Thursday, July 28, 2011

Why You Need A Care Plan - For Yourself!

Most carers have a care plan for those they are caring for. It may be an informal plan, existing only as a kind of fuzzy collection of 'must do' and 'must remember not to...' postit notes in the brain. But they have a plan.

And that's good news because caring for someone takes an enormous amount of effort, of strength and of patience, so creating a care plan is a good way of keeping things running well. At least, as well as they can.

But whether you have a complex ten page Excel spreadsheet detailing every facet of your loved one's needs and requirements or just a vague determination to do your best for them, you have taken the first and possibly most vital steps to ensuring their safety and well-being for as long as they remain in your charge.

But most carers do not realize that there is another person that also needs a care plan. They, themselves. You.

At first, you might question the need for a care plan for yourself - after all you are the carer, why do you need a care plan for yourself?

There are a number of reasons.

1. It is admirable that you put your loved one before yourself in all things but unless you look after yourself, you will not be there to look after them. Simple.

2. The caring role generally is a degenerative one, in that the amount of care you are required to provide tends to increase - at your expense! As the demands of your loved one increases the demands on your time and your inner strength are also going to increase. Where will the extra time come from? From your own 'free' time.

3. Initially you will balance all of your commitments - family, friends, recreation, exercise, interests, caring. But as time goes by, you will be at great risk of becoming more isolated; more exhausted; more burnt out. Friends will drop off, your world will contract and you will end up defining your life, your very existence as 'Carer'. You will abandon everything in your life that does not directly support that role.

4. One day your caring role will end. You might not like to think about that now but now is the best time. At the end of your caring role what exactly will be left if your only self image is one of Carer?

A care plan for yourself can help to mitigate some of these problems. It can take into account the changes that will ultimately occur while ensuring that you retain at least some small piece of your new reality for yourself. (That's actually what StayingMe is all about).

And creating a care plan for yourself is not selfish. Quite apart from the fact that by looking after yourself you will be in a much better position to look after your loved one, it is also something that you deserve. Yes, you deserve to have a little life for yourself too.

Stay tuned for more on your care plan - there's much more to come...

Friday, April 15, 2011

Some Good News

Finally justice has prevailed in the case of Mary Pyrczak.

Naturally, the press headlines are clear about the case but fortunately, and quite out of keeping with our normal run of the mill justice system, Justice Paul Coghlan has got it right.

Carers have it tough and in many cases they can be the victims of life-long manipulation and control and, yes, training, by those that they end up caring for.

It is not as simple as saying 'they should have done the right thing' because after a lifetime in a relationship that bonds far tighter and more restrictive than even marriage, the 'right thing' can be impossible.

Naturally, the mother should not have been left to die on the floor.
Naturally, she should not have been 'maggot infested'.

But things are rarely that simple.

Of all those surveyed recently, Carers have the lowest self-esteem, the highest levels of stress and the worst health. Many are chronically depressed, almost all are isolated.

And in 2003 there were 2.7 million carers but less than 300,000 received Centrelink benefits which means the rest (2.4 million!) were doing it the hard way.

So when these isolated, depressed and physically and emotionally exhausted people do not respond like you or I do, they do not need jail. They need support.

Who works 7 days a week? Carers do.
Who are on call 24 hours a day? Carers are.
Every one get's annual leave of course. Except that Carers don't.
Most people get long service leave. Except that Carers don't.
Definitely everyone has Public Holidays. CARERS DON'T.

Carer's don't even have superannuation.

In this one case, justice has prevailed.

For another carer, Agnieszka Miller, justice has been denied. As has compassion. As has understanding.

Saturday, February 19, 2011

Transference. A note to those who Care for Carers.

Loosely speaking, transference is where we redirect feelings from one person to another. There are a number of types of transference and it is a phenomenon associated with many different types of people in many different situations.

For those who care for carers it is a not uncommon experience.

When your wife or your husband or your friend is a carer, they are under extremes of pressure and responsibility. The role of carer often leaves very little time for families and usually no time for the carer themselves.

When the carer you care for seems to find the things that you do - or don't do - irritating, then this may be a case of transference. When they are frustrated and 'take it out on you' then this is transference. Like the proverbial man who comes home from work and kicks the dog, they are demonstrating transference.

In many cases the carer must be continuously and unconditionally on guard around those that they are caring for. They work hard, not only to ensure the safety and general good health of others, but also to manage their emotional and psychological needs.

A carer for someone with dementia, for example, is not able to chastise the sufferer for behviours which irritate. Compulsive behaviours, such as twiddling the thumbs, can be highly irritating to someone but there is rarely the opportunity to express that irritation. Because of this it is frequently just supressed. The next time someone else twiddles their thumbs, however, it is a different story.

Take the following example:

Jane cares for her mother who has dementia. Jane works hard to keep her mother at home and spends considerable time looking after her. When Jane goes home to her own house, her husband finds that she is overly critical, impatient or intolerant. He feels aggrieved by this and things escalate into a family argument.

In this case, we can see transference at work. Quite apart from the sheer volume of work required to support her mother and the associated physical exhaustion, there is also a significant emotional counterpart. Jane 'uses up' her patience and tolerance where it is most necessary - the care of her mother. By the time she gets home she is unable to keep it up. The only person who Jane can safely express herself to is her husband.

Her husband, however, does not realize that this is really a transference of feeling from Jane's mother to him. He just feels that Jane is being too critical and intolerant and not thinking about anyone else but herself. Ironically, it is the fact that she is thinking of others and not herself that is causing the problem.

But then her husband stumbles across a short article about transference. He realizes that her criticisms to him are not personal - they are not really about him, they are part of her unconscious strategy to cope with the caring situation with her mother. He understands better that she is under stress and that he is really the only person that she can 'let off steam' to.

By understanding behaviours which are essentially transference, we can better support carers - both in their role as carer and in their role as themselves.

So the next time you receive, as my old gran used to say, the sharp side of someone's tongue - take a deep breath, think about the idea of transference, and be the rock that they need to lean on.

Saturday, February 12, 2011


The site has been a little quiet lately. StayingMe is all about caring and because we are carers, we feel that we have much to offer to help those who care for others.

As many carers know, life is often a roller-coaster ride with many ups and downs that span all of the different aspects of being a carer. Our particular ride over the last few weeks has been related to the health of one of those that we care for, and which actually highlights an all too frequent problem that you might expect to encounter in your duties as a carer of someone with dementia.

It is the use of dementia by others as a term of convenience.

Let me explain.

A patient has a particular type of dementia which causes certain personality issues. We'll give it a name - Frontal Lobe Dementia. This patient also has a number of mechanical control symptoms related to a stroke.

Because the patient is known to have dementia, it is not uncommon to find all of their symptoms lumped into the dementia basket. For example, if they cannot speak then it is because of the dementia. If they cannot swallow then it is because of the dementia. if they grasp at unseen visions in the air then it is because of dementia.

Bulk allocation of symptoms like this might not seem too problematic, if for example someone is in hospital with a broken hip. But when the patients chances of recovery are involved then it can be quite serious.

For example, an inability to swallow due to dementia is almost certainly not going to improve because dementia is a progressive disease. On the other hand, if the inability to swallow is due to a stroke, then there is a chance for improvement - albeit a small one.

There are other problems that can arise also.

When someone has been diagnosed with dementia, any unusual or unexpected behaviors are automatically attributed to dementia. If someone is known to have dementia, for example, it is all too easy for those who have little real understanding of that person's particular affliction to distinguish between a legitimate behavior and one that occurs as a result of the dementia.

For example, in an aged care facility, a resident might insist that they should be going somewhere on a particular day but staff, knowing only that she has some form of dementia, ignore it. The reality might be that a pickup was scheduled but something critical has delayed it.

As carers we tend to know those we care for and are often able to distinguish physical symptoms and behaviors in terms of their originating causes. We know when someone is exhibiting signs of dementia versus indications of some other problem, illness or concern.

But most of society does not know. Doctors, nurses, personal care workers, shop-keepers - they can only rely on us to present them with a clearer view. And there lies the problem. Dementia is a term of convenience to many of them and our views - our experience - is often ascribed to 'denial' or 'optimism'.

Those in the best position to understand are most often treated, if not with contempt, then at least as over emotional loved ones who are blind to the 'truth' that others (with no experience of or history with the person involved) can 'see'.

Dementia is to them a convenient label that covers almost anything they can imagine.