No sh*t Sherlock.

[plum]

I've never cross-pollinated on the forums before but I shall post this on both tmshelp and wiki. I have no idea how many carers post or read but am absolutely convinced they carry a heavy, heavy load.

Folk at tmshelp are already aware I care for my husband who was devastatingly diagnosed with young-onset Parkinson's disease almost 5 years ago. Carers really are hidden, neglected, forgotten.

The following is from MSM and I am re-posting rather than linking should the link fall off the cliffs of time.

Carers 'facing depression risk'.

Carers should be routinely screened for depression and mental health problems, doctors' leaders say. The Royal College of General Practitioners (RCGP) warned that carers often "neglect" their own healthcare, and found that around 40% experience depression or psychological problems. Holding routine appointments and maintaining a carers' register within GP practices could solve the "hidden" problem and prevent the £119 billion carers save the public purse being lost, the RCGP added. Dr Clare Gerada, RCGP chairman, said: "Carers often neglect their own healthcare needs and in many cases it is only a matter of time before they themselves become ill. "They are at risk physically and emotionally with stress-related illnesses but it can be hard for them to admit that they are struggling."

She told BBC Breakfast: "Unfortunately at the moment as with the rest of the health service, GPs are heaving under the workload and what this report is saying is that we have to target resources where they are most needed and they are most needed with carers. "There are serious problems going on at the moment across the whole of the NHS but in particular in general practice, but what we mustn't do is forget the hidden group of those that need most care which carers are most certainly part of." Dr Gerada said that the UK's seven million carers are a "critical asset" which need investment as "they already save the public purse £119 billion a year". She said: "If carers fall ill you lose two patients. You lose the person they are caring for and also the carer so it makges financial sense to keep carers well." The RCGP has drawn up a nine point checklist as part of new online guidance which also includes appointing a carers "champion" in all GP surgeries, and carrying out audits to measure improvements in carer support.

I receive just shy of £60 a week for full time care. No one has ever bothered to discuss my husband's illness with me, no one has ever asked how I'm coping. About three years ago I began tests for fibromyalgia but pulled the plug on discovering Sarno. My doctor, who knew about my situation, told me to take painkillers and basically go away.

Who cares for the carers?

 

[njoy]

Hi, Plum. My husband cared for his mother for 8 years before she died and the toll on him was enormous. In the beginning, he was supposed to be working while I did the caring but she didn't like me (thank you, Lord) and soon drove me out. I got a job in a nearby town (yeah!) and made the money. My own parents had the good grace not to linger. Lots of people are not so lucky.

As to your question: "Who cares for the carers?" the answer is "everybody" or "nobody". It almost amounts to the same thing. I did what I could but my husband always felt I should have done more because he was so stretched. About sums it up.

My husband, like many caregivers, didn't get paid anything. I really can't imagine what the world will be life in 20 years or so when the "old boomers" are ancient and even the youngest boomers are in decline. My friends and I are considering an Abbeyfield House system (6 or more oldsters who live together with one housekeeper). The trouble is you don't realize, when you are young, how impossible it becomes w/o of spending enormous amounts of money you probably don't have. You ARE dependent and there are fewer people around to help than you expected.

Leaving the care to any relative who can be coerced into the job won't always work. People who are willing to sacrifice their lives for love and duty are getting to be few and far between.




.

 

[plum]

I adore your sense of humour. Laughed aloud at 'thank you, Lord' then had to explain what had tickled me. Cue Radical Honesty moment as my mother-in-law is a bl***y awkward women so I said it like it is. I thank god she pays for her own carer because I'd make for hills otherwise.

But really that is the harsh truth. My mum cared for her mother and sister til both died and everyone else made themselves scarce. Can't blame them but don't send them Christmas cards either.
I remember working with a woman, many years ago, who was a former nurse in an old folks home. Her main ambition was to save enough money to pay for a decent place when the time came. I was young and happy and thought it twisted but now I know the private homes are many hundreds of £'s per week and even then, even then...

Mostly I thank you for answering honestly and lifting my spirits.

Oh, and I should add that I think the medicalisation of care is decidedly dodgy. Our government is as useful as a balloon on a stick at the best of times. I dread to think of the field day the pharmaceutical companies would have. In the end, that's what would happen.

 

[BruceMC]

You will notice, Plum, at the beginning of this talk by Gabor Mate' on "Caregiver Stress" how the length of the telomers in the chromosomes of caregivers of dementia patients actually shorten the longer care-giving goes on:

http://www.tmswiki.org/forum/media/dr-gabor-maté-how-stress-can-cause-disease.39/

That is, unless a caregiver takes time out for self-care, their life span literally begins to shorten. Otherwise, as the title of Dr Mate's book suggests, the body begins to emphatically say, "No!"

cf Telomers: http://en.wikipedia.org/wiki/Telomere

I know from my own experience with TMS, that the onset of my symptoms began a short time after my mother died after I had been taking care of her for over 5 years, and she was suffering from dementia. The hero role can often blind us to what we're actually doing to ourselves until the results become all too obvious.

 

[plum]

Bruce, thank you.
I'll take some time out to watch these later.
Happily I'm doing something lovely today.

I appreciate your words on playing the hero. That is an undeniable aspect. And bless you for sharing how your caring role was a key factor in tms. My mother-in-law cared for her husband who had Alzheimer's. Within a month of his death, she had a stroke and is disabled and housebound now. Musing on this, I realise how much I've seen of the realities of care and it is never pretty. Doubtless this has been bubbling away in my personal shadow.

Again, many thanks.

 

[njoy]

Plum, thanks for your response, which cheered me up enormously. I posted on your thread on the other forum that it isn't ONLY abject self interest that makes people run for the hills. Some of us become truly evil when faced with a helpless person who is no fun to be with. I think it is partly a matter of temperament -- I am fine with teens that no one else can stand but I was not a good mother (although I tried really, really hard) for little kids and I would not be a good caregiver for an old or sick person. They deserve better than me.

Considering our own future, my husband announced long ago that he prefers the service model to the medical model. He said he wants to move into a cheap Mexican hotel and pay the staff for service. I said, "The bellhop isn't going to wipe your bum, dear" but he responded, "He will if I pay him enough". There's truth in that.

Mexico is not as cheap as it once was so we may not be able to afford the service model. The concept is sound, however. Two winters ago, we spent two months in Chiapas province, near the Guatamalan border. We paid $ 20 a night for a big room with ensuite and free breakfast. The staff loved us (we are nice to them and we tip) and dinner was a short walk away, also cheap. It would not have been very expensive to hire a nurse or two (not the high tech kind, the kind that actually nurse) to come in to look after whatever we could no longer do for ourselves.

I suppose that none of this helps you, dear Plum, unless you can decamp to Spain. If so, that's what I'd do.

 

[njoy]

Btw, the medicalization ship has sailed with regard to old people. Being one myself, I have personal knowledge. At least in my corner of Canada (and I doubt it's much different, elsewhere), you go see the doc, he or she gives you a prescription, you take it and get sick, he or she gives you more meds for side effects, and before you know it you'd rather be dead because you feel terrible. Most people are afraid to just say NO to drugs but I'm not one of them. Now, I am labelled "non-compliant" and while some doctors will still see me (not that I go) they have no further interest in my well-being.

One of the joys of getting old, for me, is that I focus on small pleasures and don't really give a rat's patoot about longevity.

 

[Forest]

One reason that carers have such poor health is that they compare their needs and problems to the person they are taking care of, which leads to a ton of repression and guilt. Who am I to complain about not being able to go out, when my father, wife, child, or whoever is lying in bed with cancer. It is very easy for this to make one feel ashamed for having any sort of resentment towards the person

 

[plum]

njoy, I'm with you completely. The Spanish option is a serious contender. I have one foot in bucolic fantasy, the other in a place in the sun. Equally I amuse myself with daydreams of devolving into my later years as a yogi, but this jostles with a more rock 'n roll Thelma and Louise style finale.

Forest, exactly. Comparisons like this, which are often unconscious, usher in a raft of auxiliary emotions. In the excellent video Bruce recommended, Gabor Maté addresses the assumptions of reluctant care, i.e. by default the burden falls on someone's shoulders and this is invariably a woman, and the dire consequences of this.

Bruce, I posted the link on tmshelp and it is gratefully received. It really is life-saving. Bless you so much.