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.

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.

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....

The christmas caper

I’m just indulging myself here... I need vent, again.

I had a lovely christmas camping with some of my in-laws. Then on boxing day went to stay with my parents for a few days. I came home frazzled, stressed, frustrated, wound up, and undone all the good fun that I had over the previous few days.

The big thing was the "genetic testing results". I asked mum if she'd got her results back and she said yes, sounds like it was a few weeks ago, and she said something along the lines of "you don't need to worry, if anyones going to "catch it" (alzheimers), it'll be her brothers, not me and my sister". Which obviously makes no sense. I know that if it is proven to be genetic, that I have 50% chance as do her brothers). 

So I asked dad. He said "results were inconclusive", but couldn't give me anymore information than that, and told me not to worry, it's not worth worrying about". So I asked if I could read the results, which, of course, he couldn't find. It really upset me. The only reason she had the genetic testing, was for "our benefit". It can't help her, she has alzheimers, but it can shed some light for her children, and her brothers, and perhaps her grandchildren. I don't want to know if I have the specific genes, but if her results are "not genetic" it will make a huge difference to my chances, and my childrens chances. Therefore it would ease the stress on my mind in relation to me and my children.

So, they got the results, and didn't think to ring me, or post them to me so I could read. I was very clear about wanting to be involved. I took mum to the geneticist appointment, because I had questions. I understood the process, and the dr talked to me about possible outcomes, so I was the one in the loop, but they've completely ignored me when the results came back, which may well be the best possible results we could have got. Essentially what dad is trying to say is that it is not genetic. Which should be a load off, but my dad is known for twisting the story, and lying and making things up, so I can't ease my mind with the knowledge that it is not genetic, until I read the paperwork. What he says, has to be taken with a grain of salt. And especially on a subject matter which he knows nothing about. He has been proven to just make things up and get the chinese whispers tangled into all sorts of mess.

So, I will ring the hospital and try and get another copy of the results sent out, but I'm sure I'll be met with a brick wall, because that geneticist has now changed jobs. I'm so angry and upset. Because she had this testing for our benefit, and failed to let us, their children know the news (and if it's good news, that it is not genetic, it would certainly ease my mind as well as the rest of the family), but we're just left hanging. I'm really upset by it. This action shows their complete lack of care for anyone but themselves. Results don't affect her, so just stuff them in a drawer and lose them. Those results impact the rest of the family in a huge way, but don't bother to tell us the results.

Then mum tells me that she had a pap smear, and there are problems, so she has to have more regular pap smears. I said to her, "so if you were to get cervical cancer, would you treat it?" And she said "yes, you have to don't you?" This is someone who had been hounding me and her best friend, to organise euthanasia in the recent past since being diagnosed with alzheimers and then later, parkinsons. For someone who was so, totally pro-euthanasia, all her life, to then bother getting pap smears after these diagnoses. It doesn't make sense. Why would you try and treat cancer, to then live a long tormented life with alzheimers and parkinsons? Of course, she may not have cancer at all. But, for me, pap smears would be off the list. Getting cancer would probably be the silver lining, the easy out so she doesn't have to be dragged kicking and screaming through the next demented, tortured few decades.

It may sound harsh, but my mum has put some fairly unreasonable expectations on me in regard to euthenansia. My dad won't even speak about it, so she's dumped those responsibilities onto me. I'm the one expected to somehow ease her suffering when the time comes, even though she knows that I would have to battle my dad to the death for that to happen, aside from the legal implications, and the fact that she's signed over all the responsibilities to him, I'm still expected to try and "sort it out" when the time comes.

And then, my dear sister, who lives overseas, doesn't even bother to email, sms, facebook, or ring me for christmas. No, that's fine, don't worry about me, i'm fine over here dealing with our parents and all their issues, you relax over there and don't worry about me. Have a merry christmas. I can tell you, I'm not going to take the higher ground on that one. She's now had 2 years free from all this stress through the testing, the breakdowns, the lack of diagnosis, the lack of answers, the depression, diagnosis, then the next diagnosis. I'm far too busy with my mess of a life than to bother trying to reach out to her. She doesn't send her only sister, or her only neices a birthday card or a christmas card. No phone call, nothing. Selfish doesn't even begin to describe.

Now, I have to try and re-group, get past it and not just walk away from my family which is what I truly want to do right now. And the knowledge that this is only the beginning, that this could and probably will, carry on and continue to deteriorate for decades is torture for me.

Wa wa wa, poor me, i know, but I have to let off steam somewhere.

Sometimes, death is torture

I was having a conversation about death yesterday.  My step grandfather in law is back in hospital with a chest infection.  He's 89 now and has been going down hill for the past year or so.  He is pretty much alone in this world, only has a couple of people in his life who bother to care or visit.  And the process of him dying alone predominantly seems like torture.

His wife has alzheimers and is in a nursing home far away from him, she is 96 this year.  He doesn't want to go into a home, and wants to stay at his unit, but refuses all offers of help coming into his unit. S o he's on his own most of the time.  I wonder if him having a pace maker put in a few years ago was a big mistake.  His heart is almost ready to give up, he's always out of breath, no energy, no will to live.  It's so sad, and must be torture for him sitting at home by himself with few visitors, thinking about the inevitable.  He gets to a point of accepting that it's nearly his time for death.  But then when anything happens, he calls the ambulance, goes to hospital, perks back up, for then, it all to happen again a few months later.

He is worn out, tired, and no longer wants to really be here.  If he wasn't alone, he may feel differently, but the way he has lived his life has dictated why he is now alone.  I think he was always a fairly self centred person.  He is nice enough, but he is an academic, he was busy writing books, and changing the world.  He wasn't interested in the non-academic and just humoured us, kept up appearances come christmas, birthdays, weddings, funerals and christenings, but little more.  So he is alone.  He wasn't interested in making friends with neighbours much, he wanted to rub shoulders with academia.  So, as smart as he is/was, he's virtually all alone.  He is also half deaf, which in itself is isolating.

He has had such a tortured life when I come to think of it.  He was an academic, then became a catholic priest, struggled with that, eventually gave up on religion for the most part which must have been painful and difficult for him.  He never had kids, because the best part of his life was given to the priesthood.  Alone, alone, alone.

I hope, when my time comes, I'm not alone.  That would be the worst thing for me, to be left alone for my final years, and then have those years drag on and on.  Teasing me with death and recovery over and over again.