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.
A blog, to track the journey of my mum's alzheimer's journey from diagnois. The effect it will have on me, her, and the rest of the family.
Wednesday, 4 May 2016
Monday, 28 December 2015
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.
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.
Tuesday, 7 April 2015
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.
Sunday, 27 July 2014
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.
Sunday, 1 June 2014
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.
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.
Thursday, 27 March 2014
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.
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.
Wednesday, 19 March 2014
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.
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.
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