Who Cares?

The Courier Mail (Wednesday December 15th) front page covers the story with graphic photograph of the 70 year old father, and the 36 year old Downs syndrome daughter, and his search for full time appropriate care for his daughter who cannot manage alone.  His wife, who died in September was her carer, but now it is left to this 70 year old man, who knows that he cannot continue for ever.

There is a huge shortage of housing for ageing people, and especially those with a disability.  There are over 14,000 on a waiting list in Queensland alone, with little hope of receiving the appropriate accommodation and care for them.

It appears the government is not doing enough about it - and the not-for-profit organisations are lagging, in part because it is a high cost service.  As well, there are few carers available - a great shortage of them.

Sad but true.  When will our governments and spend more money on such things rather than sports and casinos??

Exploitation of Elderly

Sadly it is something that has been going on for years - somehow an uncrupulous son or daughter, (or other family member) has the power (perhaps due to an power of attourney) to take control of their parent/s money and use it for their own ends.

The Sunday Mail (November 28th, 2010) reports on this issue in a piece which highlights the problem.  In our state we have some legislation to protect elderly people, but if the family moves them interstate, they have no such protection - a case for their being a national law on this issue rather than just a state issue.  How big an issue is it?  Who knows.  But it is complex.  My own family situation is difficult - Dad, who is distressed and I believe dementing has control over Mum's things, and he's just giving everything away.  Money?  Who knows what is going on there.  Can I do anything about it?  No, he won't let me help him.  Maybe he thinks I want to take his money, I don't know. 

It is a complex problem, that's for sure.

Sunday Mail article here.

Time

They say time is a healer - but it will take me a while to heal and come to terms with the ageing of my parents.  OK, you say, we must all get used to this, and ageing is something most of us will have to face. Those of us challenged by watching their relatives decline (be it ageing or illness) fight to find some solution to make life better for them.  We hate watching someone in physical pain, or mental pain.  Which is worse?

I spent just over four days in Adelaide, and for the first time ever, there was just me and my father in the unit that he and Mum have called home for over 20 years.  I was his guest, and he enjoyed it.  Though there were some minor things that I did for him, he enjoyed doing things for me.  Getting meals was his domain.  We did argue as I wanted to do things for him - isn't that what a big daughter should do for her ageing father?  But then he would have nothing to do, and he has found it difficult to live on his own, WITH NOTHING TO DO.  He does have someone come in weekly to do housework, and he does go out occasionally for meal, but other than that lives for himself, and the regular visits to my mother who lives next door in an aged care facility.

I asked about washing the curtains - on a glance they looked gray and dusty, but he raised his voice and angrily told me that he had recently paid to have them all professionally.  Recently?  The layers of dust and cobwebs in some rooms indicated otherwise, but any attempts by me to do anything resulted in aggravating him.  Not something I wanted to do.

We did eat out a couple of times, but he preferred to fix simple meals in the kitchen, and best I could do was wash and/or dry the dishes.

We tried to discuss some things but apart from relating tales of day gone by, he was reluctant to let me help with anything.  He did suggest that he was getting closer to considering an aged care facility - but not yet, he said.  Again, I had to let him speak about these things when he was comfortable to do so - any questioning on my behalf resulted in upsetting him.

I visited my mother every day - sometimes up to three times.  I'd tell her I was passing by, and managed to come and go without distressing her.  My sister is constantly distressed as each time my mother begs to return home.  She has cooking to do.  She has shopping to do.  And so on, and my sister does not know how to deal with it.

My sister says "my mother should not be in a place like this." - but when questioned she is not able to define where our mother should be.  In something like a five star hotel?  My sister's anger with me is almost palpable - as if I should have some solution to the problem.  

I have thought of going to Adelaide to live - and my few days in Adelaide were in some ways a test to see what it would be like.  Apart from being just too cold for me, there are other issues.

Could I live with my father?  Not likely.  For short periods it is OK - but hearing the same story over and over and over again would hasten the dementia that I consider I will have to face one day.  It sends me crazy.  Each time I go to Adelaide (it has been four times this year), I get the same tour of Brighton as if I've never been there before, the same spiel.  "Yes, Dad, I know.  I've seen it before."  

Having him control me - not likely.  He has never allowed me to use his car - and if I go anywhere I must hire my own car (done that often, but it is expensive), or allow him to take me.  He sits in the car outside where I am and waits and waits.  How do I feel?

We all know we have to face the inevitable death of our loved ones - wondering if we will "go" before them.  Watching them decline is painful.  Why must this stage of their lives be so painful?

My daughter asked me today about living in Adelaide - I'd made the suggestion recently.  It is an option.  I thought of living with my father, and after the few days I knew that I could not do that, as well, now he is considering moving into an aged care facility.  I'd have to rent a place to live, or house sit -  but I have no car - and am unlikely to be able to get one there.  I just don't have the money to rent a place and get a car.

It is just so hard - living over 2000 kms from one's parents.  Hard to watch and care for them from such a long way away.

Another sad story

Yesterday, the bodies of two elderly ladies were found in their Gold Coast Unit.  It appears that the mother and daughter had died some time previously.  The mother 85 had died, earlier, and the daughter aged 65, had died some time after her mother.  They were migrants from Yugoslavia, who had made very good in Australia, but lack of support, culture differences perhaps, no family etc had meant that their declining years were lonely, and to think that they had been dead for some time - right in the midst of the busy Gold Coast is hard to beleive.

This event hightlights some dilemmas that old people face.  Especially those who have no one.  We know that there are good support services for people such as these, but either they did not know about them, or they chose not to take advantage of them.

We acknowledge that people often make their own choices.  Rightly or wrongly. 

In any case we feel guilt about events such as these. 

It appears that the ladies were quite reclusive and didn't even use any electricity, despite the fact that it was connected to the unit.  

Each times such an event occurs there are promises by well meaning people to keep an eye on older neighbours, especially those alone - but it is hard to know what to do. 

Read the story here.

Compass Program

On Sunday night (October 31st, 2010) the Compass program on the ABC dealt with an issue that I believe is worth watching, and considering.  I didn't find it as confronting as many people, because it is an issue that I believe should be discussed with family.

The brave doctor from I think Geelong Hospital in Victoria, discussed the End of Life, and how even when people are very elderly and unlikely to have any quality of life remaining, how we expect doctors to perform miracles and save the elderly.  

Families need to learn how to 'let go' and let the family member die with dignity.  It is something I will discuss with my family.  I am preparing a living will.  I want a quality of life at the end, and I will be accepting of some medical treatment to try and save me, but if I am over 80 years old, I do not want all the tubes and invasive treatments to prolong a life that may not have any quality.  

The video may only be available on the website for a short time. Click here 

A huge dilemma

This morning's Courier Mail tells an awful tale about an elderly lady who died in dreadful circumstances.  There's a link to the story below, but essentially an elderly Polish lady had wanted to live at home with her daughter, and it appears the daughter had challenges of her own (depression), and was unable to properly care for her mother.

I can imagine a lot of people can identify with this situation.  We are not conditioned to caring for an elderly parent, especially when they clearly need nursing care.  Even a devoted daughter with nursing experience will find it difficult to nurse their elderly relative, and manage a house and life in general.  We may WANT to care for our elderly loved ones, but it is not easy, especially if the elder person is not keen for any other intervention.

The sad story tells of the decline of the old lady, in the end dying a terrible death at home with bedsores, some with maggots in them.  The daughter has been found guilty to the "manslaughter" of her mother and sentenced to jail.  

I know nothing more than what I have read in the Courier Mail on line here, and I can only imagine the trauma the daughter endured, and I'm angry that she must spend time in jail.  The women were Polish with apparently no other family around, and the mother was quite domineering, so again I can only imagine what the daughter had to put up with.

Many people do not understand the support that is available to them and I know the anguish if the older person refuses to accept that help.  We had to trick my own mother into going into a nursing home (what elderly person WANTS to go into care???), with the support of relatives, but if there is no support, or no KNOWN support, what can a daughter/son do?

One of the great tragedies is that older people do not want to go into care, and families are often bullied by parents because of their desires to be with the family.  It is a tragedy and a dilemma for many families.

What is the answer?  I don't know.  However, family and friends should be supportive and caring of people facing these dilemma's and we should all educate ourselves and others to the support systems that are out there.

For governments I believe they need to make the support systems more accessible, and "user friendly".  Knowing what we have gone through with my parents I wonder how many people can cope. 

As the baby boomers reach old age we will have many more challenges in providing quality care - and other families will be traumatised.  

That the daughter must endure prison for "manslaughter" is unfair.  In the article there was no evidence of cruelty to her mother - and I know nothing of the court case, so know of no evidence to support that she deliberately set out to harm her mother.  I doubt she did.  It sounds like she was unable to cope with a domineering mother, and did her best.  Sadly she was in a position of having little choice.  If she'd sent her mother to a care facility against her wishes, she would have felt guilt and trauma as a result.  As it is now she has to suffer the guilt of having this "guilty of manslaughter" of her mother conviction.

Very sad story all round.

People who prepare for death live longer

I found this video very interesting and the message that "people who prepare for death live longer."

Recently a friend told me that she was not thinking about it - the idea of getting old or facing decline or death really bothered her, so I hope one day she pops in and watches this video.

I would imagine having made some of the decisions, it would free you from any worry.  We know stress (worry) takes a toll on our health.