can we avoid care home charges

Dunroamin

thorsoak wrote: »

Macmillan were so supportive of us as a family - when we said that Adrian wanted to come home, and that we wanted him home, they were brilliant, and acted as co-ordinators for all the equipment that was needed - bed with bells and whistles, commode etc; co-ordinated with our doctors, district nurses and carers, helped filling in forms - etc etc etc. Once he was home (within 24 hours of us saying that we wanted him home) the local Macmillan nurse was round to introduce himself to Adrian and from then on he was the person to whom OH would talk, expressing his fears and frustrations. He also attended the funeral (along with our lovely district nurse) and who was instrumental in organising bereavement counselling for two of our sons - and not even in the same locality.

That's why I want to give back.

Such a shame that this sort of help is only available to cancer patients, the rest of us have to bumble along and manage as best we can.:(

Mojisola

Dunroamin wrote: »

Such a shame that this sort of help is only available to cancer patients, the rest of us have to bumble along and manage as best we can.:(

When my friend's husband was really ill and they were struggling to cope, a nurse at the surgery said to her that it was a shame he didn't have cancer because then there would have been lots of help available for them.

Dunroamin

Mojisola wrote: »

When my friend's husband was really ill and they were struggling to cope, a nurse at the surgery said to her that it was a shame he didn't have cancer because then there would have been lots of help available for them.

I don't begrudge cancer patients and their families the help they get but I do wish that it could be spread around more evenly to include those with other equally life limiting conditions.

Mojisola

Dunroamin wrote: »

I don't begrudge cancer patients and their families the help they get but I do wish that it could be spread around more evenly to include those with other equally life limiting conditions.

That's what my friend said.

The help should be available according to the need, not the diagnosis.

spaniel_dog

thorsoak wrote: »

Well - if you knew so early on, why did you not just say "thank you" and that would have been an end of it!

As it is, it has left a very sad feeling with a lot of us ...at the age of 70 I have only just started my "training" as a Macmillan volunteer - and you have been so harsh that I'm in tears and don't feel like going back. Yet I do know that Macmillan desperately needs more people who have gone through what I (and my family went through) as volunteers.

Please read through your posts as if someone else has written them - and maybe then you might feel some humility.

I do hope you continue training I find support groups invaluable, only advice I would give is look back where you practically said I was lying about having cancer and think was that a nice thing to say
I wish you luck

Errata

Dunroamin wrote: »

I don't begrudge cancer patients and their families the help they get but I do wish that it could be spread around more evenly to include those with other equally life limiting conditions.

I do take your point, but the majority of support for people with cancer comes from charities eg Macmillan, Cancer Research and local ones. I would imagine there exists charities which give support for a great many diseases and illnesses, life limiting and otherwise.

lostinrates

Errata wrote: »

I do take your point, but the majority of support for people with cancer comes from charities eg Macmillan, Cancer Research and local ones. I would imagine there exists charities which give support for a great many diseases and illnesses, life limiting and otherwise.

I think cancer is such a 'big' one, a scare for all of us and so well known it gets far more in charitable receipt than the charities for some other life limiting conditions do.

My 'main' condition is really rare. ( I have as a result a plethora of other issues) and there is nothing. But I'm ok with that, I probably wouldn't avail myself of it.

Some of the smaller ones have online support groups and forums and charities which are superb for getting information about and online support, and sometimes phone lines(which I don't use either). but no actual practical help that I am aware of.

Dunroamin

Errata wrote: »

I do take your point, but the majority of support for people with cancer comes from charities eg Macmillan, Cancer Research and local ones. I would imagine there exists charities which give support for a great many diseases and illnesses, life limiting and otherwise.

Put it this way, how many British Lung Society charity shops have you ever seen? The help they offer to patients and carers is on a par.

The various hospices are supported by charities but getting a place with something other than a cancer diagnosis is about as likely as a large lottery win!

Errata

Dunroamin wrote: »

Put it this way, how many British Lung Society charity shops have you ever seen? The help they offer to patients and carers is on a par.

The various hospices are supported by charities but getting a place with something other than a cancer diagnosis is about as likely as a large lottery win!

TBH I've never seen one anywhere. Perhaps the support for cancer is because the proportion of people in the UK who got cancer during their life was 44% in 2010 and that figure is increasing, which I suspect is far in excess of the number of cases of lung disease.
Both my local hospices support people with lung disease through in-patient and out-patient services and self management support.
Cancer support isn't a level playing field. Someone with breast cancer will be offered far more support than someone (like me) with an uncommon type of cancer. I could get narked about that, but prefer to use my energy elsewhere.

spaniel_dog

if I can say not just to Thorsoak but any who want to offer support, from one who has been at other end both in the past and present
first be good listener, dont be judgmental, dont make assumptions if you dont know all the facts, dont tell a patient to 'get back under your bridge' #175 dont tell a patient you think they are not telling truth about having an illness#245 #250 and if someone is not hearing what you are saying #263 then find another way of saying it.
I started this thread to ask a question, you may not like the question but it did not warrant the venomous comments. Not trying to be sarcastic but if was me I would suggest thorsoak perhaps print off all the pages from #1 take them to one of your classes use as example of what you may come across and how it should have been responded to, I will be very surprised if much support is forthcoming but would be good for you to report back what the professionals think about it all
by the way I have just discovered what a troll is, did wonder all the times it was said and now I know I have been in company of children
I will sign off now and go sit under the bridge