Prolonging life, or holding death off?

What are your thoughts on this?

I ponder this alot, because my dad has a bit of a phobia about death, always has had the phobia. It's quite wierd for someone of his age. He won't discuss it, and changes the conversation or walks away whenever it becomes a topic. So I wonder what will happen when my mum reaches a certain point, where her quality of life is non-existant. Will he fear death so much that he will do any ridiculous thing to keep her alive rather than have to face her immortality?

I am of the belief (and this is what I would want for myself) that once you lose a certain quality of life and no longer appear to get much joy out of what's left of your life, that it's pointless doing surgeries, putting in pace makers, giving medications, resuscitating, things that are going to prolong life. Obviously this is all dependant on what the person in question thinks, and their religeous / moral beliefs are.

I wonder if i'll have to lay it on the line for my mum and try and fight for her right to die. I know she thinks like me, she's a nurse, she's worked in aged care for decades, she knows that she doesn't want the end to be dragged out over a period of years / decades. She's always said, "if i ever get like that, shoot me, decades before alzheimers was even in the picutre" for her.

I'd hate to have to fight with my dad over these decisions, and really I have no power, he is next of kin, he is her husband, but I feel obligated to allow her wishes to be taken into account.

It's such a scary thought that this issue could divide our whole family in the years to come. I broach the subject gently now, to test the waters, but when you are in the thick of it, is when the big cracks appear.

I have pleaded with my partner that if i ever get alzheimers, that he is never to do anything that will prolong my life, only pain relief or drugs to make me happy and comfortable for the now. I will never make him promise to keep me out of a nursing home, but i will make him promise that he won't hang on to me too tightly when the end is nigh. I will make him promise me to let me go when my time is up and to never force me to stick around for his own emotional needs.

Is that a light at the end of the tunnel I see?

Well, i know it's probably only a street light, that I will eventually pass, and continue into the darkness of the long long tunnel, but still, it's a little light.

I feel like I may well be getting there with my step grandfather inlaw. I may have found him a nursing home, after 18 months of banging my head against numerous brick walls. Fingers crossed it all works out. I found a place, close to my home, across the road from my Gym, it has vacancies. It is nice, the rooms are good. He can have a room with a bedroom, and a lounge and an ensuite, it opens up with a sliding door, onto a courtyard with a garden. It's small enough to not be hospital-esque.

It's only 15 minutes from my house, i go past there at least a few times a week. Ah, if this works out i'll be happy. It'll make my life a whole lot easier having him close so I don't have to waste a half a day each time I need to do things for him. I'll be able to invite him over for lunch without it being a 3 hour round trip. I'll be able to pop in on the way to or from the gym to run errands.

The only thing is, there are quite a few vacant rooms, which would lead me to believe that there is a problem with the place. But then I have a friend who's father inlaw is there, and they haven't seen any issues. I think the main issue is that it's on the corner of 2 busy main roads. Which, in my case, doesn't cause a problem as my step grandfather in-law is almost deaf, so the noise from the traffic won't bother him a bit. The rooms I'm looking at don't have windows facing the street, so it shouldn't be a problem. Probably more of a plus, because there are doctors, chemists, shops, post offices, optometrists, podiatrists, banks, etc. all within gopher distance from the nursing home.

I'm impressed at the size of the rooms, he'll be able to have his recliner, and his TV and his computer and printer and computer desk all in his little lounge room and he'll be able to tap away and continue writing his books to his hearts delight.

It's a tiny tiny potential victory for me in a massive massive marathon. I hope it works out. Please, I need a little win, I really have worked very hard for it.

The aged care paper trail, time to ramp up

On my soap box yet again!

Ok, so i'm on the aged care round about again, trying to get a place for my step grandfather inlaw (no dementia). He bought into a retirement village with a certain brand / chain of nursing homes over 25 years ago. He bought his flat for $120K and agreed that when he died or moved to a nursing home, that he would receive $80K back from the sale of his unit. Of course the unit is now worth probably $320K, and he was aware that he was paying for the privelage of them making a stack of cash on his property with the understanding that he would be looked after, and when the time came, he'd just go across the road to the lovely state of the art nursing home facility across the road.

So here are the letters i've been writing to management after trying and failing one way or another, for the past year and a half to obtain a nursing home spot for him.

I'm right on my soap box, and I'm not getting off until this man is being cared for. Not only do they make a ridiculous profit from the sale of his unit, he's paid over $40K in fortnightly maintenance costs, as well as covering the cost of his own renovations, water, electricity etc. So all they do is keep the front and communal gardens maintained essentially (the back yard is a tip, but nobody else can see that, so they don't care).

Letter 1

Nursing Home Management

Date

To whom it may concern,

I am writing in complaint regarding a step relative of mine, XX. Me, and my partner XX have enduring power of attorney. He has been living in XX (your) retirement units at (suburb) for many years. He is 89 and suffering from many medical and age related complaints. He requires nursing home care as a priority.

My complaint is that when he and his wife bought into the retirement units many years ago, they were very clearly sold on the fact that when they would need nursing home care, that they would seamlessly be able to move into the XX (your) nursing home system. This gave them the peace of mind that they would be looked after when they could no longer look after themselves. They paid a premium to move into what they thought were some of the best, most modern retirement units and nursing homes available at the time.

Now it is time for XX to move into residential care, it seems to be an endless round-about to try and get him into care. He was on a waiting list for about 9 months at one stage, and then he decided that he would just stay at home, as we were getting nowhere on the waiting list and his health picked up with regular meals being delivered, and regular cleaning provided by the council.

But now, he has no choice, he is very depressed, fearful and lonely all the time, and can no longer go on living at home. He is currently in respite, and will be moving to respite at another facility in hope that he will have a nursing home place either at XX (Your) Nursing Home A or XX (Your) Nursing Home B.

We do not want to send him back home. In the last couple of months at home, he was having panic attacks regularly, and each time (I think 5 times within 2 months) pressed his button to call an ambulance.

He has been seen by the mental health team, and the staff at XX (your) Nursing Home have been a very good support at respite. But the same problem still remains. He can’t seem to get into a nursing home permanently.

I really don’t know where to turn, and I would like to see this situation remedied as a matter of urgency. Each time he has called the ambulance and ended up in Hospital, he is promptly sent back home with little or no real treatment.

His medical problems are as follows:

Legionairres disease (causing regular, long, re-curring chest infections, he has had a permanent chest infection for the last year or so) *** quite likely caused by the air conditioning at this residential unit through this same company, which is a whole other legal can of worms...
hearing impaired (can’t use the phone)
depression
anxiety
bi-polar
drop foot and has impaired mobility
heart problems (shortness of breath, lethargy, pace maker)
urinary incontinence

I do believe that XX (you) have a duty of care to find XX a suitable bed as a matter of urgency. XX (you) will make a substantial profit from the sale of his unit which has sky rocketed in value since he purchased it all those years ago. He will not make any of that profit, and was promised a level of care that simply has not been followed up on. He has no blood family left. Myself and My mother in law do our best to offer him support because he has nobody else, but his current needs are well beyond our resources at this point.

We both have other family members who also require our care and support, so we are relying on XX (you) to follow through with their original promises from all those years ago, of providing quality, ongoing care into his old age.

I look forward to hearing your response.

Regards,
XX (Me)

Response 

This was followed by a very unsatisfactory letter from the powers to be telling me that my step grandfather inlaw still needs further assessments in order to be eligible for permanent care. Which I have checked, double checked, triple checked because I know how hopeless this system is. I have been assured many times that yes, he is on the waiting list, he is a priority, and that there is no further paperwork or assessments to be done.

He also advised me that my step grandfather in law has been offered and declined multiple places in the past (which he has actually only declined one place at a location that he didn’t sign up for on their waiting list).

And that although they made the promises all those years ago it’s unfortunate that the places just aren’t available at the moment.

In other words "too bad, so sad, i don't really care, i'm going to make a fortune out of this poor sucker".

Letter 2

Nursing Home Management

Date (a week or so later)

To XX,

I am somewhat confused by your letter. You say that if XX requires permanent care, he will require further assessment. We have had regular meetings with XX (your staff) and she assures us each time we ask, that he is definitely on the waiting list and that we have no further action to take.

I have been in regular contact with XX at Domicilary care, and with the ACAT team asking if I need to do anything further, and keep being told that he has ACAT approval for low care respite and for permanent care.

What exactly needs to be done for him to be eligible for permanent care? I have made countless phone calls to all these agencies over the last 2 years trying to get somewhere, and still I have no clear idea of how I am to successfully get him into a nursing home.

As far as myself and my mother inlaw are aware, he was only ever offered one spot at XX Location, which he was not on the list for, and that I declined on his behalf because I knew that he wouldn’t want to move to XX Location, where he has no friends or family located. That would have been a year or so ago when his health was much better.

I am now at the point where I feel it necessary to enlist the support of a broker to get him a nursing home position, and not confined to the XX (your) system, because he simply can’t go back home. I expect that XX (you), in a goodwill gesture will pay for the costs of this broker, whatever they shall be, because after all, XX (you) have been receiving regular fortnightly money from XX and XX (his wife) for over 25 years now. Also, it is XX (you) who will be making the considerable profit from the sale of this property when it is eventually sold.

I would prefer not to have to go to the media to get some attention on this issue, but I really am not sure how else to proceed and get action. He would never have signed a contract like this, if he didn’t think he would be looked after. He very easily could have bought a lovely, similar sized unit privately and made a considerable profit over the past 25 years, that he would be able to afford the bond into the most exclusive care facilities in this city with the profit from the sale of a private home.

Currently, his respite is costing him considerably more than his pension, it is not something that is viable for much longer.

Perhaps XX (you) will consider sharing in the profit of the sale of his home in order to fund his care costs and reneging on the original contract, which is quite obviously profiteering from vulnerable people who are just trying to protect themselves for their future old age. Surely there is a profit of at least $150000 there which can be used to fund a private nurse for him to stay at home, or fund the expensive deposits required for the lovely private aged care facilities available.

Regards,
XX (Me)

Response

I got a rapid reply phone call on this one. And was told that unfortunately that contract had been made a very long time ago, and that they didn't foresee the places being unavailable, but unfortunately, that there were no places available currently, over and over again. This, he kept on repeating to my every response, over and over.

He kept cutting me off and telling me that there are just no places available and that he wasn't around when the deal was made and that it is very unfortunate. So I made it very clear that I'm sure that if we were to buy into this care company today, that we would be sold the similar thing (probably with a hundred more pages of terms and conditions of course) but it would still be the same, you'd only get your 80 odd percent back on the over inflated price of the property, which of course is a terrible real estate investment, and that the presumption would be that you'd be cared for when the time comes. ideally across the road, or in the same or near suburbs. You pay the money for a bad investment, because you are ensuring yourself for your future care needs. 

I made it very clear to him and kept stopping him cutting me off, that I was aware that he has paid over $40K in maintenance costs, and that they had never had to do any work to care for his wife, because their facility wasn't suitable for a dementia unit, so we (family) have had to do all the ground work in finding her suitable accommodation and care. 

I made it very clear that he could have easily made $200K on a private investment if he hadn't chosen to try and pay his way in for ongoing quality care. And now that all of their money is tied up with his organisation and they are not getting any care from the organisation (he is in respite currently at another brand / chain of nursing homes). 

No mention of help forthcoming, no mention of any financial aid forthcoming to try and help us resolve the current problem at hand. But by the sounds, something may happen before his respite position is up. I told him that my step grandfather inlaw has been so committed to this care company for decades. Both his brother and sister lived and died with this care company, and he would have never considered using another care home, because they are all he has ever known. 

So fingers crossed, me being very bossy, pig headed, and not backing down (usually i'm not one to fire up that much and confront strangers with such gusto), they will endeavour to offer him a suitable spot before his respite is up. 

It is abhorrent the way these people are treated and have their money fleeced from them, and then they are just left to wither and die. This man knew he had no children, no blood relatives. He knew he had to pay dearly to be cared for, and thought he had paid enough to get himself looked after. He signed a contract with one of the better nursing home systems in our city with a good reputation, and still, no help is forth coming unless he is prepared to pay more than his whole life savings. Currently he is whittling down the savings of him and his wife who is tucked safely away in a secure dementia unit, likely never to come out, unless it's a hospital vist. So, now, he is forced to be spending the money that should be partly reserved for her care and comfort needs. 

Oooh, the blood simmers away....