New Year, new changes

This year, I've discovered that we, as a family have had to make some more changes. Christmas was a reasonable success, partly due to the fact that we discussed in great detail, and decided that we would lower our expectations and demands, and that anything beyond a complete disaster, would be a success. And that it was. We went to Mum and Dad's for Christmas. They made a roast, we bought some prawns, and all was well. The kids got suitable presents that weren't embarrassing on inappropriate, tick. Lunch was a success, tick. We left in the afternoon with little stress, tick. The bon bons were forgotten til after lunch, so we cracked them after we'd eaten, that's fine, no big deal.

We went camping after christmas, and we took my mother in law as well as the cousins. This was also a pretty good success.

Since coming home, the mother inlaw has had an accident in her car (her partner driving) and written off the car. She's also been to her doctor and been told that she's had another MS attack. She obviously does far too much and doesn't look after herself anywhere near enough. Her partner is verging on half blind, and shouldn't be driving, we also suspect he has Vascular Dementia, but we're struggling to get a diagnosis. Mother in law copes very well and her MS is very well managed through drugs.

She is the type of person who never says no, to anyone. She always says yes to babysitting, even if it's inconvenient or excessive driving. She looks after her partner, who has many and varied problems. She looks after my sister inlaw's kids and various other members of her partners side of the family. Her and her partner live in separate houses, but together, so they travel over 100km between these two houses. They manage 2 homes and alot of driving.

We've had to make a decision to take away most of her baby sitting, as much as she loves it, and as much as it hurts her, because she just does too much driving, too much running around. Hopefully the goal for this year, is to get them to slow down, stop travelling the 100+km trip multiple times in a week, and when they go to one house, they stay there for a week or 2 rather than back and forth doing hundreds of km in travel each week.  I am hopeful and doubtful at the same time. But at this point, all I can do, is take away any further obligations she has to help us out.

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.

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.