when we were caring for my Mum, and also Dad suffers from deep vein thrombosis he has a vein missing because it wasn't working properly so he has to put his feet up a lot when he sits down but he never had a minute to himself to sit down or make himself regular drinks. In the end he had a leg ulcer on the inside of his ankle which took about six weeks to treat it with antibiotics and dressings Dad is okay now but it needn't have been neglected and nipped in the bud when he first noticed it . Still he wouldn't take any notice or advice I gave him. He said that Mum always came first in our house because as most of this community know that my poor Mum was very poorly and we just wish she was still with us . We still haven't got our heads round it yet. It only feels like yesterday. I hope this helps you secrets22

Bella395 profile image
Bella395

Secrets22 - there is no doubt that carers can and do suffer ill health as a result of their responsibilities. In your case I sense that you have some deep conflict because you seem compelled to carry on no matter what, partly due to your Christian faith. You must know that if you become too ill to care for your husband the result will be the same as you fear ie he will have to go into a care facility. In that case there will be two casualties, not one. You cannot do this alone. I have been caring for a long time now and have had to learn this lesson, despite wanting to be independent.

I don't know what your personal circumstances are but I have difficulty in understanding why you cannot attend to your own health care needs with the support of social services. I feel sad for you secrets22 and hope that you will be able to get the help and support you need. Caring is hard and we need to have the insight to know when enough is enough.

I just want to say that in this thread there are some political comments with which I broadly agree. However, my experience of the health and social services in my own area has been largely positive. It's not perfect but I know that there is support out there and I am grateful for it. For me, it has been a case of navigating, and recognizing those services which will be of most use to us.

Bella395 profile image
Bella395

Secrets22 - I read your post again and with regards to self funding, I wondered if you have had a continuing care assessment? Apologies if this has already been mentioned.

With regards to paying for care, they can’t take your home into account in certain circumstances. Presumably you have savings in excess of the threshold. Is there a problem with paying for care? Would it cause hardship? Do you get disability living allowance for care and mobility? Do you get carers allowance? Just wondering if you have accessed everything you are entitled to.

Although we have a property, we are below the threshold for savings. However, we use the allowances to pay for help as we take the view that now is the ‘rainy day’. As my manager used to say, there are no pockets in shrouds so you might as well spend it to make life more comfortable. However, we are all different when it comes to financial matters.

With regards to the surgery, could you ask the hospital staff to refer you to their social services team? They might be able to help.

Jacki66 profile image
Jacki66

You are so right! If you have worked and saved in your life you are treated as somebody lower than those who can and do not work in their lives. If you provide for yourself and build up your own life as I was taught to do as a child, then you are treated as somebody lower - again - than those who sit on their backsides and expect handouts.

Today was a hilarious day for me and very much points to your topic of self funding and caring for one's financial future.

I accompanied my husband to a hospital appointment (as his carer) in hospital transport. The point to note here is that it was for a urology appointment and he had to have a scan with a full bladder so time was of the essence. We got to another person's place to be picked up - a council house I might add - and, surprise, surprise - we sat waiting for ages before the driver of the NHS hospital transport was told the person inside was "still in their pyjamas". This, knowingly, after they had booked the same transport and had an appointment at the same hospital. That means this ignoramus had now cost NHS hospital transport however much, a wasted consultant's appointment and the rest. When are these idiots going to get charged for this?? Who do they think they are??

Luckily I was given the choice by the driver to wait or go and you can obviously imagine which option I took! Unbelievable!!

Fed up!

Lynd profile image
Lynd in reply to Jacki66

Hello jacki

Hospital transport

Failed to pick us up to take us home

Second time failed to pick us up to take us

While in no way do I condone people not being ready to be picked up hospital transport can be pretty useless in my experience.

Sorry you had to sit outside a council house. A council house????? How distressing for you.

I was bought up in a council house by loving hard working parents and I know many people who live in social housing. All decent people.

Your ability to own a property does not define you as a superior person.

Jacki66 profile image
Jacki66 in reply to Lynd

This is about self-funding if you read the initial blog. That means paying for things yourself. I'm not particularly interested in where you were lived. What I am interested in is how people pay for things themselves and if the shoe fits, then wear it!

Lynd profile image
Lynd in reply to Jacki66

I think it was clear from your previous post what you were interested in.

Not sure what the shoe comment is about.

Jacki66 profile image
Jacki66 in reply to Lynd

Oh go away!

Bella395 profile image
Bella395 in reply to Jacki66

Perhaps there was a good reason that the man wasn’t ready, and one which was unrelated to his occupancy of a council house. We are fortunate to have hospital transport and perhaps need to take the rough with the smooth so to speak.

Lynd profile image
Lynd

All this is wrong. Everybody should be treated the same regardless of savings etc. God knows we have all paid enough tax over the years.

Bella395 profile image
Bella395 in reply to Lynd

Secrets22 is struggling with her caring role right now. Some of this is due to being self funded but not all because she has said that she would not accept respite care anyway. Perhaps the political situation regarding care and the ageing population is more suitable for another, separate topic.

Bella395 profile image
Bella395

Secrets22 - have you been able to make plans so that you can have the surgery on the second date offered? I do hope so.

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