Sunday, January 31, 2010
A Trip to Huskisson
Mum had a lovely time on Friday when I drove her down to Huskisson. This is where she used to go on holiday with her parents from the time she was born. She owned a holiday house there until recent years. We had lunch at the RSL club and then went and looked at the beach. We bought some bread from the Huskisson Bakery.
We saw a horse and cart and I took a photo.
It was so good to get through a whole day without her getting angry and upset about anything. We'll have to do this again soon.
Tuesday, January 26, 2010
The Long Walk
Mum couldn't get me on the phone today. Her problem was an abusive phone call from my brother. She had wanted me to drive over there at 8 a.m. and take her out for the day, so she could forget the phone call and stop being upset.
My brother is constantly demanding that she revoke the guardianship certificate she has given me. I don't know what his problem is. I'd like to see HIM put up with what I have to, he wouldn't last five minutes on the job. He'd put her straight in a nursing home.
She decided to walk to my house. She has never done this before. She has got a taxi to my house about a year ago when she was very angry with me. When she got here, I had to lock myself in my room for three hours to avoid being attacked by her. I realize now I should have called an ambulance.
But today she decided to walk. It was already 30 C at 8.30 a.m. (90 F). It was muggy, and the walk was all uphill. She was dressed inappropriately for the occasion, in long pants and a winter coat. She always dresses inappropriately lately, but she tells me that even on a hot day she feels cold, which may be her renal failure and the fact she is too thin.
The distance is about four kilometres or two and a half miles.
It is a wonder it didn't kill her. She arrived in quite good condition, and had apparently cheered up along the way, so all she wanted was a cup of tea.
After a few cups of tea, she decided she wanted to go on a short drive to the beach. I was able to take her home.
I don't know why she didn't get a taxi. Maybe she couldn't remember my address.
I am very worried at this new development. I have heard that old people will start wandering, going on longer and longer walks, until one day, they forget how to get back home.
My brother is constantly demanding that she revoke the guardianship certificate she has given me. I don't know what his problem is. I'd like to see HIM put up with what I have to, he wouldn't last five minutes on the job. He'd put her straight in a nursing home.
She decided to walk to my house. She has never done this before. She has got a taxi to my house about a year ago when she was very angry with me. When she got here, I had to lock myself in my room for three hours to avoid being attacked by her. I realize now I should have called an ambulance.
But today she decided to walk. It was already 30 C at 8.30 a.m. (90 F). It was muggy, and the walk was all uphill. She was dressed inappropriately for the occasion, in long pants and a winter coat. She always dresses inappropriately lately, but she tells me that even on a hot day she feels cold, which may be her renal failure and the fact she is too thin.
The distance is about four kilometres or two and a half miles.
It is a wonder it didn't kill her. She arrived in quite good condition, and had apparently cheered up along the way, so all she wanted was a cup of tea.
After a few cups of tea, she decided she wanted to go on a short drive to the beach. I was able to take her home.
I don't know why she didn't get a taxi. Maybe she couldn't remember my address.
I am very worried at this new development. I have heard that old people will start wandering, going on longer and longer walks, until one day, they forget how to get back home.
Messagebank has to go
I had Messagebank on my phone. Unfortunately, this was an opportunity for Mum to leave a series of panicked messages when she was unable to get me, either because I was out or had pulled the plug on the phone for some peace.
When she can't get me to make demands on me she gets very frustrated and angry and I couldn't handle these messages any more after I found 11 in one morning. I had decided to sleep in, so I pulled the plug on the phone, knowing Mum would be at me from 7.30 a.m. Being Australia Day, I just wanted at least one day of rest.
She still knows what an engaged signal means and if she hears that, she might decide to give up trying to call me, realizing I am not going to let her through. I don't care what she does to be honest, she can knock on the neighbours' door or CALL SOMEONE ELSE, BUT LEAVE ME ALONE. If these were REAL problems that she has, it would be different. But it's always imagined problems or small things that don't matter, such as losing her glasses (I can find them when I get there the next day).
Dialling Message Bank and then having to listen to all her messages has been stressing me out of my brain. Often she gets more and more angry, eventually shouting "Never contact me again, I am finished with you!" or something like that.
When she can't get me to make demands on me she gets very frustrated and angry and I couldn't handle these messages any more after I found 11 in one morning. I had decided to sleep in, so I pulled the plug on the phone, knowing Mum would be at me from 7.30 a.m. Being Australia Day, I just wanted at least one day of rest.
She still knows what an engaged signal means and if she hears that, she might decide to give up trying to call me, realizing I am not going to let her through. I don't care what she does to be honest, she can knock on the neighbours' door or CALL SOMEONE ELSE, BUT LEAVE ME ALONE. If these were REAL problems that she has, it would be different. But it's always imagined problems or small things that don't matter, such as losing her glasses (I can find them when I get there the next day).
Dialling Message Bank and then having to listen to all her messages has been stressing me out of my brain. Often she gets more and more angry, eventually shouting "Never contact me again, I am finished with you!" or something like that.
Sunday, January 24, 2010
My whole family has been destroyed by this
Mum's illness has caused the family to split and the rift will never go away. My brother has continually denied anything is happening. He's called me a liar whenever I've asked for help and now his anger has escalated to the point where he's been ringing Mum and abusing her, demanding that she stop me from looking after her and accusing me of taking her money.
I think it came to a head when I used my frequent flyer points to take her on holiday to Townsville. He thought I had used her money for the holiday. He was demanding an audit of her bank accounts and he shouted at her and demanded a copy of her will, which she sent to him even though I told her he is not entitled to have it.
She was puzzled when she rang him to say what a nice holiday she had and all he could do was shout and say "I don't want to hear about it." How could anyone shout at and abuse their own mother?
I have only one brother, and only two nieces and a nephew. I probably won't ever see any of them again. It is a shocking thing to happen, right when I needed someone to support and help me with Mum.
The other day, my brother and his de facto came down to see Mum and obviously to make trouble. They live 250 kms away which is one thing to be grateful for. I had to be at Mum's place to talk to the Homecare lady about cleaning help for Mum. I can't clean her house as well as mine as I have chronic fatigue. I went to the door and I heard his voice, telling Mum what to do and putting me down. So I knocked on the door and Mum came. She said "You can't come in, your brother's here." I said I had to be back in 20 minutes because of the Homecare visit. I went away and came back. They were still there. I went and sat in the loungeroom, trying to stay out of their way, but I could hear what my brother and his de facto were saying to Mum, trying to convince her I am the worst person in the world and even calling Mum a liar. I had had enough, so I took the guardianship document out of my handbag and went to the kitchen door. I said "You can't come down here shouting and abusing Mum! I have guardianship and I want you to leave now."
Then my brother assaulted me. It was terrible.
I have been to the police and they have applied for an Apprehend Violence Order.
I would be happy if he'd just sign an agreement to stop verbally abusing and harassing me and his mother and if he'd agree to attend a Community Justice Centre to talk about how this situation has escalated and what can be done about it. He'd never agree to talk to me though. So I guess it will be settled in court.
He will have the free services of the Navy solicitor so I hope the police prosecutor is good.
I think it came to a head when I used my frequent flyer points to take her on holiday to Townsville. He thought I had used her money for the holiday. He was demanding an audit of her bank accounts and he shouted at her and demanded a copy of her will, which she sent to him even though I told her he is not entitled to have it.
She was puzzled when she rang him to say what a nice holiday she had and all he could do was shout and say "I don't want to hear about it." How could anyone shout at and abuse their own mother?
I have only one brother, and only two nieces and a nephew. I probably won't ever see any of them again. It is a shocking thing to happen, right when I needed someone to support and help me with Mum.
The other day, my brother and his de facto came down to see Mum and obviously to make trouble. They live 250 kms away which is one thing to be grateful for. I had to be at Mum's place to talk to the Homecare lady about cleaning help for Mum. I can't clean her house as well as mine as I have chronic fatigue. I went to the door and I heard his voice, telling Mum what to do and putting me down. So I knocked on the door and Mum came. She said "You can't come in, your brother's here." I said I had to be back in 20 minutes because of the Homecare visit. I went away and came back. They were still there. I went and sat in the loungeroom, trying to stay out of their way, but I could hear what my brother and his de facto were saying to Mum, trying to convince her I am the worst person in the world and even calling Mum a liar. I had had enough, so I took the guardianship document out of my handbag and went to the kitchen door. I said "You can't come down here shouting and abusing Mum! I have guardianship and I want you to leave now."
Then my brother assaulted me. It was terrible.
I have been to the police and they have applied for an Apprehend Violence Order.
I would be happy if he'd just sign an agreement to stop verbally abusing and harassing me and his mother and if he'd agree to attend a Community Justice Centre to talk about how this situation has escalated and what can be done about it. He'd never agree to talk to me though. So I guess it will be settled in court.
He will have the free services of the Navy solicitor so I hope the police prosecutor is good.
Wednesday, January 20, 2010
Three Normal Days
Mum has been great the last three days. Very few memory problems at all, no temper tantrums and easy to manage. I can hardly believe how lucky I've been.
I don't suppose it will last, but it's been very peaceful.
Her iron levels are so low, at the Renal Clinic today the doctor said she has to have an iron infusion.
I don't suppose it will last, but it's been very peaceful.
Her iron levels are so low, at the Renal Clinic today the doctor said she has to have an iron infusion.
Saturday, January 16, 2010
The Butterfly Bush
Since Mum moved into her house about four years ago, she's been obsessed with the idea of chopping down every tree in the yard and chopping out every bush.
I was devastated when she paid someone a ridiculous amount of money to remove a rainforest garden planted under the huge old paperbark tree. Then she started getting quotes to get rid of the paperbark tree itself: $3000-$5000. I had to stop her, so I got the kids (now aged 22 and 23) to send her text messages that if that tree was chopped down they wouldn't be able to visit her any more because they'd be too sad seeing the placed where the tree used to stand.
When she started tearing things out of the garden, old roses and so on, it didn't occur to me that it is part of the dementia, but it is. It's caused by paranoia. She believes that trees are going to fall on her or on the house, no matter how far from the house they are. Now she is paranoid that burglars are going to get in, and she thinks if there are no trees or shrubs blocking the view of the windows, the neighbours will be able to watch for burglars. It's no use telling her the neighbours are not out on the road watching her house at 2 o'clock in the morning.
Yesterday I arrived at her house to a horrible sight. The butterfly bush that had been planted probably more than forty years ago, and was absolutely beautiful, was chopped into pieces and lying all over her front yard.
How had she managed to get someone to do this without me knowing? It had to be after I dropped her off in the afternoon. I thought she'd be so tired every day after going to the shops and the club for lunch, that she wouldn't have the energy to cause any problems. I've been watching her to make sure she doesn't employ workmen at inflated rates to do 'work' in the yard unless I have approved it. But it's not helping. As well, she paid the man $130 in advance for carting the dead tree away and of course he hasn't been back.
I am so upset! On Tuesday I took over guardianship of her, signing the necessary document at the solicitor's, and I thought I could stop these kinds of things from happening. Well I now know it is not a magic piece of paper that keeps people out of her yard.
But unless I am over there twenty four hours a day, I realize I can't stop it. She went through $45,000 in the last four years, paying workmen to do all kinds of unnecessary jobs around the house. I had no access to her bank accounts until a few weeks ago, so I had no idea she was taking out thousands of dollars at a time from her investment account to pay these people, some of them very dishonest. I didn't realize the extent of the work she was getting done or the amount it was costing. I thought the money she was paying out came from her fortnightly income.
There were signs of odd behaviour and beliefs, paranoia and forgetfulness, but over the last couple of years I have not questioned her ability to make decisions about the house and garden. I should have. If you are reading this and your elderly parent has some forgetfulness, hurry and get access to their accounts so you can check what they are spending.
I will spread the word in the street that I am now officially her guardian and that no work is to be carried out without my approval. But that's probably not going to work either. She'll call some gardener or handyman that she's found in the newspaper and they won't know they're not supposed to be there.
The worrying thing is that she could go back to the solicitor and revoke the guardianship. If she convinces the solicitor that she is mentally alert at the time, she can do that. She can also revoke the Power of Attorney.
I have discovered that under Australian law, you cannot force a person to do what you want them to, even with guardianship. You have to consult them, no matter what stage of dementia they are at. You cannot say, "No, you can't do that or buy that or go there!" In that case, it's a wonder any old person ever ends up in a nursing home, if all they have to do is say no.
I don't know what the hell I am going to do. Being on my own, it is just impossible. I am so frightened, I woke up at 3 a.m. and couldn't get back to sleep. I imagined the paperbark tree in pieces all over the back yard and $5,000 missing from her bank account. I imagined her getting nasty and throwing things, which she does sometimes, and wondering how I am going to put up with that.
I also lay awake thinking of the beautiful butterfly bush that wasn't doing any harm and is now dead.
Sunday, January 10, 2010
Sunday and a Vacuum Cleaner
I don't live at Mum's place. She lives about a kilometre from me. So she's always ringing me up in a panic. Today she rang and said, "There's something wrong with that new vacuum cleaner. It hasn't got one of those things that lets you get close to the floor."
When I arrived I was astounded to find that she'd tried to vacuum the floor with the new vacuum cleaner without a hose! She'd gone all through the house holding the cleaner upside down with the hole the flexible hose plugs into sucking up the dirt.
I can't believe she did that! Wow, that is so weird! I got the hose and plugged it in. I showed her how it worked. I didn't think to leave the hose plugged in; I assumed she remembered how vacuum cleaners work.
But she doesn't. A very worrying sign. Still, I could see the humour in it.
Saturday, January 9, 2010
Sometimes she knows there's something not right
Sometimes Mum has insight into her forgetfulness. She gets sad and confused and says, "Do I have dementia?" My answer is, "Once we get to 60 we all have a bit of dementia. We all start forgetting things."
The last few days, Mum has been sure a lady is coming to clean the house. No-one is coming at all! She's been ready every morning with some cash ready and she's cleaned her house thoroughly so that the cleaning lady won't think she's dirty.
She's hiding everything that the cleaning lady plans to steal that she thinks is valuable, including cheap plastic jewellery. It's all hidden away and I'll never find it again. She's very paranoid.
Poor Mum! I'm feeling more sorry for her than myself today, because she's been quiet and sad, rather than angry, argumentative and even violent, which she often is.
But mostly I feel sorry for me. She looks like my mother, she sounds like my mother BUT MOST OF THE TIME SHE ISN'T MY MOTHER. It's frightening. This person who's taken over from my mother gets all maudlin and clingy and makes a grab for me to hug me. I jump out of her way, horrified. I don't know you! Who are you? Go away! Don't touch me!
When I go back home I feel so ashamed of myself. I didn't want to hug my mother. No, I didn't, because IT'S NOT MY MOTHER.
I am so glad she lives at her house and I live at mine, because if I had to be with her 24 hours a day, I think I'd jump under a train.
People say I should be concerned that while I'm not with her she'll try to cook something and start a fire and burn the house down. This is awful, but I DON'T CARE. My sanity is more important than worrying about a fire that might never happen.
I don't think she'll cook anything though. She's always hated cooking and housework. I can't see her getting interested at this late stage.
The last few days, Mum has been sure a lady is coming to clean the house. No-one is coming at all! She's been ready every morning with some cash ready and she's cleaned her house thoroughly so that the cleaning lady won't think she's dirty.
She's hiding everything that the cleaning lady plans to steal that she thinks is valuable, including cheap plastic jewellery. It's all hidden away and I'll never find it again. She's very paranoid.
Poor Mum! I'm feeling more sorry for her than myself today, because she's been quiet and sad, rather than angry, argumentative and even violent, which she often is.
But mostly I feel sorry for me. She looks like my mother, she sounds like my mother BUT MOST OF THE TIME SHE ISN'T MY MOTHER. It's frightening. This person who's taken over from my mother gets all maudlin and clingy and makes a grab for me to hug me. I jump out of her way, horrified. I don't know you! Who are you? Go away! Don't touch me!
When I go back home I feel so ashamed of myself. I didn't want to hug my mother. No, I didn't, because IT'S NOT MY MOTHER.
I am so glad she lives at her house and I live at mine, because if I had to be with her 24 hours a day, I think I'd jump under a train.
People say I should be concerned that while I'm not with her she'll try to cook something and start a fire and burn the house down. This is awful, but I DON'T CARE. My sanity is more important than worrying about a fire that might never happen.
I don't think she'll cook anything though. She's always hated cooking and housework. I can't see her getting interested at this late stage.
Calling 000
Four weeks ago, Mum thought she heard someone trying to break down the back door. That's why she ended up getting a new security door. There's really no evidence that anyone was there, and since they allegedly went away when she turned all the lights on, they weren't very good burglars.
Mum called 000. Apparently the operator didn't put her through to police. She said something like "There there dear, you're safe now, just go back to sleep." So Mum must have sounded really confused and strange, or they would have put her through.
For the next three days, Mum told me and the neighbours that she called 000 'last night' because someone was breaking in. I hope she didn't, but she might have. I wonder if they'll get my name and phone number and tell me to make her stop.
I left one of my watch dogs with her for a few nights but she still thought someone was trying to get in. They'd have some nasty bite marks on them if they did.
I wrote the number for the police in big letters and stuck the piece of paper above the phone so hopefully she'll call them and not the emergency number. They might be better able to deal with her calls than the 000 operators.
I've taken away her phone book and replaced it with one containing only the numbers of her friends and relatives, to stop her ringing plumbers and electricians and tree loppers and handymen. If I don't stop her, she'll use up every cent she's got getting things done that don't need doing.
She's really paranoid about the beautiful fifty year old paperbark tree in the yard. It's not going anywhere. I'm determined it won't be chopped down.
Mum called 000. Apparently the operator didn't put her through to police. She said something like "There there dear, you're safe now, just go back to sleep." So Mum must have sounded really confused and strange, or they would have put her through.
For the next three days, Mum told me and the neighbours that she called 000 'last night' because someone was breaking in. I hope she didn't, but she might have. I wonder if they'll get my name and phone number and tell me to make her stop.
I left one of my watch dogs with her for a few nights but she still thought someone was trying to get in. They'd have some nasty bite marks on them if they did.
I wrote the number for the police in big letters and stuck the piece of paper above the phone so hopefully she'll call them and not the emergency number. They might be better able to deal with her calls than the 000 operators.
I've taken away her phone book and replaced it with one containing only the numbers of her friends and relatives, to stop her ringing plumbers and electricians and tree loppers and handymen. If I don't stop her, she'll use up every cent she's got getting things done that don't need doing.
She's really paranoid about the beautiful fifty year old paperbark tree in the yard. It's not going anywhere. I'm determined it won't be chopped down.
The back door won't open!
8th January 2010. I spent several hours with Mum. She had appointments to go to and shopping to be done. We had a look a a nice retirement village overlooking the sea. I don't think she'd pass the test for unassisted living though. I sometimes think she'd probably qualify for the dementia unit, but the memory problems, paranoia and strange ideas come and go. They're intermittent. Some days she's like her old self. She said she'd like to live in that village, but I don't think she'll make it there. I feel horribly sad and depressed over it.
Two days ago she got a new security door installed out the back.
I dropped her off home, went in and did a few things and then went home so exhausted from stress that I fell asleep on the lounge.
The phone rang. It was 7 o'clock. She's usually in bed asleep by then. It was Mum. "I can't open that new back door!" she said. "It's jammed! I have to be able to get out! You have to contact the people that installed it now and get them to come back!" I said, "Mum, you don't need to get out right now. Just lock the wooden door and go to bed. I'll look at it in the morning." "You hate me! You don't want to do anything for me! It's true what your brother said!" she shouted and slammed down the phone.
I thought: Good, she's gone. I went back to sleep. The phone rang again.
"I can't open that new door!" she said. Aaaargh.
I couldn't go anywhere, I was that exhausted. I rang her neighbours and they kindly went up there to see what was wrong.
They found the key to the door lying near the front of the house on the floor. There was nothing wrong with the door. She'd locked it herself.
When they'd arrived, she'd wanted them to call the door installers and make them come.
But the problem was solved - until next time.
When I've spent all day with her, I just want to go home to my house and rest. I don't want to be on call 24/7. I will go crazy if this keeps up.
Two days ago she got a new security door installed out the back.
I dropped her off home, went in and did a few things and then went home so exhausted from stress that I fell asleep on the lounge.
The phone rang. It was 7 o'clock. She's usually in bed asleep by then. It was Mum. "I can't open that new back door!" she said. "It's jammed! I have to be able to get out! You have to contact the people that installed it now and get them to come back!" I said, "Mum, you don't need to get out right now. Just lock the wooden door and go to bed. I'll look at it in the morning." "You hate me! You don't want to do anything for me! It's true what your brother said!" she shouted and slammed down the phone.
I thought: Good, she's gone. I went back to sleep. The phone rang again.
"I can't open that new door!" she said. Aaaargh.
I couldn't go anywhere, I was that exhausted. I rang her neighbours and they kindly went up there to see what was wrong.
They found the key to the door lying near the front of the house on the floor. There was nothing wrong with the door. She'd locked it herself.
When they'd arrived, she'd wanted them to call the door installers and make them come.
But the problem was solved - until next time.
When I've spent all day with her, I just want to go home to my house and rest. I don't want to be on call 24/7. I will go crazy if this keeps up.
When no-one believes you
I feel so sad and alone tonight. I have tried to tell my brother and his 19 year old daughter for some time that something is wrong with my mother.
When I sent him an email asking him to help me with a problem, he rang her and read it out to her, telling her I was telling lies about her. It took three weeks to calm her down.
He never believed me when I told him that Mum has chronic kidney disease, or a serious blood condition (which has cleared up) or blindness caused by macular degeneration. I should have just stopped telling him things.
Anything I told him, he'd ring Mum and ask if it was true. She'd always say "No, I am fine, I've never felt better." Either she didn't recall the doctor's words or she didn't want to worry him. So this was more 'evidence' that I was a liar.
Recently Mum had a type of fit on a plane. She just fell unconscious in her seat with her eyes wide open. I thought she was dead. On landing, she was rushed to hospital. I thought: this is it. She's going to die. I really have to ring my brother (even though I'd promised myself I never would again).
So I rang him and he said "Is this another one of your lies?" I told him the name of the hospital. I was there, later, when he was speaking to the doctor and I could hear what he was saying. Was she really taken by ambulance from the plane? Did she really collapse? I heard the doctor say "She says she has a brother living nearby and he will come and get her tomorrow." I don't know what my brother made of that. She has no brother; he died three years ago.
I took her home the next day and my brother sent his 19 year old daughter down to see her. I don't know why he didn't come himself. But then he's only ever seen his mother a few times a year and he never bothers to ring her. He's never shown any interest in her welfare whatsoever.
I made an appointment for her with her own doctor, who has seen evidence of the dementia when she didn't recognize him or recall that he'd given her antibiotics three days before. In fact, he was the first and only health care worker to say to me, "Did you know your mother has dementia?"
My niece took Mum to the doctor. I just let her go, I was so exhausted. It turned out later, that she'd said I didn't want anything more to do with my mother and she was going to live in another city 300 kms away.
My niece took my mother away to my brother's house. I rang her on her mobile phone, which she can still use, and she told me she was having a brain scan. I rang my brother to enquire about this and he slammed down the phone. He did this a few times, on one occasion saying "I don't talk to liars."
I rang Mum a few more times. I asked her to call out to my brother and ask when she was coming home. The answer was always some excuse about appointments coming up. He refused to give a date. I sent him a message asking when she was coming home. No answer.
I got really worried. Mum was saying "I just want to go home to my house and my cat." My brother and his de facto weren't letting her go. I found out they'd booked her for an ACAT assessment. They don't do those assessments in someone else's home so I rang and cancelled it. This must have made him very angry.
But the final straw was when I got a fake email which appeared to come from Mum. She doesn't use the computer any more - she can't see well enough - and she doesn't have an email address.
The email said "Don't ring me any more. You are only upsetting me. I don't want to go home. I am staying here."
I got recordings of Mum saying "I want to go home" and my brother in the background shouting "You're not going anywhere". Then I drove 300kms and went to the local police station.
They came with me to rescue Mum.
She was very glad to get home. I'm sure the police coming and Mum going home intensified my brother's hate for me. It also made my niece hate me as well.
I had some very nasty emails about the 'fact' that Mum showed no signs of dementia and that my brother would be getting legal advice about getting Power of Attorney. If she's OK, how was he planning to do this?
It's amazing how someone with dementia can hold themselves together for a whole week. Maybe it was because they did everything for her so she didn't have to think. She couldn't lose things, because they were there to look after everything.
So here I am, all on my own. But I do have my kids. They have seen the signs. They are 22 and 23 years old. My daughter saw the catastrophic reaction. My son has seen a few things happen. I can't expect them to look after Mum, though.
The loneliness of the dementia carer.
When I sent him an email asking him to help me with a problem, he rang her and read it out to her, telling her I was telling lies about her. It took three weeks to calm her down.
He never believed me when I told him that Mum has chronic kidney disease, or a serious blood condition (which has cleared up) or blindness caused by macular degeneration. I should have just stopped telling him things.
Anything I told him, he'd ring Mum and ask if it was true. She'd always say "No, I am fine, I've never felt better." Either she didn't recall the doctor's words or she didn't want to worry him. So this was more 'evidence' that I was a liar.
Recently Mum had a type of fit on a plane. She just fell unconscious in her seat with her eyes wide open. I thought she was dead. On landing, she was rushed to hospital. I thought: this is it. She's going to die. I really have to ring my brother (even though I'd promised myself I never would again).
So I rang him and he said "Is this another one of your lies?" I told him the name of the hospital. I was there, later, when he was speaking to the doctor and I could hear what he was saying. Was she really taken by ambulance from the plane? Did she really collapse? I heard the doctor say "She says she has a brother living nearby and he will come and get her tomorrow." I don't know what my brother made of that. She has no brother; he died three years ago.
I took her home the next day and my brother sent his 19 year old daughter down to see her. I don't know why he didn't come himself. But then he's only ever seen his mother a few times a year and he never bothers to ring her. He's never shown any interest in her welfare whatsoever.
I made an appointment for her with her own doctor, who has seen evidence of the dementia when she didn't recognize him or recall that he'd given her antibiotics three days before. In fact, he was the first and only health care worker to say to me, "Did you know your mother has dementia?"
My niece took Mum to the doctor. I just let her go, I was so exhausted. It turned out later, that she'd said I didn't want anything more to do with my mother and she was going to live in another city 300 kms away.
My niece took my mother away to my brother's house. I rang her on her mobile phone, which she can still use, and she told me she was having a brain scan. I rang my brother to enquire about this and he slammed down the phone. He did this a few times, on one occasion saying "I don't talk to liars."
I rang Mum a few more times. I asked her to call out to my brother and ask when she was coming home. The answer was always some excuse about appointments coming up. He refused to give a date. I sent him a message asking when she was coming home. No answer.
I got really worried. Mum was saying "I just want to go home to my house and my cat." My brother and his de facto weren't letting her go. I found out they'd booked her for an ACAT assessment. They don't do those assessments in someone else's home so I rang and cancelled it. This must have made him very angry.
But the final straw was when I got a fake email which appeared to come from Mum. She doesn't use the computer any more - she can't see well enough - and she doesn't have an email address.
The email said "Don't ring me any more. You are only upsetting me. I don't want to go home. I am staying here."
I got recordings of Mum saying "I want to go home" and my brother in the background shouting "You're not going anywhere". Then I drove 300kms and went to the local police station.
They came with me to rescue Mum.
She was very glad to get home. I'm sure the police coming and Mum going home intensified my brother's hate for me. It also made my niece hate me as well.
I had some very nasty emails about the 'fact' that Mum showed no signs of dementia and that my brother would be getting legal advice about getting Power of Attorney. If she's OK, how was he planning to do this?
It's amazing how someone with dementia can hold themselves together for a whole week. Maybe it was because they did everything for her so she didn't have to think. She couldn't lose things, because they were there to look after everything.
So here I am, all on my own. But I do have my kids. They have seen the signs. They are 22 and 23 years old. My daughter saw the catastrophic reaction. My son has seen a few things happen. I can't expect them to look after Mum, though.
The loneliness of the dementia carer.
Paranoia and the Cat
Mum has a cat. Her name is Cleo. She's had her for twelve years. Mum used to be sensible in looking after the cat. She installed a cat door so it could go in and out when it wanted to. She fed it twice a day and didn't fuss.
However, over the last four years, Mum has attached a lot of paranoia to matters relating to the cat. She has stopped letting the cat outside and keeps the cat door permanently locked. If the cat's not hungry and she offers food to it and it won't eat, she'll open a new tin of food and offer it that. Then she'll ring me and say, "Something is wrong with Cleo. She's not eating."
Last year the vet told Mum that cat is way too fat. It needs less food and more exercise. It won't get exercise as long as it's locked inside. Also, the vet told her to stop leaving huge plates of dry food around for the cat to nibble on throughout the day. But it didn't stop her. There are plates of food everywhere, and every day she tips them out into a plastic bag because they might be stale and gives it to me for my cats. The dry food she buys costs $57 per bag from the vet. It's meant to last about three months. It's gone in less than two weeks. What waste of money!
Sometimes I bring my dog when I visit and on the way to the back yard, the dog passes the cat, which hisses furiously. Mum says "Your dog is giving my cat an asthma attack! Get it out of here!" I try to explain the cat is angry and hissing, but she can't be convinced.
When I look in the fridge every few days, I find dozens of opened cans of cat food - small expensive ones - with a spoonful removed from them. If I don't check and get rid of them, in a couple of months they are all in there rotting, so I've learnt to sneakily make them disappear every few days. If they look OK, I take them for my cats.
Then there is the matter of plates. Mum feeds the cat on the plates she eats off. It makes me feel sick. I've tried making her stop, but you can't. You cannot convince a person with dementia that they are wrong. They are living in another world where everything you say is a lie, and everything they believe is the truth. If you try to convince them of some fact, then you are conspiring against them in some way, so it's best to say nothing.
But then even when she was younger, she'd feed the cats on plates from the family dinner set. She was even a bit paranoid for a while there, going outside at 2 a.m. going 'Puss! Puss!' because she imagined her cat was 'lost'. My father used to get so angry about it. She was only in her 40s then. She did get over that after a couple of years of being told off.
Now Mum keeps 'losing' the cat. She can't see very well, but she can't reason that the cat door is locked, all the other doors are locked and there is no way for the cat to escape. If she can't see the cat, she believes it is 'gone'. She starts to panic. The cat is usually under a bed, but she can't think to look in all the hiding places, she just panics.
Three weeks ago Mum rang me three times from 9.30 p.m. to tell me the cat was 'gone' and that I had to go and find it for her. I refused, and on the last call, I pulled the plug on the phone. I'm glad I wasn't there to see how angry she was.
I just hope she didn't ring her neighbours, as they are getting a bit fed up. One neighbour told me recently she visited five times in one day, each time to give the neighbour the same piece of news. She didn't recall the previous visits.
Around that same time, at about 9 p.m. at night, she believed someone was standing on her back porch and called a home handyman to come and look. A small shop-door alarm she has was being set off, possibly by a stray cat or the wind. She asked the handyman to disconnect the alarm and paid him $50. If this kind of thing keeps happening she'll be broke in no time.
But I think the biggest cause of her paranoia is that cat. Sometimes I really hate the poor thing.
The Catastrophic Reaction
In August my daughter, Mum and I went to Thredbo to see the snow. We stayed in a cabin in the bush. It was really nice and I thought Mum would enjoy it. The first night we lit the campfire then I went inside and asked Mum if she'd had her shower yet as I wanted to hang out the towel to dry. It had only been about four minutes since I last saw her and I was just reminding her to have a shower. But she got really angry and accused me of thinking she was dirty. "You think I never have a shower! You are nasty!" she shouted. I made the mistake of asking for the wet towel. She couldn't produce it, and got absolutely furious. She screamed and sobbed. She went into my room and lay on my bed crying and crying, saying "You hate me! You never believe me!" My daughter and I were absolutely dumbstruck. She wouldn't come out of my room and she wouldn't stop, so I said to my daughter, "I can't take this, I'm going to take the car into town and find a motel." My daughter said "Don't leave me alone with her! She's horrible!"
We went out for a long walk, leaving her there, and by the time we got back she was sitting at the kitchen table. She demanded to have a 'talk' with us about our terrible behaviour. My daughter managed to distract her by turning on the TV and changing the subject.
It was terrible, uncontrollable and frightening. I didn't know what had happened until I got home and found on the internet a description of a 'catastrophic reaction':
Some people with dementia overreact to a trivial setback or a minor criticism. This might involve them screaming, shouting, making unreasonable accusations, becoming very agitated or stubborn, or crying or laughing uncontrollably and inappropriately. This tendency to overreact is part of the illness and is called a catastrophic reaction.
Sometimes a catastrophic reaction is the first indication that makes relatives aware of the dementia. It may be a passing phase, disappearing as the condition progresses, or it may go on for some time. Some causes of catastrophic behaviour include:
. Stress caused by the excessive demands of a situation
. Frustration caused by misinterpreted messages
. Another underlying illness.
We went out for a long walk, leaving her there, and by the time we got back she was sitting at the kitchen table. She demanded to have a 'talk' with us about our terrible behaviour. My daughter managed to distract her by turning on the TV and changing the subject.
It was terrible, uncontrollable and frightening. I didn't know what had happened until I got home and found on the internet a description of a 'catastrophic reaction':
Some people with dementia overreact to a trivial setback or a minor criticism. This might involve them screaming, shouting, making unreasonable accusations, becoming very agitated or stubborn, or crying or laughing uncontrollably and inappropriately. This tendency to overreact is part of the illness and is called a catastrophic reaction.
Sometimes a catastrophic reaction is the first indication that makes relatives aware of the dementia. It may be a passing phase, disappearing as the condition progresses, or it may go on for some time. Some causes of catastrophic behaviour include:
. Stress caused by the excessive demands of a situation
. Frustration caused by misinterpreted messages
. Another underlying illness.
My Grandmother
I lived with Mum's mother for several years before Mum took her to live at her house. In her old age, my grandmother was still mostly the same person, but there were some worrying signs. There were personality changes. If she'd meet someone she knew on the street, she would start talking to them and never stop. You could see they wanted to get away but she wouldn't let them. If I took her to the solicitor, she'd hold the floor for up to three hours. In the end I'd have to say "Come on Nan, time to go," to get her away. She'd also ring the university and demand to speak to a professor of English. Then she'd ask him to spell a word for her.
At times when I tried to stop her making these phone calls, she'd threaten to call the police. I offered to move out of her house, but she asked me not to go. So I stayed, but she drove me crazy at times. She was never forgetful though.
My mother took her to live with her when she was 69, and she died aged 71 of a stroke.
Going back further, Mum's grandmother did not have dementia at all until three weeks before she died at the age of 86. Then, she started to act very strangely and paranoid. She was taken to hospital, where she died three weeks later. I think she also died of a stroke.
Mum's grandmother did have agoraphobia, though. She did not leave her house for 40 years. In fact she wouldn't go past the front door.
So sometimes I wonder if dementia is hereditary, but my mother's mother and grandmother did not have the same symptoms that she has, and not as severe.
At times when I tried to stop her making these phone calls, she'd threaten to call the police. I offered to move out of her house, but she asked me not to go. So I stayed, but she drove me crazy at times. She was never forgetful though.
My mother took her to live with her when she was 69, and she died aged 71 of a stroke.
Going back further, Mum's grandmother did not have dementia at all until three weeks before she died at the age of 86. Then, she started to act very strangely and paranoid. She was taken to hospital, where she died three weeks later. I think she also died of a stroke.
Mum's grandmother did have agoraphobia, though. She did not leave her house for 40 years. In fact she wouldn't go past the front door.
So sometimes I wonder if dementia is hereditary, but my mother's mother and grandmother did not have the same symptoms that she has, and not as severe.
When did I notice something wrong?
I'm trying to pinpoint when I noticed something wrong.
Five and a half years ago, there was an article in the paper saying that conmen were going around visiting old people and telling them their roof needed repairs. They offered to have a look and do minor repairs for $50, then they'd come down from the roof and say there were more holes in it than they expected, and ask for $200 and the amount would keep creeping up. In fact all they were doing was climbing around on the roof and getting paid.
These conmen visited my mother. She made a big fuss of them because they said they were unemployed and looking for work. She made them a cup of tea and fed them. They climbed around on her roof. They made holes in the garage roof by climbing on it and it leaked forever after. They told her they could fix her roof for $800. They took her to the bank and she withdrew the money. They then got the hose and hosed down the roof. That's all they did. She thought they were wonderful even when I told her they were con-men. She denied they were. She said her roof now looked 'beautiful' and was all fixed up. I wanted to call the police, but she got very angry and said they were good workmen and she'd disown me if I did anything like that. So there was nothing I could do.
Five years ago, Mum decided to sell her house and move closer to me. She put her house up for sale with an estate agent. The price was $430,000, with a $30,000 negotiation built in. $400,000 was the going rate for houses in her area.
Unfortunately a con-woman went to see Mum without the estate agent and told her lies. She said she desperately needed the house for her sister, who needed three bedrooms for her children. She asked if Mum would accept $300,000 as that was all she had. Mum agreed and lost $100,000. I was angry and devastated. I told her off, but she said to me "It is better to accept a lower offer from someone who comes with their chequebook than to wait for a higher price." She didn't understand that she was meant to let the agent do the negotiating. She didn't accept that she had been conned, even when the buyer put up a large 'For Lease' sign as soon as the sale was completed.
So I suppose Mum was around 78 years old when her judgment started to go.
Five and a half years ago, there was an article in the paper saying that conmen were going around visiting old people and telling them their roof needed repairs. They offered to have a look and do minor repairs for $50, then they'd come down from the roof and say there were more holes in it than they expected, and ask for $200 and the amount would keep creeping up. In fact all they were doing was climbing around on the roof and getting paid.
These conmen visited my mother. She made a big fuss of them because they said they were unemployed and looking for work. She made them a cup of tea and fed them. They climbed around on her roof. They made holes in the garage roof by climbing on it and it leaked forever after. They told her they could fix her roof for $800. They took her to the bank and she withdrew the money. They then got the hose and hosed down the roof. That's all they did. She thought they were wonderful even when I told her they were con-men. She denied they were. She said her roof now looked 'beautiful' and was all fixed up. I wanted to call the police, but she got very angry and said they were good workmen and she'd disown me if I did anything like that. So there was nothing I could do.
Five years ago, Mum decided to sell her house and move closer to me. She put her house up for sale with an estate agent. The price was $430,000, with a $30,000 negotiation built in. $400,000 was the going rate for houses in her area.
Unfortunately a con-woman went to see Mum without the estate agent and told her lies. She said she desperately needed the house for her sister, who needed three bedrooms for her children. She asked if Mum would accept $300,000 as that was all she had. Mum agreed and lost $100,000. I was angry and devastated. I told her off, but she said to me "It is better to accept a lower offer from someone who comes with their chequebook than to wait for a higher price." She didn't understand that she was meant to let the agent do the negotiating. She didn't accept that she had been conned, even when the buyer put up a large 'For Lease' sign as soon as the sale was completed.
So I suppose Mum was around 78 years old when her judgment started to go.
She was always a perfect mother
I have called this blog Lorelei, because I remember Mum playing it on the piano when I was young. She used to play the violin, too.
Mum had two children, me in 1952 and my brother in 1960. She was always very kind and rarely angry. She spent a lot of time with us and put a lot of work into bringing us up. Our father wasn't a bad person, he was a good provider, but he didn't have much time to spend with us. His whole life was his work and politics.
We had some lovely camping holidays and also holidays in our beach house at Huskisson. We had a large extended family of uncles, aunts and cousins, but it fell apart when my great grandmother died. She had kept everyone together.
Probably the most shocking event for my mother was when her father died in 1962. It was the end of her family's wealth. He was a businessman who owned properties. Due to death taxes, a lot of these had to be sold.
He had a huge funeral. I remember it well. Hundreds of people turned out. Hundreds more stood by the side of the road and watched the cortege pass.
After that, there was no extra money for my mother to spend on herself. There was only my father's income. We all felt a bit poorer. Mum's mother was sacked from her shop assistant job because the shop had to be sold. A few years later the family mansion was sold as well and my grandmother moved to a small house.
The death of my grandfather had a huge, terrible impact on all of our lives, and my mother still cries about it today.
Mum had two children, me in 1952 and my brother in 1960. She was always very kind and rarely angry. She spent a lot of time with us and put a lot of work into bringing us up. Our father wasn't a bad person, he was a good provider, but he didn't have much time to spend with us. His whole life was his work and politics.
We had some lovely camping holidays and also holidays in our beach house at Huskisson. We had a large extended family of uncles, aunts and cousins, but it fell apart when my great grandmother died. She had kept everyone together.
Probably the most shocking event for my mother was when her father died in 1962. It was the end of her family's wealth. He was a businessman who owned properties. Due to death taxes, a lot of these had to be sold.
He had a huge funeral. I remember it well. Hundreds of people turned out. Hundreds more stood by the side of the road and watched the cortege pass.
After that, there was no extra money for my mother to spend on herself. There was only my father's income. We all felt a bit poorer. Mum's mother was sacked from her shop assistant job because the shop had to be sold. A few years later the family mansion was sold as well and my grandmother moved to a small house.
The death of my grandfather had a huge, terrible impact on all of our lives, and my mother still cries about it today.
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