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I get what you mean,
Posted: Fri Oct 29, 2010 9:09 pm
I get what you mean, but hubby wouldn't contemplate not having them stay here. Their answer, I know, will be .... 'we'll all muck in and help'. They mean with things like preparing dinner, there'll be 7 adults at least and the clearing away, that's all. They don't mean actually helping with hubby, too close and personal.
I thought my friend of 25 years understood, but she's complaining about me never going over to hers or seeing her very often etc etc. It's true that if you say 'no' too many times, no matter what the cause is, you stop getting invited and people get the hump and you get forgotten about.
Son on south coast helps with hubby when he comes up and stuff like ramps for the car and shoving hubby across sliderboards for me. And daughter does her bit too, maybe not the physical stuff, but fetching things and holding things for hubby.
The rest of the family in UK stay well clear and don't help even if WE visit THEM.
There's not too many family left really anyway, we have very few people to actually fall back on in an emergency, with actual personal stuff which is needed every day. Same as thousands of others.
Friends have been accepting, but
Posted: Sat Oct 30, 2010 10:09 am
I have been lucky to
Posted: Sat Oct 30, 2010 11:05 am
I have been lucky to have had/still have a supporting family and kept close friends. However, there are some that 'disappeared' for a while, but I have to accept some of the blame myself, it was not always their fault.
I did have the opportunity to go out at times but I 'assumed' I had nothing of interest to talk about but illnesses and hospital etc. I 'assumed' would bore friends. I neglected to keep the contact up even if just returning phone calls.
So for a few, it was my own actions that 'pushed' them away. Reason I know this is when mam died they were all there for me, still are, and it was an open and frank exchange that made me realise how they had felt too.
I think we also have
Posted: Sat Oct 30, 2010 12:48 pm
I think we also have to keep in mind that for many people, doing things for a disabled or ill person is viewed as a big responsibility that they may not feel sufficiently confident about, even if we show them how. They presume we've had training (rarely), or at least lots of experience (usually), and that they might cause damage by doing it incorrectly, while we see what we do as a perfectly normal process that we learnt through trial and error.
Have you noticed that some people even avert their eyes in the street when they see someone in a wheelchair or disabled in some physical way? It's not their fault, they're just not used to dealing with it.
But frankly, I'd probably also feel uncomfortable if someone came to visit and offered to take Mum to the toilet or get her undressed for bed, and no doubt Mum would feel the same way. But if they're prepared to "muck in" and help out doing other things while there, then what's the difference - help is help however it's offered.
As for vanishing friends, isn't it a great way to find out who your REAL friends are? The ones I have now, I treasure with all my heart, because I can do without fairweather friends.
Our social life has been
Posted: Sat Oct 30, 2010 1:14 pm
Our social life has been evaporating over the last couple of years. We invite friend around for a cuppa or a meal (I'm assured that my cooking is not the reason), but they dont, always commit to a time or date. We think the reason is that people like to reciprocate, and we as can't visit them, because we can't get the power chair into their houses, and even if we could, the toilets are upstairs, or down stairs cloak rooms cant accommodate the 'chair'
It is worse since Jan has had her power chair. It's funny that the thing, supposed to make her more independent and giver the freedom to do things and go places, seems to have had the opposite effect. We know that, on the face of it she could use her old manual wheelchair, but she is not comfortable using it and it would cause her to be in pain the next day. So reluctantly we can't use it.
Our family is spread allover the county, our son in Edinburgh my sisters live in Luton and London. Jan has an estranged sister and two nieces. It's Jan's choice, so we don't have any thing to do with them (they live in Coulsdon, last we heard). we have lots of cousins, uncles and aunts all over the place(but not in Somerset). Like most families we see them at weddings and funerals from time to time,
This why Jan's Polio Fellowship Forum is so important for her. I have our Carers Forum too, but unlike Jan (she sometimes doesn't go out for 10 days), I go out almost every day, just shopping, however I do have the opportunity to bump into friends and acquaintances and chat for a minute or so.
People seem in our experience,
Posted: Sat Oct 30, 2010 9:00 pm
People seem in our experience, to stare more at people in power chairs than they do people in manual wheelhcoiars. Perhaps its because the bigger and the more com;itcated the wheelchari mean the bigger and more complitecated the disabelity of th eperosn in it. And thts double ugh to some of them.
Sorry about the typing can it be bother ed to dso it right, not lieke Fran at al its is.
When Rob and I go
Posted: Sat Oct 30, 2010 11:07 pm
When Rob and I go out together we have had people walk into lamp posts because they are staring at us. I don't think its our stunning good looks so it must be the scooter and the powerchair that does it. Doesn't help when Rob starts playing chicken with me or if we race each other lol My scooter has a slower start but when I get going I can pass him if he doesn't do a Schumacher on me. It annoys the hell out of my son that this scooter has a faster speed than my old one and I can beat him every time if he doesn't play dirty.
Re: Vanishing friends and family
Posted: Tue Nov 02, 2010 6:59 pm
I put this on facebook and got a big response.
"You find out who your friends are" ]
Never has such a quote stirred up such a strong emotion in Carers and the Carer For, I feel angry at so-called family and friends who conveniently disappear at the first sign of a life changing experience. Only 5% of people are born with a disability and the rest happens thrrough illness or accidents etc and it's just part of life. I strongly believe that a disability is what you suffer from not who you are, and it's bad enough seeing the loved one you care for feeling helpless unloved and unwanted, and then getting no moral support from those around you when they need it the most.
When all the care is done for a person, they are still the same inside.
On the other hand I feel privileged to come across the most amazing inspirational & devoted people who love for their loved ones and never give up hope on them.
I have to agree with the quote though sad as it may be
Life is too short to
Posted: Wed Nov 03, 2010 6:41 pm
Life is too short to waste effort on people that are not rich and deep enough for your love.
I was re-reading this thread and your words really stood out - Wow! So true & so profound!
If they disappear for such
Posted: Wed Nov 03, 2010 8:52 pm
If they disappear for such a reason, then they were never my true friends, merely people around me whom I was attracted to and who liked being liked.
But lets be honest here; friendship is a quicksand consisting of unspoken bargains and conditions: the best friend you liked to party with at 19 might not be the best babysitter of your kids at 29; the perfect lover at 29 might be an awful bore at 39; the awful bore at 39 might save your life at 49 by providing you an escape from your abusive and drunken husband; the abusive and drunken husband at 49 might turn into a devoted and contrite bible thumping teetotaler at 59 who pays off your gambling debts out of guilt; and so it goes on.
This I do know: the best die young, all the rest are fatally compromised!.
Friendship is about negotiating choppy and rocky waters; all friendship outside of myths and Disney cartoons is conditional, let's please not pretend otherwise by gift-wrapping our posts in flurries of sentimental twinkly pink stars. Even our beloved pets would probably eat us if they were sufficiently hungry and we were utterly helpless.
Our lives, like our loves, are imperfect: we don't even share the same vocabulary: as Byron said: "mans love is of his life a thing apart, 'tis womans whole existence" True love probably only exists in idealistic/romantic Victorian novels written by frustrated and utterly inexperienced spinsters.