h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

It's sad that things like this cause such arguments among siblings. It seems there's no way you're going to get them all round a table, either.

I wish they could read your journals.....

Swears loudly on your behalf. The fact that your siblings feel guilty they're not doing as much as you are does not excuse their petty behaviour.
Did your mum make a lasting power of attorney then? I'm seriously thinking about it to go with my new will.
Your mum obviously can't put her own shopping away, so of course you have to and nobody does free deliveries. I've never been able to afford it, even when wealthy (!), well working.
"In the middle"? I naively thought you were all on the same side.

On a happier note, wasn't the sky wonderful earlier this week? Feeling of being able to touch the stars like we used to get in the African desert. Thinking of you.

I have to correct myself. The co-op does do free delivery. Might be worth looking at their website. They don't seem to have a minimum spend but I may have misunderstood that. Good luck.

oh GB that sounds hurtful and insensitive

sorry just leaping out dom like this with a

Just thought you might like to read this:

http://www.dailymail.co.uk/femail/article-2540985/Why-men-expect-sisters-caring-elderly-parents-Claudia-two-brothers-But-mum-fell-ill-soon-clear-whod-carry-burden.html


It's happened in family close to me. For years now I have been grateful for being an only child as I didn't have that grievance.

Websailor

Thanks everyone, your thoughts mean a lot

I'm bracing myself for the lunch with my brother and his wife. But I'm going to be honest and say what I think, rather than continue being a mouse/martyr. What really rankles is that my sister put in a claim to R for £40 to cover Mum's contribution to Christmas (she had her for two days+nights, and I brought her home) and he paid that unquestioningly. I think I should have been adding £10 a week petrol money to my invoice every Wednesday last year since Mum was unable to give it to me in cash herself, then we wouldn't be in this pickle now, so I'm more annoyed at myself.

No Mum didn't give power of attorney, my brother's closed all her accounts and opened a joint one at his branch, (he's manager of a Building Society).

As for that article, I couldn't work out why the daughter is at the hospital bed every day for 12 hours. She could ask for social services to help with her father. I have a cousin who is my age, and only sibling who's had no children of her own, her husband is now over 70, and she runs a shop! Her parents, my Mum's brother and his wife, both have health issues - in fact my uncle is his wife's carer as she's blind and wheelchair-bound. How my cousin copes with all that I have no idea

It's not always the daughters, either. My ex G looked after his mother for 8 years in his own home, while his sister who lives in London visited a couple of times a year by train, stayed a day then left. She flatly refused to look after her mother while G had a holiday so he had to engage the services of a house-sitter. So I can see both sides of that argument. Some of Mum's carers I've spoken to tell me some of their calls don't see family week in, week out, even though they live nearby. One neighbour of Mum's who has obviously seen me coming and going daily mentioned that if her mother needed full-time care then it would have to be down to social services as no way was she going to give up her part-time job to do any caring, she'd raised 3 children, that was enough. I half think some people think I'm a mug, when all I want is a bit of respect? If I were a working sibling and there was another upon whom the bulk of the caring falls, I'd bend over backwards to help that person.

Many years ago, my Grandmother; who had eight children (including my Father), was looked after and given a home by one of her children. Needless to say, the one Daughter who visited least (called about twice a year with a "hello darling, how are you") was the favoured one! The Daughter who did the most, got the least gratitude. Hang in there GB!

I agree with Scorp, that is often the case. As for care in the community i think it very much depends on where you live and which companies are providing care. Can you understand a company sending a new recruit, aged 17, to care for a very elderly lady with advanced dementia, when the 'carer' can't fry an egg, and isn't allowed to cut up a cake (heath and safety!!)?

GB, you are doing what your heart and conscience tells you, and one day you will be glad you can say you did all you could. A mug you are definitely not, we have to live with ourselves, don't we?

Just stand your ground and make your point, and that you won't be taken for granted or walked over. If that doesn't work, you will have to think of something else. Sometimes we are our own worst enemies being to willing and co-operative!

Take care,

Websailor

Do your family perceive that the Carers Allowance is your wage? If they work elsewhere and you don't, is that why they let you put in the hours? I hope you managed to make your point effectively, without it turning into a family feud.

My brothers and I consider ourselves to be "working carers" at the moment, mum was diagnosed with acute myeloid leukemia (AML) in September, but none of us claim anything, we all have jobs. What we have claimed is "Attendance Allowance" which gets paid to mum directly, she can choose what she spends it on, and she usually tries to give us some for petrol. A visit from me is a 250 mile round trip, for one of my brothers it's about 220 miles and we're both the wrong side of the Estuary so there's the Dartford Crossing to factor in. The other brother is nearer so it's a 60 mile round trip, but he works away from home a lot.

For us this is an shared responsibility - not one of us has any "power", legally, financially or emotionally. She needs 1 or 2 hospital visits a week for blood tests, transfusions or a bone marrow biopsy so we take each week as it comes. There are no stages to AML, it's terminal from diagnosis. She's already lived past the first prediction of life expectancy, but we know there's a very short time left.

Communication is the key for us. Emails ping back and forward most days, with information, thoughts or just to touch base after a visit. We use a communal "Dropbox" so that whoever takes mum to hospital can update all the blood counts on an Excel spreadsheet and we can all instantly access it on phones or laptops. We're all getting expert at understanding Hb, platelets, WBC and neutrophils, I have added all the normal ranges and the treatments needed when any drop, so we're likely to know when she's due a transfusion before the Dr has even been along to the day ward to book her in.

We have another list in the Dropbox of available dates so whoever is with her can book the next appointment by looking who can take the time off. Once or twice none of us could take her, and when she was last admitted to the isolation ward there were days when no one could visit, but at least we had the security of knowing she had 24 hour care.

I think my point is that it doesn't matter which one of us takes mum for her appointments or goes to visit, we all know exactly the same, so we're interchangeable as carers and the hospital staff are used to that. In fact our instant access blood count spreadsheet has been much admired!

GB, how much do you communicate all the daily counts and records with all your siblings? If you were ill, could one of them slot right into the carer role and be up to speed with everything? Look after yourself too.

I've been hanging on to see if Friday's chat with my older brother caused any momentous shift, but nothing's happened, re my mobile phone or my bank account (just checked).

Yes they all know I get Carers Allowance and Income Support tops it up to £105 a week. I keep a Carer's Log, a blank book/ring binder which I write in every day. I'm on my second log, and that's almost finished. In it I record everything from time of arrival to time leaving, what mood Mum is in, how she is, what I do (for her) what I do (housework) what I need to do, etc. My sister writes in it too, usually that she's bleached the sink because it was brown, or slung the bread because it's close to its sell-by date. My younger brother only writes in it when he wants something to happen immediately, like get the chiropodist, hairdresser in, etc. Even though I recorded the previous week that I'd ordered both, we were just waiting for the appointments. I have tried to suggest a calendar where people can note their visits? I didn't think this was unreasonable considering Mum's poor memory, she tells me she hasn't seen anybody and no-one has been, but my previous week's invoice has gone from the breadbin so I know my brother's been or there's a note in my log from my sister.

I was ill last September. I missed the previous days to Mum's birthday (1st October) and the day itself, I was off for a week. My sister tried to fill in but one of the regular carers reported to me that Y wasn't coping very well. We had the two consecutive daily incidences of Mum being dressed in knickers instead of conti-pants (including her birthday) and this is what my sister found upon turning up with a birthday cake after work. None of the carers during those days had noticed/bothered to check Mum's toileting needs. They had, of course, all assumed I would be there... if you scroll back to that date in this journal F43348?thread=8299367&skip=500&show=20 you'll see what I recorded.

A few weeks ago when we were on flood alert I took my and moved in with Mum so I could be on hand to help evacuate her or at least move portables upstairs in the event of flood. It got very close, the sirens went off but luckily we weren't flooded. As I live alone, my bungalow would have been inundated and nothing saved, if we had. I'm not sure that thought occurred to my sister, who begged me to move in with Mum, or my brothers, from whom we heard nothing. The fact that Mum has remained in her own home for the past year is down to me, which Ian has remarked has saved the family some £400-500 a week in Care Home fees (what they pay for his Mum). I don't think either of them (local siblings) would step into the carer role, and I guess it will still be up to me as I get the Carers Allowance, should I have to take a job to make ends meet. I feel like the general dogsbody and it's very rare that I get thanked. The only person who ever phones me in advance of a visit to ask if any shopping is required is my sister-in-law, older brother's wife. That's because they did all her mother's shopping up to early last year, her sister was doing the caring and their brother was doing the finances. She told me on Friday that they have no idea how I am coping.


I am really sorry to hear about your Mum's illness coelacanth. It sounds like you have a great system in place with your siblings and you're all on equal footing and you get due respect. This is what I feel I am lacking.

I wrote about mum's diagnosis in my NaJoPoMo, but nothing very high profile here. One of the first things we did when she was diagnosed was to get together for a Sunday lunch planning meeting, where we brainstormed and sorted out some very practical things. We've had one more meeting like that in person, but due to geographical constraints it's mostly all done by email and Dropbox.

But as I said, we're interchangeable, if we forget to tell mum which one of us is taking her for her transfusion, she doesn't mind, she likes the surprise. And of course mentally she's as sharp as a pin (even if her hearing isn't) so she remembers who she's seen and what they said. She knows we track her counts and email each other, although she might not like what we say if she knew! Recently we've all separately experienced Waitrose when it's full of pensioners whizzing around with the wrong glasses on, fired up by the free coffee. We call it Blue-Rinse Rollerball.

You "care and cope", and your siblings "visit". There's a big difference.

Can you set up an email round robin? Take a photograph of the carers log and text it or email it every day or so? That way everyone gets to see it regularly. Could you formalise their visits so that there's a proper rota and they take turns to do one day a week or a fortnight of caring? Even people in jobs can book days off if they know in advance. Have they even had a discussion with their workplace about the situation? They might be able to take some additional paid leave.

Well a big thank you and pat on the back for all you are doing GB, but that doesn't alter the fact that you are being taken for granted. People who are left totally to the mercy of carers fare very badly most of the time, and the hundreds of pounds a week families have to pay doesn't guarantee they are well looked after.

You need a family meeting somehow, as it sounds as if some of the family are concerned about you and might support your views.

you are a

Websailor

time to be the foreman GBand take the reins, nip some ears as you make them listenin other words! treat them like kids and that they have tasks to do - before play

Thanks everyone, I appreciate having this opportunity to vent and rant.


I've already tried all that coelacanth, and got nowhere. No response. They leave me to do everything while they visit as it suits them. My sister is shopping for a wheelchair this week, so much for my "no" vote. I did a shopping run yesterday to top everything up but from now I am getting stuff Mum needs on the way to hers, at her local Spar shop. We'll see what happens when they go to the fridge and find no "milk for visitors" bottle? They can bring their own milk from now on. But this makes me feel mean and petty.

I saw my younger brother and his wife on Sunday during the 8 hours I was there, they stayed 1½hours. When they left he told Mum he was fetching her fish & chips in on Thursday after work then he turned to me and said "can you leave a note for the Thursday tea carer not to feed Mum?"

Why didn't I respond "why can't you do it yourself?" instead of just nodding mutely? I am such a doormat.

um, not a solution to the real issues

How do you feel about online shopping GB?

I would be tempted to get my Mums shopping and my own online, home delivery to your convenience and share the delivery cost. Then I would go through the receipt and highlight all Mums stuff, staple the total to it because I like high lighting and stapling and having my receipts in order. I do not like shopping at all so that would be a huge bonus for me also.

I would also work out a cost per mile for other things like hospital appointments etc . You know if they want to make alternative arrangements then they should feel free

Just because you've tried something and got nowhere doesn't mean you should stop! If at first you don't succeed...

Keep chipping away at the resistance. For example, Carers Allowance is for 35 hours a week. Do you list your daily/weekly hours and sent this to your siblings? What happens when you go over the 35 hours? Do you let them know? After all, it wouldn't affect the Allowance if you were doing a tiny little bit of part time paid work (and this would help your income), so if they aren't helping with the care then you're being prevented from earning. Once Andrew left home you could have been in a full time job, contributing to a top-up pension, so there are long term effects on your own future.

Keep plugging away at them, they will always flog a willing horse if they can get away with it.

I know it is horrible to have dissent between family, but you really have good cause to be resentful GB!

If they can't or won't contribute practical help, they could at least see you ok financially, after all, as you say you are saving them a fortune.

Most of us feel we have a duty to our parents, but that should be shared by all, not laid on the shoulders of just once.

Hang in there till they get the message. If you don't you will knock yourself out and then where will they be? You are still to some extent in recovery from your own health issues so take care.

Websailor

There's a family meeting happening tomorrow at 5pm at Mum's house. My brother's fetching fish & chips, I'll make him wash up too!

Attagirl!

a 6ft bull whip and cattle prodbring them into line to do their fair shareinc costs