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.

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.

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.  

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.