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.

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.

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.

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.