Wednesday 11 December 2013

Planning for christmas this year

This year is different from the past years. We've decided to sacrifice Christmas in order to not get stressed out about how it never works the way we plan it. In the previous few years we've spent countless agonising hours trying to plan it to get it to work the way we want. Each time, it didn't work the way we want and we spent hours and hours venting after a Christmas that didn't meet our expectations.

I've changed, this year, we're doing "whatever" and have decided to sacrifice Christmas and not worry so much when it doesn't go to plan, because we know it wont. We've decided to go to my parents place (a couple of hours driving) and we offered the option of going out to lunch or staying home. They've chosen to stay home, because Mum is increasingly uncomfortable with "making a mess of herself" in public. So, we'll take some prawns, Dad will whack on a bit of roast meat and see what happens.

The plan is, that we, for the first time since my children were born (7 christmas'), will have Christmas morning home alone as the nuclear family, to open the presents, have breakfast, then drive to my parents, have lunch, then leave when we've had enough. It's becoming clear that we cause stress and anxiety when we stay at their house, so we will just leave, so they can relax after lunch without the stress of visitors staying.

If lunch is a disaster, it's ok, we have prawns, and that will do. Then on the way home, if it's hot, we'll go to the beach and have a swim. We will be going away for a week after Christmas this year, so we'll celebrate then if Christmas doesn't work out.

Fingers crossed, we can execute our goal of not stressing out about a disastrous Christmas.

Tuesday 19 November 2013

Broken wrist

I got a phone call from mum today. Apparently she has broken her wrist. She had a fall yesterday morning out near the barbecue area (nice even flat pavers). They have put a back slab on the arm and she'll see the ortho on Friday to see if she needs a full cast.

She must have had about half a dozen falls this year at least. Things are obviously getting harder and harder for her to do, she still tries to do some things, but they live on a large 2 acre block which is in a hilly area, lots of uneven ground, steps, rocks, etc. I doubt she even goes off the paved and concreted areas these days mostly, but still manages to fall very regularly. She's becoming a prisioner in her own home. She can't go up to the clothes line (up a set of concrete steps, surrounded by rock walls). She really doesn't drive all that much anymore, and the shops are far too far away, and she's on a massive hill, so walking or even riding a mobility scooter is not an option as the hill is really steep.

Dad says they won't be moving until it's time for her to move into a nursing home because she just is so uncomfortable in unfamiliar surroundings, it would be too much for her. But she's stuck there, she can't do anything but sit in the house. I can't help but thinking that if they lived in the town, she could at least get a mobility scooter and get around safely a bit. If they moved into a smaller flat with all the disability aids she needs to help her around the house.

But, I have no say on the matter, so that is that.

Thursday 14 November 2013

Goodbye to a girl so young

Today I went to a funeral for a 9 year old girl. Her sister goes to school with my oldest daughter. She was very sick for 5 years, and it was anticipated that she would die, but was still a shock when it happened. I am lost for words really. It was so sad to see the family have to cope with their oldest daughter and her passing after 5 hard years of her becoming more and more disabled with each passing year. She out lived her life expectancy, and I'm sure it is something of a relief that she is now freed from being trapped inside her broken little body.

I feel for the family, although they will probably sleep better at night now that they don't have to sleep with one eye open, they don't have to go in each morning wondering if she'll be dead or alive, but they'll still have guilt when they have a good night sleep, and they'll be able to enjoy doing all the things that they couldn't do with a wheelchair bound child, but still the guilt follows each time you enjoy something when part of your family is missing.

Rest in peace little angel, I hope heaven is better for you than the earth was.

Wednesday 9 October 2013

A 3 night visit

We went and stayed at Mum and Dad's for 3 nights this week.  She's having a rough trot of things at the moment.  She's changed her antidepressants 3 times over the last couple of months, and it's been, disastrous to say the least.  She has had really bad side effects and we’re crossing our fingers that this change will be the one to stabilise her again.  She has only been on it for a week and a half, and is still having regular panic attacks and a lot of agitation. Apparently it’ll take up to 8 weeks to really have an affect.

I have noticed so many things recently that have been getting steadily and quite rapidly worse. The other night at dinner she was trying to cut her meatballs, and she was using a spoon instead of a fork to try and keep the meatball still.  She said to herself “how do I normally do this?”  She really struggles with eating now.  I get the impression when they are alone, Dad probably cuts up her food for her, but when anyone else is around, she doesn’t want to lose face, and tries to do it herself.  She does struggle to cut the food up, and takes a lot longer to eat.

Compare that to a year ago, it’s a world away.  She is also getting quite aggressive with Dad.  Very demanding of his time and attention.  Expects him to do everything for her without any manners or grace, she gets short at him when he doesn’t just know what she wants.

She had a fall while I was there, and seemed to forget that I was inside. I thought it was the kids making stupid noises (which they tend to do constantly), and went out to find her outside on the ground, crying uncontrollably.  She wouldn’t let me help her up, and only wanted Dad (who was at a neighbours house).  She was convinced she had broken her knee (even though she was walking on it).  The following morning, she wanted to go to the hospital because of the pain, convinced it was broken.  She said she was trying to yell out to the neighbour who was mowing his lawn, but couldn't hear her.  But me and the kids were both there.

I’ve noticed that she doesn’t read much anymore.  Normally when I visit there is an arrangement of current magazines to read, this time, no magazines.  She mentioned she wanted to sit down and read the paper, and when I walked past again, she was looking at the supermarket catalogue.

She got very agitated when Dad went over the neighbour’s house, and she couldn’t find the dogs bowl to feed the dog. Really angry and really aggressive when he didn’t jump to her assistance to clear the table and put the dishes in the dishwasher. They ended up arguing over it because he was having a drink and a chat after dinner.
It is quite clear that Dad does most things for her now, and the stress and strain must be getting to him. Not good!
 
I got the feeling that us being there really disturbed her routine, and that we were a pest. She got quite short with the kids quite a number of times, which isn’t usually her way with them. It was quite obvious that they annoyed her and aggravated her with their constant noise and mess.  The time is coming where we will not be staying at their house, it's just too much on her.  

Wednesday 18 September 2013

Holidays

It seems that dad has realised that mum's alzheimers is getting worse, probably a lot faster than he expected. He is keen to take mum on a holiday, and seems to want my family to come along (likely for a bit of moral support).  He suggested Asia, which I then had to tell him would likely be unsuitable for mum, with squat toilets, and what not.  When I went to Asia, some years ago, it was an adventure holiday, diving, sleeping in little huts on the side of a hill, sleeping on mats on the floor of some kind of houseboat. It certainly was no holiday for a person with Alzheimers and Parkinsons. I know, that you can go to a 5 star hotel and have a room with no stairs and lounge by the pool all day, but I don't really want to spend that much money to stay in a hotel for a week.

Next suggestion was a cruise. I'm not sure if this is going to happen or not. I'm not sure that it should happen. Mum is prone to anxiety attacks and gets quite agitated when out of her comfort zone. She has panic attacks on planes, so what of a cruise?

Who knows, but it sounds like a holiday that I'll end up needing a holiday when I get home from.  I understand he wants to do things with her before she loses the capacity to do so, but I also wonder if she'll actually enjoy it at all or if she will be uncomfortable stuck in a little box type room, and then feeling judged by the prying eyes of others (we would be going in school holiday time, so it would be busy).  She has tremors, yes, people stare and watch, it is uncomfortable.

I'm not sure I want to go on this holiday. Perhaps I can convince them to go to a caravan park somewhere where you can have the privacy of your own deck chair.

Friday 16 August 2013

Moving right along

I went and stayed with my parents recently for a couple of nights with the family.  It went ok on the whole, but each time I spend time with mum, I notice another little thing or two that means her alzheimer's is moving along, slowly but surely.

While I was there mum didn't do anything for the kids, which is unlike her.  A snack or a meal usually.  This time she didn't make them toast in the morning, didn't warm up their milk for them, she didn't make their lunch and she didn't make their dinner.  I think through the whole visit, she got them a plastic cup and filled it with water.  That is new, she is normally trying to make them some kind of snack.

She was exhausted, absolutely shattered by the end of the 2 days, even though she slept late and didn't have to do any meal preparation.  I now realise that although she still thinks it's a possibility, there is no possibility that I will be leaving my kids overnight at their house without me or their father.  It's just become too hard for her.  I can't rely on  Dad to not just pop down the road or across town to see someone for 10 minutes (which inevitably turns into a couple of hours).

We went out to dinner one night, and I had to go back into the restaurant to get a forgotten jacket.  When I came out, Dad had loaded my 4 year old into the back of his car, without a car seat.  I quickly nipped that in the bud and told him that the law is, that they have to be in a car seat to 8 years old, and promptly put her back in my car with the car seat.  If this is what he thinks is appropriate, it concretes my decision to not leave my children with them anymore.  It's not worth it, my car was there, with a perfectly good child restraint, so why not just use it.  We'd never forgive ourselves if this 4 year old was to end up in a wheelchair because of our laziness about car restraints.

Also, she was trying to read a short basic recipe from the back of a packet of sauce for meatballs, which she has made dozens and dozens of times, and although she was reading it ok, the words were coming out her mouth correctly, but the numbers just stumped her, she would read it, and re-read it, and re-read it again until she finally gave up and said "I can't even read anymore".  She can read it, she just can't comprehend and understand what she is reading.

We did go shopping together, and managed to pick out a couple of presents for my 4 year olds 5th birthday coming up soon.  So, after last christmas and the interesting present choices, at least I'm safe in the knowledge that my daughter will receive a winning present from her Nanna this year.  I am aware that this could well be the last year that happens.  I guess we'll see.


Friday 26 July 2013

Driving licence

Mum has been on a restricted licence since getting her Alzheimer's diagnosis. She's only allowed to drive to within 5km of home.  Initially, I thought this was quite a harsh thing to do, but after time, I realise it is the right thing to do.  She no longer has the confidence to drive long distances.  Or deal with some of the responsibilities of driving (like being involved in accidents and the stress and confusion it causes).

I got a phone call recently from my mother telling me that she'd re-sat her driving test and they'll be giving her full licence back.  Oh the joy and logic of the "system".  So, it would make "so much sense" that someone who hasn't driven distances in over 2 years, someone who hasn't driven in the city in over 2 years, someone who has been diagnosed with early onset alzheimers, and parkinsons, who suffers from chronic fatigue, constant and chronic pain (feet, legs and back), and poor mobility would get their drivers licence back, after doing a couple of laps around the block, was deemed competent and fit to drive.  Even though, with all her health issues, you are going to give her licence back, to only have to take it away again probably within a couple of years anyway.  At which point, she won't be able to comprehend why her licence has been taken away, or even remember that it has been taken away.

Roll on the memories of decades gone by, of my grandfather storming off down to the local police station abusing them regularly, trying to convince them that there was nothing wrong with him, and that he needed his licence back.  It's a funny story to recall now, that he's gone, but I'm pretty sure it put my poor nanna under huge pressure, and enormous embarrassment that he was a regular feature at the local police station.

So after a bit of conversation, I find out that when she got the letter from the licencing people that she needed to get her certificate to drive signed and re-sit the driving test. Her normal GP is overseas, so she went to see the new GP in town (never met her before). So, in she goes to her 5, maybe 10 minute appointment and the new GP scans over her medical history, whatever happens to be in the system visible to her, and decides that mum is "fit to drive".

I contacted the licencing people who, agreed with me, but had no power to make any changes to the situation, as the Dr has signed her off as fit to drive.  The lovely lady at licencing said she'd hold off on sending the letter, so I got a chance to contact the GP to see if I could make them see sense.  I wrote and advised the GP that because of all of mums health problems, I think the right decision was made by mums regular GP, whom she had known over many years, who had been through the merry go round with mum through her knee replacements, her alzheimers diagnosis, the long drawn out process that it was, the parkinsons diagnosis, the pain, the depression, the fatigue, the menopause, the whole lot. I asked that she re-think her position and keep mum on a restricted licence.

I haven't heard anything, but I can tell you what, if she gets her full licence back, and ends up having an accident, I'll be knocking on that GP's door and reminding them about their actions.

I feel it is a massive flaw in the licencing laws in Australia.  You can go to a complete stranger GP and they can sign an elderly and sick person off as "fit to drive", no questions asked.  Obviously the GP's don't want to get to be known as "not signing the driving forms", it will deter people from going to that GP.  But, isn't it their duty of care to seriously question why someone was put on a restricted licence and perhaps to a bit of further investigation before signing off?

I had a similar sitation with someone else I have known who has some very serious and complex vision issues, and continues to be signed of as "fit to drive".  I certainly wouldn't get in a car with either of these people driving, so why would they continue to keep their licences.

Thursday 25 April 2013

Confusion creating chaos

I rang my mum's geriatric specialist after discussion about her treatment a few weeks ago. I told her that we weren't happy with the neuropsych we were seeing, and that we'd prefer to just see the geriatric specialist, because the neuro was not doing anything that she wasn't doing, and didn't show any particular interest. It was always a 5 minute appointment that acheived nothing. obviously, unless things change, it's unecessary to keep driving 4 hours to see this specialist. She (geriatric specialist) told me she'd cancel the neuropsych appointment. Mum has to travel 4 hour round trip to get to both the specialist and the nuero, and obviously they don't work on the same day, so it's always different days.

I had to work yesterday when the specialist appointment was. The first one I've missed since her diagnosis with this particular geriatric specialist. And they came back saying, that they have to come back and see the neuropsych on friday (another 4 hour trip). I'm confused, they seem to send the appointments in the mail, to mum, who has alzheimers, then when things get mixed up, they send a letter which dad never even sees. No wonder they muck up appointments. Why would you address these letters to an alzheimers patient rather than the carer? Or, does dad just palm them off to mum (with alzheimers)? Then when I call them to check up and clarify the appointments, they say "yes we made those appointments with your mum", "yes, but she has alzheimers, and is obviously easily confused, I just need to clarify".

My parents expected that they'd just stay at my place (as usual) except that I've already offered to babysit for my nephews, which would mean 8 people in my house, which is obviously not viable considering mums needs. I told them that they can't stay as I don't have enough beds, and had already committed to this babysitting. I told them that we can ring the neuropsych and cancel / re-schedule the appointment. No big issue, because she has no pressing need to see him at the moment anyway. That's obviously gone down like a tonne of bricks, and I think they are just going to drive down and back, after doing 4 trips to town this month.

I don't understand why they can't just take their own needs into consideration and stop just "doing what they are told" by medical professionals. Mum is at some appointment or another almost every week. It's past the point of ridiculous. Her medications are stable for parkinsons and alzheimers, there is nothing more they can do until things change. She has dentist, podiatrists, physio, neuropsych, geriatric specialist, asthma specialist, othopedic specialists, gp, pap smears, breast exams, on and on and on... it's past ridiculous. It's almost like they think they aren't allowed to decide on their own affairs, that they aren't allowed to just cancel or re-schedule. It's not viable to drive back and down 4 times in a month. And it's not necessary. I hope that if and when I have this many problems, that I have the foresight and strength to decide which things are necessary, and which ones are just an unnecessary time wasting exercise. I hope I have to strength to decide on when to refuse certain treatments or appointments or tests or specialists. My parents seem to think they don't have the right to refuse treatments.

It's usually fine, and I don't mind, but I've got plans, and I can't accommodate them always at a moments notice with free board with all the trimmings included.

Mum's response was "well, we could stay at our friend's house, they always said they have a spare bed, and they live just down the road from the specialist, but we hate asking all the time"... Mmmm, but you sure don't mind asking me everytime and just lobbing at short notice, never letting me know what time you'll be here, or if you are bringing your dog, letting your dog crap all over my lawn, leaving your mess and walking out the door when you're done. Obviously I've made it too easy for them to utilise me without notice, drinking all my coffee, using all my loo paper and then going home. Sorry, but this time, I have plans, this time you'll have to find your own way to the Dr. I hate to seems so rude, but just reschedule the damn appointment, it's not the end of the world.

Thursday 7 February 2013

What an incredibly unsatisfying day!

We moved my step grandfather inlaw into a nursing home today. After 2 years of torturously trying to get him to accept home help and him refusing. Multiple hospital admissions via ambulance, disastrous dealings with his retirement village company who ripped him off and failed to look after him and find him a nursing home position after all the money he plunged into their coffers.

So, after months of looking for a nursing home, I found one, close to me, that was nice. He gets there and says "oh, this is not what i expected". I think he expected a new version of where he has been living at his 3 bedroom retirement unit, complete with garage, back yard, front yard, kitchen, bathroom, laundry, dining room.

He immediately decided that he needed to bring more furniture and surround himself with his multiple hundreds of books. We'd set it up beautifully for him, we bought his computer desk and printer and computer, his large screen TV, his recliner, his wheelchair, his gopher, his walking frame, his clothes, his alarm clock and personal effects. But, no, he still wants to go home and measure up the book shelves.

We have 2 weeks to vacate his retirement village, and he had over 20 years of stuff there. The place is a bomb site. We've had furniture removed, curtains removed, there is boxes and things everywhere. The dining room is empty, the kitchen is empty and the rest of the house is piles of different things to go to different places.

If he returns home to "help us sort it out" he will have a complete break down. But doesn't seem to realise that we can't store all of his stuff in our sheds and that most of it except for the important stuff must be disposed of.

I'm not looking forward to the next 2 weeks. I hope if he goes back home, it's not when I'm there, because I don't have the time or the energy to pick up the pieces right now. I've got too much of everything else to do.

What a sense of doom that this is likely to happen to me again a few more times in my lifetime where I have to ship people off to nursing homes and dispose of their lifes collections.

I'm exhausted, and drained.

Thursday 31 January 2013


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.

Thursday 10 January 2013

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....