IMPORTANT. Comments Needed! RE: Carers Strategy

Hi Jo,

I've only just come across this thread. I'm not sure that it will get a lot of traffic in this category, because I don't think many come in here. Yet, this is the category it belongs in.

I think this is an important topic that we should be discussing. If you are happy for me to do so, why don't I move this thread to the General Discussions category and see if we can get more comment?

Because of the Christmas break, you may not get many comments initially.

Let me know what you think, preferably via an email if you don't mind.

thanks,

Peter

PS: I am going to leave this post here for others to read, in the hope it may spur them on to comment.

I have had no experience in this topic. I have never had a carer, so I cannot comment. But I see this as one of the more important topics that need to be discussed by this country. In fact I see it as a silent or hidden epidemic that will one day cause us huge problems. In fact it already is!

While the govt is winding back services, it is placing more strain on families/carers to do all the work, but to also do it with little to no support.

We need to change this and one good way to do this, is to get the discussion going.

Peter

Carers need respite and communication for starters.

This has been an ongoing problem for many years now. In fact as far back as I can remember. When I was caring for my mother, I was lucky, because my father was a WW2 vet. and she was covered by VA. However, I had no idea that I was entitled to anything until she became quite ill in the last 6 months of her life. It was only then that we found out that there were services available that we never knew existed. There was also some respite available that I used to do a small amount of voluntary work and then some shopping on the way home. I knew that someone was with her, so I didn't have to worry.

Kebsa has mentioned a similar thing in her last post I think. There are all sorts of services available that people don't know exist. I am speaking of SA here, but it may be the same in other states. I am not sure what is covered by state governments and what is covered by the federal government.

Unfortunately without respite many carers burn out. Particularly parents who are caring for adult handicapped children and who get no respite. We also have a new population of people whose carers face enormous difficulties and they are the returned war veterans. A significant number of them suffer from PTSD and/or traumatic brain injury. It is very difficult to care for someone who suffers from these conditions if you have small children as well. Or you may be aged yourself and you may have a parent who is 90 years old and who has PTSD.

I could rant on about this for ages, but that is enough to get the ball rolling 🙂

Mary

When it comes to carers and disabled children, it's not only parents who have trouble getting respite, a lot of grandparents are now looking after disabled grandchildren full time, speaking from experience. When dealing with department involved with the care of the disabled you are never told what services are available, or what allowances can be claimed. Most are found out by word of mouth through connecting with other families, or by asking why such a service is not provided and they say it is. There needs to be an open communication between these departments and families/carers, all information on what is available should automatically be handed out, currently it does not, leaving a lot of families out of pocket, which is harder when they are on pensions.

Don

i know that here in south australia it used to possible to get respite for carers for a couple of weeks per year, it was aimed those caring for people with high needs and involved basically funding a couple of weeks in a nursing home or hostel, and it used to be advsied to consider splitting into 2 halfs and have 2 breaks a few months apart but my visiting carer told me that one of here other clients wife had been trying to make use of this respite care and while the funding still exists its getting harder to use, it has become more like crisis respite and it seems the idea of splitting the 2 weeks up into 2 single weeks and prebooking it is not really possible anymore. her other client had been told it was just once a year now and she had to wait il she needed the time then she had to ring around a huge list of care facilities to try to find a bed, this lady went to an italian community clu instead who funded a few days care so she could visit her sisterp the offical sister was just more stress! thats sad! i had also heard from a variey of sources that the respite venues were so depressing that the person needing the care hated the idea of going again- it seems they are often in demeitia wings of nursing homes and if you are a younger person or someone who is older but mental alert, those demtia wings are really tough and certainly not restful - so it can be the souce of arguments and increased anxiety for both parties and the source of guilt eg how can you leave me here and have a nice rest, am i that much of a burden!

It needs to go back to a system that can be booked not just when you get to the edn of your tether, but something that can be looked forward too and booked weeks or moths inadvance, it most certain should not be beds in the demtia wings of aged care facilities! For respite to be effective and not lead to guilt, resentment etc and be trully effective it needs to be pleasant for the person needing care. ideally i would say that means having the care to remain in their own home would be ideal or failing that since they now use the group home mode for disabled who need residential care rather than the nursing home model, whats wrong with having a few of these homes either specifically for respite care or that have the ability to take one person in for respite along with their usual permanent residents (remebering thse are usually homes of 3 or 4 disabled tenants at a time in a more typical homely environment. At the risk of offending some, i think its important to pay attention to the quality and type of respite as the person needing the care needs to be able to "take a break" just as much as the carer. i can tell you in my professional working life i saw a lot of tension between long term couples because of the stress of carer/careee relationship, i can't begin to tell you how often i saw a so called normal married couple relationship change to more like a parent child relationship because of illness and disability and one reason that happens is the stress involved for BOTH parties. So that the Caree needs the respite just as urgently and that is not what a person gets if they have all their wits about them and have to spend a couple of weeks in a dementia wing!

i would also like to add that i have come to believe that even people like myself need to be able to have some respite occasionally, As i have said before live alone, have no family and could be descibed as socially isolated thanks to the effects of disability. i have one hour paid carer per day and i certainly treasure her, she is worth her weight in gold and then some! but i still have to self care 23 hours per day and thanks to high out of pocket medical expensesand fixed income of the pension, i can't afford a holiday or break! if i had to apy to transport or rent all the equipment i need and pay for a carer at the destination, it would be an enourmous cost! IT'S fare to say also that while i am grateful for my one hours help, over time i get quite exhausted trying to keep up with housework and luandry etc. about a decade ago i was contacted by a charitable foundation and they told me that they would fund a weeks accomodation in a holiday home they had in vitor harbour, i could take someon withme, they would take my electric wheelchair and showerchair down and pick me up in a week! apparently i had been nominated by one of the health professionals i was seeing at the time. i think it was the rehab physio but i don't know, but it was great! I have often thought how valuable a few days away would be now to me and others in my situation (severly, permenantly disabled living alone) yet when ever i read anything related to respite it is always dependant on providing relief to the carer and the implication is that we do not need respite - its just year after year of struggling just to keep your head above water no hope of anything more than that!

so to summerise
respite that can be booked either as crisis relief but preferably prebooked to prevent crisis, perhaps one week every 6 months minimum, respite should be in and age/disability relevant location such as smal group homes in the community, residential aged care facilities only to be used if that is consistent with the clients level of care

respite should be looked as a need for both the carer AND THE CAREE! the current mode of looking just at it from the carers point of view can lead to resentment and tension making arranging future repite even harder.

singel people with disablities who generally mostly slef care with only limited paid carers, no family etc also should be considered to need repite- short periods either at home with greatly increased care but preferably a short period in the same kind of supported care home previously mentioned.

lastly this is something i have felt strongly about since i was an RN working on the medial and palliative care wards. I worked in the public system but i don't think the provate system would have been any different. WHen person suddenly became either sick enough or acquired a disability that meant they could no longer manage self care, it is instantly assumed that family members are going to take over the role of carer. For many that is fine but there are always situations where that does not work well either because of family history that is not spoken of publicly (the adult daughter who was physically or sexually abused by the parent), It seems to be forgotten that these days it can take 2 adults working to be able to really keep a fmily afloat. then they are epected to have more direct supervision of kids after school activities, ,its no longer acceptable to leave the child at netball and come back later, this is since all the abuse allegations by coaches etc, it's not acceptable for kids to come home to and empty household because mum and dad are working - so ther is more demand on their time perhps these days than previously certainly when it comes to after school activities. But besides all this the CNC i worked under for many years on a medical/palliative care unit put it very well when she said that there are times when a family or a friend should be just that- not a carer because it really can change the dynamics of the relationship to more parent child than husband wife and that is just another level of loss to go with all the health and vitality that has gone.
IT should never be assumed or expected that a family member will become the carer, especially when physical and intimate care is required .I've seem far too many situations where an adult daughter (not son as often but it does happen) says they are not able to take on that role and there has been a lot of very negative judgmental stuff said about the daughter/son!. I know there are cultures and families that do rally round to support a family member but that tends to be an extended family not just one person, it still may not be what the patient fells most comfortable with, I have often heard how they feard being a buden on the kids etc. personally i think a persons care requirements should be arrangedusing family as an extra if that makes sense , perhaps then family relationships will not be such a big victim of chronic illness/disabilty

sorry, i don't think i am explaining it well but i think some of those who have nursing rxperience will understand what i am saying about how the normal relationship can change from partners to child parent and so on when one takes on a carers role. I have had more than one patients partner say that they still love the partner but they grieve for lost intimacy ( and i do not mean sex) but when most of the time you are acting more like a parent it gradually erodes that feeling of intimacy and that is really sad

Thanks for the replies thus far.

Any further input much appreciated!

JoT

Here is something that should be raised with regards to carers. It probably isn't the type of thing you were thinking of but it is a national issue so will affect carers in NSW as it will all the other states.

For the past 10 years I have had carers that were paid by Centrelink. The pay is bad at $424 per week, so I try to find young people who still live at home. I have found students to be the best, especially if you manage to jag someone who is studying nursing or disability. Prior to having the idea to find students, I had a pothead who did cash in hand work as a babysitter to make ends meet; my son from the age of 16-21; and then an alcoholic who couldn't hold down a job and was obviously not reliable.

The problem is that previously they got both the carer payment and carer allowance for a minimum of 20 hours per week personal care. Bear in mind that under Centrelink rules personal care does not include doing housework, cooking, shopping, driving to appointments etc - but you can include things like massage and supervision when it is necessary. So they are expected to do the other stuff for love supposedly.

Anyhow, when my last carer applied, we find that they now expect carers to do at least 30 hours (well the rules are vague) or the equivalent of a full-time job of just personal care. They approved her for Carer Allowance (115.40 per fortnight) - which used to be a supplemental payment you got after you were approved for Carer Payment.

They used the fact that she was a student against her - even though the rules state that as long as you don't work you can study up to 25 hours per week including travel time, and carers qualify for the Pensioner Education Supplement AND my last carer (who was with me for 3 years) was a student.

We appealed and lost and now are looking at going to the tribunal. I have given my (now former) carer all the money I had saved up for a new mobility scooter so we both want a win at the tribunal as it will be more money for her than I have been able to give and she will then pay back my scooter money.

The main difference seems to be that approval is no longer done locally - so there is no face to face anymore, but there has been an obvious policy change. Things have been turned on their head and rules changed or tightened to make it much more difficult for carers to get an amount they might possibly be able to live on.

I now have a new carer who started on Wednesday. Fortunately, she has savings so can maintain herself for the minimum 6 weeks that it takes for Centrelink to approve or deny a claim for Carer Payment and Carer Allowance, who is not a student and helps care for someone with an illness (so his carers don't qualify for any Centrelink payments at all) the rest of the time.

I hope you will raise this as it affects all people applying for the Carer Payment for the first time, or even reapplying for it, it would seem.

There is still time if anyone wanted to add their two cents to this topic. The Summit will be held at the end of March to discuss input, so please if you have something to say on the topic of caring- be it from a caree or carer perspective- feel free.

Thanks
JoT