Family carers of people with schizophrenia are a hidden workforce at breaking point

Family
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Approximately three out of four (72%) carers of those living with schizophrenia, are mainly (34%) or solely (38%) responsible for caring, placing a huge emotional and physical burden on them, according to the preliminary results of a major international survey revealed on World Mental Health Day (#WMHD14). The Caring for Carers (C4C) survey, which is on-going in 25 countries, is being undertaken by the European Federation of Associations of Families of People with Mental Illness (EUFAMI) in collaboration with LUCAS, the interdisciplinary centre for care research and consultancy of the University of Leuven, Belgium.

The first results revealed October 10, 2014 are based on responses from more than 400 carers in Australia, Canada, France, Germany, Italy, Spain and UK. It provides evidence of the immense and unspoken burden on people caring for those living with schizophrenia and highlights the contribution they make, and the overwhelming impact this has on their own lives.

Family carers perform their caregiver role for an average of 16 years, are likely to have to do so for the rest of their lives, and report an average of 23 hours a week caring for a loved one, due to the undetermined and long-term nature of schizophrenia. This amount of care equates to a part time job.

In the EU, there are approximately 10 million family carers caring and supporting their child or sibling with a serious mental health condition on a daily basis. This is a massive and valuable contribution, not just to individuals, but to society as whole and to the financially strained healthcare systems across Europe. “This hidden workforce of family carers is a lifeline for society and we must take steps to ensure they are fully recognised for their contributions, their voices are heard and they are supported in order to allow them to continue caring effectively and safely for their loved ones, without putting their own physical and emotional well-being at risk,” Kevin Jones, Secretary General, EUFAMI, said today.

Although about one third of the carers report positive experiences of providing care, the survey also indicates that almost 4 out of 10 battle with feelings of being unable to cope with the ‘constant anxiety’ of caring and one third feel depressed. More than 1 in 10 carers worry about feeling isolated and experience strains in their social network because of the care they give

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Wow, that is a lot if behind the scenes work.

I think about how my family coped and I really do believe it’s because they didn’t try to do this all alone. It blows me away how many care givers try to tackle this alone with no out side help.

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I can certainly relate with this portion:

Positive caregiving experiences are eclipsed by the fact that there is a degree of dissatisfaction with the level of, or lack of, support from care professionals. Ninety two percent of carers surveyed want more support on several domains.

The survey highlights carers’ desire to be more involved in treatment conversations and to be better equipped to influence care decisions.

“There is a lack of support and dissatisfaction being expressed by family carers. Thirty eight per cent feel they are not taken seriously by medical/care staff and forty four percent are not feeling satisfied with their ability to influence important decisions in treatment and care planning,” said Kevin Jones, Secretary General, EUFAMI. “Healthcare professionals need to acknowledge that family carers can play a much stronger role, integrate them in treatment decisions and work together to achieve better outcomes for the patient. EUFAMI has been calling for this approach for many years.”

Aside from the financial problems that can arise from staying at home, butting heads with medical/care staff over privacy laws etc makes care-giving all the harder. It’s like: Yes I feed him, cloth him, comfort him and give him his medications BUT I’m not allowed to know… anything including what medications he is on. Quit the conundrum.

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I am not surprised when hearing the statistics in this article. People who are not involved in care giving have absolutely no idea what goes into it, and the emotional toll it can take, and the difficulties of balancing your own needs with your loved ones.

I have two family members under my roof with serious, chronic, and mental health issues. My schizoaffective daughter and my PTSD, TBI husband. For a while I didn’t work. I know that statistic about 20 hours that a caregiver provides-well with two people in my home in need of caregiver that is was a full time job right there. Not only did I have to balance my needs against each of theirs-I had to balance their needs against each other’s to provide my support. And yet with family and friends, instead of being offered help, I was often the go-to-person to ask for help-because, well, I wasn’t working. I had time. This was not out of meaness, simply out of ignorance.

And the medical community could be the most stigmatizing, infuriating SOBs out there too. Some were amazing and wonderful, but in other cases I met with extraordinarily dismissive attitudes-which is infuriating under the circumstances, or even outright hostility in some cases! I have actually been told the situation is my fault-if you can believe it. Often I felt like I had to “prove” myself a loving mother and a good caregiver (also a good wife and caregiver with my DH) with some of these people.

Study after study shows the importance to those with health conditions of having good, quality support systems, over and over and over again. It’s a no-brainer. And yet often caregivers are a non-equation in a treatment plan, are treated like an adversary, or superfluous, and given almost no support what-so-ever. It’s a travesty. It’s ridiculous. It’s counter-productive. As you can tell-I get hopping mad about it too!!!

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**AMEN!!!..good grief-this has caused more problems than I can count!.

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**I think this kind of thing was harder to fight than the illness itself.
Why do we have to fight for help on something so serious?When will the day come when this disease is allowed to become just that? When we can have the funding, the good doctors, case managers, etc…like any other disease. :frowning: **

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You know the answer to that. Prejudice against mental health. Stigmatization. I surprisingly found out medical professionals can be some of the worst.

In my opinion the best way to fight prejudice comes with a massive risk. People with mental health issues have to stand up and be counted-be open, and say “I’m not ashamed, and I’m not different from anyone else. I am not these stereotypes, I am an unique person. I can do things, I can contribute to the world. I can improve and evolve like any other person.” But with openness comes the opportunity for people to discriminate against them.

Personally, I think the heroic fight of anyone with a mental illness should be celebrated, not judged harshly. People without mental health challenges never have to fight for control of their own minds, live in a waking nightmare, never have to know the accomplishment it might be just to get out of bed in the morning, and face your worst fears or force yourself to do things your mind and body is screaming at you not to do. Every single accomplishment the rest of us take for granted as easy is amazing when people have to win a battle within themselves to do it. Most of us can’t win the battle not to allow ourselves that second piece of cake. I admire those fighting the good fight and I wish others could see it in that light. Give people a friggin break already when they do things that are hard, or when they fail (today) at doing something hard.

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Stigma-ok. But why should there be prejudice?
You know-I wish I could quit my job and go downtown and do …something, anything to help improve things. Maybe get an army together. Start a clubhouse. Get social workers more pay. Housing.
I am going to start looking at my retirement plans. I have been at this job for 25 years. Time to do something meaningful.

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Stigma and prejudice are pretty much the same thing. Stigma-IMHO is worse. Stigma implies that the characteristics which invite prejudice are a choice-prejudice just implies people have traits they are born with that make them the way they are. Both involve making judgments about people based off of stereotypes, negative assumptions about someone because of their association to a specific group. Discrimination involves action-denying someone their rights based on prejudice or stigmatization. None of it is OK. People are individuals-not an association to a group or the stereotypes that are connected to that group.

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mrs sith looked after me for 22 years…no help from family or friends or goverments or institutions or medical world.
mrs. sith had to try and work out a way of making me stable …without help.
but she did…very successfully.
take care

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**How??*…*Can I talk to her??? :sunny:

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As a caregiver, reading this article was something of a relief - to have someone actually equate all the time I put into caring to holding a part time job (albeit, an unpaid one).

Bridgecomet, I am certainly leaning more and more toward the “what can I do” stance myself… if only I didn’t have both a full time job and a part time job already!

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My dad has done so much to help me overcome this disease. He also volunteers at a hospital board to help them get funding and resources. I had delusions of persecution when I became ill, but those delusions are long gone. It hurts me to see my mom harassing him because she became sick almost 7 years ago and the system is set in such a way that she isn’t going to recover. That I was under 18 helped and my dad hospitalized me when I had a relapse at age 17, but I now see that it really benefited me overall to be back on medication.

So maybe people should stop being so afraid, and start supporting each other and those with schizophrenia.

If schizophrenia is such a risk to the public, then more people should be treated for it. There was an article in the local Journal about a homeless schizophrenic man who was shot 55 times by police officers when he ran at them with a knife. The video footage is published. The police got away with it, and the case against them dismissed. Why aren’t officers punished for using excessive force? Even if someone runs at you with a knife, it’s not life threatening with tons of officers and witnesses unless it’s a gun.

But all these stories about it show excessive force towards people who are holding wrenches, hammers, knives. These are scared sick people. What about the crazy woman who barged into the white house fence, she was killed too and left behind her daughter who was in the car with her at the time.

Family members are sometimes the only resource. If our system in the US helped more, then less schizophrenics would be homeless or roaming about with delusions and left in the cold like poor animals.

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I noticed a difference in privacy laws in British Columbia over Ontario. In BC an outside family member can be involved without the signing of a release. I found this huge and I will be happy when all provinces follow suit.

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My wife of 48 years has been the reason for our success. She was an RN when we married and I was diagnosed 4 years later after we had our two children.

To this day we spend a fortune on good nutritional food, vitamin and minerals as promoted by Dr Abram Hoffer back in the 80s.

Dr Hoffer used to say, “a cured schizophrenic is a schizophrenic who pays taxes”. To that end I have been able to support my wife and family, because of my wife, to the tune of $890,000.00 in income tax in the last 44 years since diagnosis. Too many SZs who tried the megavitamin (MVT) therapy made the mistake of stopping their meds. The result of MVT is it allows one to be maintained on less meds, not NO meds. IMO.