Big moves

So last Wednesday mum had a TIA or a stroke. She was sitting at the kitchen table in the morning after waking up ok. Her carer came in and said hello, then when they looked again, she was unresponsive. They called the ambulance and she went to hospital. The next day Dad called me to tell she was in hospital and they aren't sure if she's going to be cleared to come home. He said no need to race down to see her. They will just see how she goes with regard to recovery before making a decision.

I went down to visit on the weekend (without the kids because I didn't know what I was going to be walking into). I'm glad I didn't take them, because she has deteriorated a lot. She was very confused, agitated, paranoid and distressed. She all of a sudden can't hold he false teeth in properly, they are loose.

I spoke to Dad at length, he was very stressed about finances and how much it's going to cost to put her in a nursing home.

By Tuesday, Dad told me that the Dr's have suggested that Mum won't becoming home and will be put into respite until a suitable permanent spot is sorted out. Mum will be transported by ambulance transport to the nursing home and they will work on trying to settle her and adjust her emotional needs with medication.

Dad seems very upset and in quite a state, which is understandable.

Me, I feel relieved. I knew that it was time. I knew that it was no longer reasonable for her to be at home. And now, I feel, probably the least stressed that I have felt in the last 6-8 months. I know this will be hard, but there is light at the end of the tunnel. There is hope for brighter days in the future.


Alzheimers Diagnosed June 2011

2017 - will be a big year i think

I have been thinking about time lines lately, and when Mum was diagnosed and how long had symptoms been there before things got bad. I will endeavor to write it all down to serve as a reminder

The week before Christmas we went out for lunch with Mum and Dad. He suggested a place, and it seemed nice, but not appropriate for mum.  He had been there within the last 6 weeks, and still didn't grasp that the food was unsuitable considering her abilities and needs.

She needs to eat something simple that can be eaten with a fork or spoon now.  Instead this was a place where it was platters of dips and pates, and breads and miscellaneous stuff. She was so confused. She didn't know what to do with what, there were so many things on the table, she wanted to touch everything. In the end, dad had to put all the bits of finger food in her mouth with his hands. He had to put the dip on the bread and feed her like a one year old. She didn't know what goes with what, and got dip on her fingers and under her nails. It was humiliating for her.  He obviously doesn't think about choosing a place that has a simple array of foods. A single bowl, a single fork or spoon is what she needs. If given a knife and a fork, she just taps away at the plate without a clue what to do. Take the knife away, and she can eat independently with little help. If there are lots of things on the table (sauces, condiments, extras) that causes confusion. She doesn't know what is hers, what is shared and what is somebody elses.

Then last week, they came to visit us for the day. He didn't bring her tablets, so she missed her lunch time tablets, got agitated, and was in pain, and it couldn't be remedied. So the visit was miserable (again). She was in tears and they ended up leaving. I'm not sure why he thinks it is ok, at this point in the game to be missing lunch time tablets and delaying them for 5 or 6 hours.  Of course she is going to get confused and agitated when the drugs wear off, and aren't topped up. To leave the house without her pain tablets and her lunch time and afternoon tablets is very obviously going to cause upset for her, and then more drama and work for him in the long run.

She obviously is struggling to toilet herself and needs assistance with that.

The time has come when she needs to be in permanent residential care. Dad is unbearable. Friends and family are dropping like flies, and he continues on. He doesn't understand that everyone is burnt out from this, and that is why they pull away, he takes offence to it. He doesn't understand that people don't visit as much because it's not anyone's idea of fun to spend time with them. It's purely obligation and guilt and pity that drive people to visit. If he lets it go on too long, he will wake up and have nothing left.

He sent me a new years message that said "looking forward to a better year this year".  I wonder if he is blind to the facts or trying to block them out.  The facts as I see them are; this is quite probably going to be the worst year in his life to date.  This is going to be the year that he will need to make the decision to put mum in permanent residential care.  And then once he makes the decision, he will have to decide to either lie to her in order to save her some of the anxiety and stress leading up to that date, or decide to tell her the truth and deal with the consequences of that. Then he has to actually go through the process of putting her in a home. Then he has to go home alone and deal with that, think about what he is going to do with the rest of his life and proceed to mourn, grieve, visit etc. It's going to be horrendous, much much worse before it gets any better. Bleak.

One Way Street

So Dad decided to put mum into respite again this week, for mothers day weekend.

I hadn't spoken to them in maybe 2 and a half weeks, and obviously Dad is annoyed at me (to say the least). I got a (another) phone call telling me that I'm not offering any support and that he is is on his own, and it's a one way street.

This is all quite usual, when he can't deal, he rings me and has a go at me for not doing enough. Quite frankly I'm over it. I'm over being the worst daughter. The other daughter lives on the other side of the world, and I'm the one who's been here for the last 5 or 6 years through all of this hell, and I'm the one who cops it.

So he expects me to come and travel 4 hours to see her for mothers day and quite frankly, i'm feeling depressed. I'm feeling anxious, and I'm feeling like I just need a mothers day for me this year. Life has been on hold for the last 5 or 6 years. When can I just let go of these obligations and expectations and live my own life, for myself and my immediate family? Why do I have to have a miserable mothers day every mothers day? Why do I have to have a miserable Christmas, Easter, etc. etc. because I'm obligated to spend it with my parents, knowing full well that it will be miserable? Will it be one more year, five more years, ten more years? Will I ever be able to let go of my responsibilities and just do what I want?

I am at the point where I need to say no. I need to look after my own mental health, and prioritise myself, and my children, and my partner. And to do that, means to say no to everything else that makes me miserable.

Then I have to deal with the guilt of being the worst daughter. The guilt of, whatever I'm going through, what they are going through is so much worse.

But when I'm told that I do nothing, it certainly makes me think I've completely wasted the last five years trying to support, trying to be there, going to appointments, accommodating my parents for each appointment, because they live far away, and have stayed at my house probably 50 times in the last 5 or 6 years. Trying to ensure that I've included them in Christmas', Easter, Mother's Day, Father's Day, Birthdays etc. etc.

I just want to quit!  I've had enough!  Each time I visit them, or they visit me, it takes me a week or two to debrief and get over the experience, it is that miserable. I've been pretending and faking for years that I actually enjoy spending time with them because they are both miserable. They have no tolerance for me and my children and my partner and they don't appear to enjoy our company any more than we enjoy their company.

But, still, we persist. It's such a negative cycle.

Maybe it's time to put my foot down and look after my own mental health.

Maybe it's time to actually be the worst daughter, to actually not do anything.

Wow, so negative!

First Respite

THIS POST WAS FROM  QUITE SOME MONTHS AGO, I FORGOT TO PRESS PUBLISH SO THE DATE IS WRONG

Today mum went into a nursing home for her first session of respite. It was fairly traumatic for Dad by the sounds. I offered to go with him, but he thought it would be better to do it on his own. Apparently, the woman who had arranged the respite, took the day off today, so when they went in, nobody seemed to know what was going on, and they were stuck waiting around to find out details. Then after Dad cracked it at the staff for their poor organisation, the Matron of the nearby hospital turned up, and asked him "How's your mother going?" This sent mum into tears because, of course, she is not his mother, she is his wife, and she still has far too much mental capacity to let that one slip by un-noticed.

He was anything but impressed with their lack of empathy, and they didn't seem very well organised to welcome a new, young resident in with Alzheimers. Surely they need to have someone rostered on, who knows the story behind a person coming in for respite?

I hope Dad sticks with it, and holds out to give himself a break. I really hope he doesn't ring her every day and end up going in early to pick her up because she hates it. Because, it's inevitable, she will hate it, she will hate the food, she will hate being surrounded by people 15+ years older than her.

It is supposed to be 2-3 weeks. We will see how long they hold out. I guess, he will now need to realise that no nursing home is going to give her the same standard of living she has at home. Staff at nursing homes are generally low paid and with a low level of education and training. It's never going to be ideal, but it will be necessary.

Moving right along, like a freight train

So another Christmas has now passed, mum has deteriorated so much in the last 6 months. She now can't do much of anything by herself. She needs help to shower, to dress, to eat, to drink, to pick things up, she needs constant reminders to keep doing something because she loses track of what she was doing. She can't use a knife and fork properly and just taps them on the plate not really knowing how to operate them, she needs to just be given a fork or spoon and have the knife taken away to stop her confusion. She can't communicate well verbally anymore and when she speaks you have to guess what she's trying to say. She'll begin a sentence and stop part way through, needing prompts and often her voice is that blubbered that you can't understand the words she's trying to say.

She sleeps, alot. She sleeps about 10-12 hours a night, then has multiple naps during the day time. Usually at least a couple of solid hours in the afternoon plus multiple little naps whenever she is sitting down in a lounge chair.

Recently when I was at her house, she fell asleep twice whilst standing up. Once at the sink, I heard the water running for a long time, so came to investigate, and there she was standing at the sink with the head dropped, asleep. Then I told her to sit down on the couch, walked her to the couch, and then got side tracked. When the kids went in, they said she was standing near the couch, asleep standing up.

She is on methodone for pain relief, but even when that isn't taken, she is constantly sleeping.

The Parkinson's tremors seem to be amping up quite a bit. The balance is worse, stepping up and down from a small step or into a door with a small step is a big issue.

I've been suggesting to Dad all year that she needs to go into respite, but he has been refusing so far, saying that he'll get respite into the house, but won't send her to a nursing home for respite because she gets so upset at the conversation about it and she doesn't want to go. Even up to a month or 6 weeks ago, he wasn't interested in it. But obviously she has gotten alot more agressive towards him and he has finally turned the corner with that and has decided that she needs to go to a nursing home for respite.

She has recently had an ACAT assessment and we are awaiting the results, hoping that she will be now eligible for 12 weeks of respite per year. Dad has told me that he intends on putting her in some time in January whenever he can get her in. He has opted for a couple of nursing homes that aren't as close to home which is great. It indicates that he has listened to me, because she used to work as a nurse and in hospitals and nursing homes in their area, so I have mentioned that it would be a bad idea to put her in locally as there will be many people who would know her and recognise her and therefore humiliate her. If she goes to a place where she doesn't know anyone, there won't be any need for her to be humiliated. Where they live, is a country town, my Dad knows hundreds of people locally and they all recognise her and speak to her when they see her. I don't think she's that far gone that she won't care when they see her in a nursing home at her age (61 years old).

I'm really hopeful that this will work out well with the respite and will give Dad the opportunity to have a rest, let go of the stresses for a couple of weeks and get a bit of his sanity back. I imagine that by the time that another year passes, it will be time for mum to go into a nursing home full time.  I look forward to Dad being able to actually enjoy his life again and live a little. It's almost 4 years now since the Alzheimer's diagnosis and to be honest I hope that this next bit goes as fast as possible. The worst bit is when they still know what's going on, and understand how bad they are getting. Once they lose that consciousness, I hope she will be able to just relax a bit and let some of her tension go.

It's impossible to talk to her now. I don't know what to say, it's just so awkward.

I'd say that this year is going to be a tough year, the toughest yet in this journey.

It’s been quite a while

It’s been quite a while since I’ve posted.

I guess it’s just the time between crises.

Last week was another mini crisis. My Dad injured himself working, and had to have surgery, so I had to babysit mum for a couple of days at my house. It’s impossible because she is really deteriorating and now Dad does “EVERYTHING” for her.  When she’s not at home, she is really anxious and confused. I have to work, I work casually, in a new job, I don’t have the luxury of annual leave, sick days, family leave, any of that. I’m trying to get a permanency, so I have to accept every shift I possibly can and be reliable. I can’t let my family problems affect my work life at this point. I get home from work, Mum’s crying because she doesn’t want to be alone. The next day, crying because she doesn’t want to go into a nursing home. At 3am, I have kids coming into my room crying because they are scared of the noises she makes in her sleep. It’s anything but ideal.

The euthanasia debate sparks hot with me and my partner. No matter how hard I try, I just can’t seem to get him to see it my way. He understands that I am pro euthanasia, and thinks it’s a reasonable concept. But doesn’t seem to grasp that if you have dementia, you are out of the euthanasia game because of the mental capacity issue, so the only way to go would be to euthanaise yourself (or commit suicide). He can’t handle the concept of suicide. But can’t grasp that when you lose mental capacity, you tend to get medications forced upon you by your family or your nursing home.  You don’t get a choice, and it’s hard to be firm when you are confused and scared and lost and mentally incapable of thinking complex thoughts and following them through.

I have been saying for years and years, well before mum was ever diagnosed with alzheimer’s that if I ever get it, I hope I have the courage to euthanaise myself. He finds it horrendous, and thinks that me committing suicide would be worse than dragging my family through alzheimer’s again. I am so adamant that I will not live through alzheimers, and he is so adamant that I couldn’t possibly do that to my children. Even though I strongly feel that I’d be doing myself and my family the biggest favour by not dragging them all down with alzheimers again. I’ve been through it with my grandfather (when I was at school), with my mum and my grandmother inlaw. I know that it’s not what I want. I don’t want to be subdued with medications to make myself easier to handle. I don’t want to attempt suicide and then be put on the strongest anti-depressents and put into mental institutions. I just want to take the most humane exit and let my family get on with their life.  And then when I get this brick wall the moment I try to talk about it, I think, I can’t even have a rational conversation about my wishes, so I can’t even discuss it, if and when the time ever comes, because he’d just block me, stick me in a mental hospital at risk of suicide.

So, I’d just have to run off and do it without telling anyone and leave a letter, rather than risk being forced to not carry out my wishes.

My position is strong on this subject, it has been for decades. I’ve spoken about it long and hard with my mum, all through my life, up until now, I’ve  never wavered. And If my mother had the courage to “euthanaise” herself, as much as it would hurt, I’d understand that it’s not worse than 15 or 20 years of suffering through alzheimers. So, I’m on my own, and I know it if I ever have to face it. I know I can’t just fly to Switzerland and get it done professionally for a fee if Alzheimers is a factor. I know I can’t discuss it with medical professionals because it’s a no go zone. I know I can’t discuss it with my partner because of his catholic base beliefs. My children, well I guess I can talk about it over the years as a general conversation, and see how that goes, but in the end, it would be a detailed letter left hoping that eventually the scars would be less from my self inflicted “euthanaisia” than they would from 20 years of alzheimers care and torture. Surely the scars I have are going to be as deep if not deeper than the scars of a very logical, well thought out suicide.

Of course this is only if I get alzheimers, but it’s something I have to think about, because I’ve seen mum go through it, and miss the opportunity, I’ve seen her forced into treatment and medication and accepting that it’s not so bad, and it’ll all be ok. It’s not ok, not ok in any way whatsoever. Her life is miserable, plain and simple. Why would I ever subject myself and my children to what I’ve now had to endure twice. It’s hell. Death, as I’ve said a million times, and will likely say a million more, is the silver lining.

People find it so impossible to discuss the concept of euthanasia and suicide, but then they don’t have the tolerance to deal with the icky business of keeping people alive when there is no point in life. Honestly, my partner hasn’t been to the nursing home to visit his nanna (20 odd years with alzheimers and now 98 years old) he hasn’t been to visit in probably 3 years. But then he has the audacity to tell me that I can’t take matters into my own hands if this fate ever befalls me. I’m sorry, I don’t find that acceptable.  I don’t think that anyone should try and force life upon anyone who doesn’t want to live.

I know it probably sounds morbid, maybe anyone reading this thinks I’m already depressed or suicidal. I’m not, I’d just rather be treated like any good dog and put down once I reach my used by date, once my life has no quality or hope.  Life is not that precious that we should torture ourselves to placate our loved one’s fears and insecurities. Everyone lives, everyone dies, it’s just life. 

Euthenasia, yet again, i thought we were over that!

After silence on the subject for a year or so, mum's back at me again to do something about euthenasia for her. I went to visit for her 60th birthday for a few days with my children, and the moment my dad left the house she was talking about it again, inferring that I should help her to get some help on this matter. It's clear that she won't even broach the taboo subject with him. 

I'm tired of it. What I wanted to say was this, but of course I couldn't, so i'm just going to vent it on here" 

Mum, nobody is going to help you euthenaise yourself. In the first instance, it's illegal in this country, you have alzheimers, even if it wasn't illegal, they wouldn't touch you with a barge pole, because you are not mentally competent, let alone can't articulate your wants in any clear way. The only way I know what you want, is because I've known you my whole life. I watched you deal with your dad who had alzheimers, I've watched you as a nurse your whole life reminding me again and again, "If I ever get like that, shoot me". I'm over it, if you want it done, you are going to have to do it yourself. As much as I am pro-euthenasia, I am a mum, I have two small children, and obviously have a committment to them which comes way before my committment to ease your suffering. Unfortunately, if you want it, you are just going to have to do it yourself. If you can't, shut up and stop trying to guilt me into breaking the law in order to help you.

Wedding Bells

My sister is getting married later in the year. Mum is fixated on going, travelling across the world on a 20 hour flight to see this wedding. 

I believe she is in no fit state to do the trip. She has Alzheimer's and Parkinsons. 

Last time she flew that flight, she had full blown panic attacks, crying, screaming "get me off, get me off" etc. This was 4 years ago when she was a normal functioning working independent adult. Public transport was causing panic attacks, crowds and cars and confined spaces were causing panic attacks etc. Two years after that she was diagnosed with alzheimers, then a year later parkinsons. 

She can't even go into a cinema without having a panic attack. She gets agitated and confused easily, she gets quite aggressive towards dad (her carer). She is only 60, and she does deserve to go to her daughters wedding, but I can't see it working. She doesn't adjust well to anything that isn't her usual environment. 

I can't see it being anything but a train wreck. A very very expensive train wreck at that. After many hours of conversations, I think I have made a decision. If they (mum and dad) are going, I won't be going. As harsh as it is, I don't have the money, I never go on holidays overseas, and I can't justify spending that much money, money that I don't have, on a holiday that will be a complete train wreck. 

If mum and dad don't go, I will go into debt and put the holiday on my credit card, because I will enjoy the experience. I'll travel, on my own (can't afford to take my partner and children) and I will have fun, I will enjoy the wedding and the experience in general. I will support my sister and be there for her. But unfortunately, I can't go into debt, to endure the stress and have a hideously unpleasant experience that will be nothing but a nightmare experience to remember forever. 

I know that will hurt my sister, but it won't make the experience any better for having me there. It will be a disaster, with or without me spending money I don't have. 

This week I have felt quite envious

It feels terrible to say it, and fills me with all kinds of guilt, but someone I know lost their mum this past week to cancer.  I felt somewhat envious.  It was about 8 weeks between diagnosis and death.  It was a whirlwind (or should I say tornado) of events for the family in those 8 weeks from diagnosis, 100% dietary changes, to surgery, a pretty bad prognosis, then a whilrwind trip to Mexico to have an alternative therapy, back home again, preparing for chemo, and then she sadly passed away before she could have the chemo.

It's terribly sad that someone with so much energy, fight, and passion for life was taken away so quickly. But at the same time, it wasn't a long and torturous death, it didn't drag the family through years (or decades) of pain and emotional turmoil.  The fight was over almost as quickly as it began.

That's all I have to say.  I know it sounds wrong on so many different levels, but I guess if I were to have a choice, I'd choose a quick death over a slow death any day.  I've said it before, and no doubt I'll say it many times again, that in my mum's scenario, cancer would be the silver lining, the easy (easier?) out.

Is it really Alzheimers?

Mum and Dad went to see the neuro psych who discharged her last year as he was no longer working at that particular hospital. Mum, decided that she wanted to see him again, and so they tracked him down and made an appointment.

They came over after the appointment and told me that it was a great appointment, he was really good today, that his question to them was "Is it really Alzheimers?" I asked what was that based on, mini mentals tests etc? Yes. Apparently he done a different type of mini mental type test, and the result wasn't that great. But for some reason he feels that it may not really be Alzhiemers.

He is trying her on a new Parkinsons's patch which apparently they've had some success with dealing with the "pain" issue. And if she can cope with the side effects of that, he might be able to take her off some of the narcotic pain killers. Which my Dad is all for, he hates how much medication she is taking, and is very anti-drugs.

I've never liked this Dr, he has no people skills as far as I'm concerned. And it seems that the one appointment I didn't go to, he's come up with some ground breaking hypothesis. I hope he's right, but I doubt it. If it's not alzheimers, she has some very very serious mental conditions going on. They have another appointment today, with her usual very good geriatrician. I have to work, so won't be able to attend. The joys of returning to work 6 days a week now my kids are in school.

I don't think it's a very professional thing to do to put a big question like that out there to someone with Alzheimers. If she does have Alzheimer's, it's false hope, setting her up for yet another massive kick in the guts when she is re-told that unfortuntely, all hope is lost, yet again, the initial double diagnosis of Alzheimer's and Parkinson's still stands. Honestly? Can you not do A LOT more searching and diagnosing and testing than one quick appointment to try and come to those kinds of conclusions? Can you not think of the mental chaos that would throw you into as a family?

Mum would be celebrating in her mind, yay, it's not Alzheimer's, jackpot. But then to be told again that it is later, will break her shattered heart into a thousand more pieces.

That after everything else, would be horrible for her. And if that's the case that she has to be re-diagnosed, re-told the bad news, and then in a few months her birthday comes up and she'll likely lose her licence again, after having it taken away, then given back already once before... No wonder the poor woman is an emotional wreck, She's been on the never ending roller coaster.

I'd love to be positive and hopeful for her, and I hope it's true, but in this doctor, I simply have no faith. I'll wait and hear what the geriatrician with a sense of logic and good people skills has to say about it. I at least have faith in her and will listen to her opinion before getting even a little bit hopeful. I know he's a neuro psych, and he's probably very smart, but it takes alot more than academics to make a good doctor, some of them should never be put into the ring with actual patients to toy with their emotions and lives.

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.

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.