The stress that comes from lying

[bowlingbun]

Jenny and I have a lot in common, especially the fact that we are both now widows. In theory, it should be possible to say "No I don't want to be a carer" but it just doesn't work in practice. There might be some support if you say yes, but try saying "No" and it's a different story. I've even written to SSD and the GP saying this about mum, no one took a blind bit of notice, even days after a huge operation which involved opening up my entire abdomen! Who can you turn to if you don't want to be a carer? No one wants to know. I've just had a huge battle with the hospitals mum was in. The first said she was fit to be discharged without even seeing her walk - she couldn't. They didn't want to even talk to me or my eldest son on the phone (so I had to come home early from holiday with my son with SLD) to make sure they made proper arrangements. The second, rehab hospital was they were determined to discharge her home, ignoring all the rules, refusing to give me a Carers Assessment. The only way I could stop this was to just not turn up when the hospital bed was being delivered! The hospital even said that they could discharge mum without me as they knew she had a front door key in her purse, so I made sure the inside door was firmly locked, just in case. Finally they agreed that she was unfit for discharge after a series of "medical adventures" occurred whilst an inpatient. The relief I have now mum is in permanent residential care is huge. Last night I slept soundly right through the night, for the first time in a year. There should be more support for any carer saying "Enough is enough". If there was, perhaps my husband, prematurely dead from a heart attack, would be alive today?

[Duncaring]

Hi
I was my dad's carer for nearly 20 years until his death. I thought I was the carer and that I did all the things needed done. Sure I was the one who did the shopping and the hoovering, I fought weeds and foxes in the garden too. I lived in a city and gave up my life on an island speaking the language of my forefathers. I hated living in the city but I knew I could not shift my dad to the island. I tried my best for my late parents even though as a typist I do not see any wisdon in a typist caring for heart patients!

The day came when both parents were gone. After all the stresses over a great many years I got ill. I dont think my daughters fancy life as a carer and I dont blame them given the lack of minimum wage or european working hours directive.

Even though my dad could barely walk in his last year, the fact that he was there I felt that he cared about me. I suppose he would have done his best for me had he maintained his health and my health deteriorated even thought he was not a man who ever had to do all his own housework/cooking. He absolutely hated supermarkets. I believe he would have tried his best as would my late mum. Caring to me is a state of mind. I would never have chosen nursing or working in a care home I could not do those jobs but for my loved ones I tried my best. I think the co-relation between loved ones and caring is the vital point in this thread. No matter how nice our inlaws may be (or not in many cases) they are not our own people and that does make a difference.

In Jenny's case I really do wonder what the other son thinks he is playing at. He should do something to help his mother because she is his own.

Duncaring

[Dancedintherain]

.
So WHEN have I ever said that Jenny has no right to post here? If you check you will find the answer is never. I hope that's sorted!

I too defend, the right of others expressing an opinion
This also includes the right of anyone else (in this case not me) to admit they are offended and hurt ....... and rather than question the validity of their feelings, should we not be showing compassion? I suggest more than one contributor has been stressed one way or another because that is the risk we take if we join in and get involved. I also note that anyone getting involved believes they are contributing for the right reasons. certainly in my case, I contributed to help jenny in the way I considered best.

Sometimes, it's best to take a rest to each step back, calm down and perhaps review this thread when we are more open and receptive, less emotionally stressed. We step into a giant hall full of strangers, chuck our hearts out and don't always like the responses.
Why is this such a surprise?

And by the way, This caring lark ain't a competition. It's about the welfare of our carees.

Jenny has been given plenty of answers, practical and emotional on both of her recent threads.
And I am all done in!! If my best isn't good enough I am sensibly and practically turning away.

[Dancedintherain]

Duncaring, good point about the son. On jenny other thread (duty of care?) I too have suggested it might be useful to involve the son in decision making, at least.

[Greta]

Sorry, Dancedintherain, I most certainly didn't mean you, but even if I had, it's just my opinion again, isn't it? As you say, it isn't a competition.

[SheWolf]

DancedintheRain:

And by the way, This caring lark ain't a competition. It's about the welfare of our carees.

Very true. As for this website, I think it's more for the welfare of carers; somewhere to find information, exchange ideas and help each other out with suggestions and advice.

DancedintheRain]Jenny has been given plenty of answers, practical and emotional on both of her recent threads.
And I am all done in!! If my best isn't good enough I am sensibly and practically turning away.[/quote]

I'm unsure why you're feeling that way, because I read your advice and it seemed pretty sensible to me. It's up to Jenny whether she accepts your advice, but I'm sure she'll be along to respond to your ideas at some point (probably some point quite soon... we all know she can't stay away for long! ).

I hope nobody's so upset they want to leave. The melting pot of ideas can get heated at times, but I find it really useful reading other people's suggestions, even though I might not agree with them. I'm sorry if I've offended or upset anyone and please feel free to send me a PM if you've got an issue with something I've said.

[minimum14]

Hi. Some of you may remember from my posts that I have an adult son with autism who is in supported living with a v g care provider. This took 4 yrs to achieve after his 1st supported living home proved to be totally the wrong place for him. It was a truely awful time. I think, generally speaking, that "once a carer, always a carer" generally applies. I noticed in one of Jenny's posts that she said she'd still have to visit. But in reality, it's more than that because we need to know the person we love/care for is, at a minimum, content and hopefully more, wherever they are. We hope to strike a balance between our responsibilities as a carer and our need to live our own lives - at least that's the way I feel. It can be a serious dilemma for carers for all sorts of reasons. Deciding to be a carer, whether full time or part time is a life changing decision. Sometimes we don't even decide, it happens + that's it. It changes our lives, maybe for ever. At the same time the person we care for/love, is in a vulnerable position and needs us. We wouldn't rest easily knowing we could do something to alleviate their unhappiness. But we do have to think about ourselves as well. Caring takes its toll, emotionally and physically. I think it would improve things dramatically for a lot of carers and those they care for if good quality services, which were properly co-ordinated were in place. As things stand that isn't usually the case. So whilst we do have the choice of whether we become carers or not, we are acutely aware that many places are not up to scratch. Then the person we can for may also be aware of this and not wish to leave. If someone isn't aware that services can be substandard then we take on totally the decision making for their welfare if we decide they should go into a care home of similar. Being a carer is an absolute ethical and emotional minefield. I don't have any concrete answers for Jenny. I do feel for her predicament and also for the predicament of her caree. In the end a crisis of some sort can bring things to a head. However planning in advance is the better way. A crisis is destabilising for all concerned. Jenny needs to make a decision. I can understand why she finds it difficult but I don't think she'll be able to maintain the position she's in now indefinitely.

[Scally]

Yes, advance planning is crucial. We need to look around at all the people we care about and think: 'What if?'. And even at ourselves: "What if"?

Then plan ahead for all eventualities. Not obsessively, but with the same degree of attention we might pay to, say, buying a house or getting married. Big decisions, and at core are two documents: your power of attorney and your will.

Not having both of these in place is like going salmon fishing in Iran without a visa or fishing rod. Stupid, and futile.

[Sajehar]

My dad is in the middle of sorting out POA for me if he dies or if he goes the same way as mum. Not easy, either practically speaking or emotionally. Every time I sign something, I feel as though I'm signing their death certificates. Stupid, I know, but that's how I feel.
I decided to become a full time carer out of sheer practicality as I didn't trust the care companies to do a good enough job.
A relative was a paid carer and told me horror stories about how these companies are going. They are there to make money, and treat both the carer and caree as if they were robots with no room for manouver. I daresay there are good ones out there, but I decided I wasn't going to take the chance of releasing my mum into their tender mercies of flying half hour visits.
I was right. It would often take me hours to persuade mum to eat. She's back to normal weight now, but I still have to keep an eye on her appetite. Noways could that be done with flying visits.
I think the nub of the problem is that we no longer have 'communities' to look out for one another, and no amount of initiatives can re-create them artificially. Communities fly in the face of modern day living.
Companies providing those services, whilst making a profit, are a contradiction in themselves, because if the level of care needed was in place, no profit could be consistently made. So, in order to make a profit, the level of care goes down. Hence those 'flying visits' of 15 minutes, or half hour if lucky, to wake up, wash, get medication down their neck, get breakfast ready, and then 'fly off' to the next 'customer'.
My relative couldn't cope with the stress of being expected to treat her clients like cattle, being 'fined' if she overstepped the mark by spending 40 minutes with them, and
In the real world, that's just not possible. She resigned.
It's like we're being herded into some pen - look out for each other - but, by the way, it's going to take two earning a full time wage to do this... Says who?

[SheWolf]

Sajehar:

My dad is in the middle of sorting out POA for me if he dies or if he goes the same way as mum. Not easy, either practically speaking or emotionally. Every time I sign something, I feel as though I'm signing their death certificates. Stupid, I know, but that's how I feel.

Sajehar, it's not stupid at all, I felt exactly the same when we went through that process. It's a bit like looking at somebody's will before they're dead... it feels so unseemly. Many times I felt tearful as it just dragged up all my fears about the future. I'm glad we did it now though, as Dad would NEVER have agreed to spend all his savings on the care home, but I had to do just that, as he needed a level of care that couldn't practically be provided at home. The care home is not perfect but he is better off there than he was at home and at least I am able to access his savings easily to pay the fees.

Back on the subject of lying, his initial reaction to the cost of the care home (he demanded to know) was so extreme I never told him the truth again. Nowadays I play it all down, telling him that he pays something towards food and beer, but the state fund most of it so he doesn't need to worry. Quite a big lie, as the only part the state are providing at the moment is the attendance allowance, which is only a fraction of the price. I'm worried what will happen when I apply for funding and social services start asking him questions... he'll go ballistic if he ever discovers the truth, that I had to raid his savings, use all his pension and leave Mum raiding her savings just to pay the household bills. I can never let him know the crippling costs and the awful extent of the financial burden, or he'd just demand to leave the care home.