My mother has Alzheimers Disease

I have changed the name of this blog from "My mother has dementia" to "My mother has Alzheimers Disease". The reason is, that previously, the specialist had said it's most likely vascular dementia. It wasn't progressing much and her memory wasn't too bad. She could pass the mini-mental-state test with flying colours. She was mainly just paranoid.

But the last few months things have got worse. The specialist says it's now most likely both kinds of dementia, but definitely Alzheimers now.

The deterioration over the past few weeks has been noticeable and shocking. I had thought she'd coast along for the rest of her life being more or less the same, but things have really taken a dive and almost every day, I notice a skill or ability she no longer has.

When I visited her in the nursing home where she's having respite, last weekend, I found she'd broken her mobile phone into bits and put all the bits in various drawers. I managed to find them all and put it back together.

Until a few weeks ago, she knew to press number 2 to get me or 3 to get my daughter on the phone. She can't do that any more. Until a few weeks ago she knew how to plug in the phone charger -not any more.

She's losing the lids off everything - makeup, face creams, toothpaste, and she's pulled the nozzle off the expensive bottle of perfume I left for her and lost it.

For the past three or four weeks she hasn't been able to find and put on a bra, so if no-one dresses her, she goes bra-less. She basically can't find any of her clothes and needs someone to stand there and pass her things. At the nursing home, they don't dress the residents as it's only hostel care. So I've found her dressed in some very odd combinations, probably chosen by the Alzheimer lady in the next room.

She's started keeping her shoes in her undies drawer or other parts of the wardrobe, and she almost always puts her shoes on the wrong feet.

She gets her clothes in a terrible mess, pulling them out and then throwing them back in at random. She won't put her clothes out to be washed, but she was the same in the nursing home where she lived for 8 months last year. She believes the clothes won't come back and so she hides them.

A few months back, she wouldn't do any of these things except the hiding dirty clothes thing. The deterioration is so noticeable and such a terrible shock when I wasn't expecting her to ever deteriorate suddenly.

Physically she is as fit as a fiddle and can walk for miles. But mentally she is racing towards death. I can see that she will reach Stage 7 very quickly, even though the mean duration of the 6th stage is 2.3 years.

I'd say at present she's in late Stage 6. The information on the internet says that once they lose the ability to dress without assistance, they lose the ability to independently maintain cleanliness in toileting. This has certainly happened.

She has absolutely no idea where she lives - the suburb, the street, completely blank on those questions.

She started putting her clothes on inside out and backwards about five weeks ago. One day I found her in the bathroom after her shower, trying to put her legs into a skivvie. I have to take away her day clothes now - which she strongly objects to - and only leave the pyjamas in the bathroom, otherwise she'll put back on not only her pyjamas, but everything she's worn that day, including the dirty underpants.

She puts the toilet paper in strange places - on the floor, in the bathroom basin, in the bin. If I try to help her and remind her to wipe herself, she'll hold up the dirty toilet paper and ask me what to do with it. If I leave her on her own, she'll stand up with the dirty toilet paper in her hand and then smear it all around the toilet seat. I've gone through bottles and bottles of bleach.

I have read that urinary incontinence is the next stage.

Quite often she does not know who my daughter is, and she didn't know who I was on a couple of occasions. Her speech is OK, but all she wants to talk about is cats.

Stage 7 is so horrible I hope she doesn't live that long, but unfortunately, she's in such good health, she probably will.

I never thought it would come to this. I never thought, because not one other member of her large family ever fell victim to such a terrible thing. All her aunties except one, fell victim to an early stroke. Her own mother died at 72, with some minor mental changes, of heart failure. The aunt who lived to be over 90 had all her marbles when she died. The men in the family died early of lung or heart conditions, or cancer, well before they could develop dementia. Her brother died of cancer at 78, her father of a heart attack at 58. Her maternal grandmother died at 87 following a very short - 3-week- episode of mania. Before that, she was spending her days betting on the horses and listening to the radio. So there wasn't too much wrong with her. Her paternal grandparents died aged 34 and 54. No dementia there - but had there been modern medical assistance, they may have lived long enough to suffer this, who knows. I know the medical histories and causes of death of her great grandparents as well.

Elderly family members in the 1950s - and not one of them with dementia.

What do I do, what am I to do?

I don't know what to do. After Mum's latest rampage, the damage to the car door, the broken window, the upended furniture, the broken door knob - what do I do? 

Virtually everyone is saying, "Put her in a nursing home and leave her there. You can't manage this behaviour." Well, we haven't even tried risperidone yet. Shouldn't we try everything first, before putting her in a high-security gaol?

She's still in respite care. They aren't having much trouble with her, other than her wandering out of her room in the late afternoons and getting lost, wandering into other people's rooms and demanding to ring me all the time. When she rings, she asks me when I am coming to get her. I tell her I'll see her on Saturday.

I think she's being a bit of a pest to my aunt (Dad's sister) who is in there due to bad arthritis, not dementia. My aunt wants to look after her and entertain her but I think she'll soon tire of that. I hope Mum is never nasty to her. At first she wanted to use her phone all the time so she had to say it was disconnected or something, to stop her. Now she rings from the nurses' station.

Last Saturday I took her to the shopping centre. I'm not bringing her home - I'd never get her in the car to go back again. She was pretty awful at the shops. She just kept saying she was miserable, wished she was dead and why didn't I take her to see her cat. She ranted about changing her will so I won't get anything since I'm so nasty to her, allegedly.

The cat is the very thing I want her to forget. I can't stand her obsession with cats any more. I'm hoping maybe three weeks in the pokey will cure her of obsessing over real and imaginary cats. 

I think if she were in respite care for longer, she might decide these people weren't strangers requiring good manners and courtesy any more and start being just as nasty to them as she is to me and everyone here. I think maybe she's not too much trouble because she still has the idea that you have to be polite to strangers.

I rang the government advisory service on dementia behaviours. Their advice was that they don't think this behaviour is manageable at home. But what if the behaviour can be stopped with anti-psychotics?

If Mum goes back into the nursing home system, it will be a financial disaster for both of us. They will take all her money (the small amount left will have to go on her private health insurance) and I won't be able to afford to even take her for a long drive, without her helping out with household bills and petrol. There will be no more holidays - ever. I don't get enough casual work to take anyone on a holiday. I will be back to living in poverty most of the time and the nursing home will be wanting me to give them money for day trips and wanting things purchased for her (the last thing the other nursing home wanted me to buy her was a walking stick - which she certainly does not need and which I could not afford). 

I guess I will have to have her back here at least for a time, even if she's going into full time care. During that time, I hope to be able to give the risperidone a trial. 

What a choice. Incarceration in a miserable place for life, or possible death from risperidone in a few months. I know I would choose the shorter life and stay home. I think she'd feel the same. It might work, or it might not. Valium and Ativan had absolutely no effect on her psychotic rages. So I can only hope.

Mad as a cut snake, Mum jumps out of the car and a psychotic episode

What a terrible time we have had the last few days. On Friday, she was particularly crazy, her eyes looked odd and she went deaf. The doctor couldn't see any wax in her ears, but the nurse syringed them out just in case. Still deaf. The doctor said she probably won't regain her hearing. How suddenly did that happen! I'm not getting her another hearing aid. She just won't wear one - waste of $600.

The doctor thought maybe she'd had a small stroke, so he wrote a letter for the hospital and told me to take her up to Casualty.

On the way, in peak-hour traffic, at 80 kph, she suddenly decided to jump out. Without warning, and in one swift movement, she undid her seatbelt, opened the door and out she went. Half-way out, I grabbed her by the jumper, while swerving to try and miss the telegraph poles, the passenger door swinging in gale-force winds, and trying not to hit any of the other traffic. The door hit a pole and was damaged.

I put on the hazard lights and stopped the car, got her seatbelt back on and shouted at her, "What the hell do you think you're doing?" "I know what you're up to," she said. "You're going to dump me at that hospital." I realized it was after 3 p.m., when the paranoia kicks in.

The traffic in King Street where she jumped out of the car

I drove around the block and found somewhere safe to stop. I wasn't taking her anywhere in that state. My car doesn't have child-locks. I dialled 000 and requested an ambulance. By the time they arrived, she'd got out of the car and was headed up the footpath.

The paramedics clearly were not happy to have been called. They glared at me angrily and asked what was going on THIS time, referring to LAST time they were called to my house, took Mum to hospital, only to have the doctor make them bring her back home again. A waste of their time.

They persuaded her to get in the ambulance and I followed them to the hospital. Fortunately they agreed to keep her overnight and I was able to go home and rest. MRI scans showed up nothing and all she did at the hospital was sleep, something she won't do at home until she's rampaged for several hours and exhausted herself.

On Monday night, the day before she was to go into respite care for 3 weeks, she went on the maddest rampage yet. I managed to get her to shower, gave her 5 mg of Valium (which had no effect whatsoever) and gave her dinner - which she refused to eat. She'd been at Day Care all day, then on the Twilight Bus Tour, arriving home at 5.30 p.m. After all that, I'd have been exhausted - but not her. She was just getting wound up.

She was going on about cats. There's a cat out on the road. Where's my cat? (Which one? There are five??) I want my cat to sleep on my bed. Let me get outside!

By now, all the cats hate her, even the very old one that now has only one eye, that she's had for 15 years. They all run from her. They hide under the beds, they race out through the cat door, they run out into the yard and under the house, anything to get away from her.

She says my daughter and I have made the cats frightened of her. Or she'll say that the cats must be sick, or injured - that's why they're running away. And so she gets herself in an even more paranoid state over it.

On Monday night my daughter went down the back to her flat and I locked myself in my bedroom. I kept reminding myself, just one more day and she'll be in respite. I just have to survive tonight.

Normally I lock the doors so she can't go outside and get hurt in the dark. But this time, I decided to leave them open. After a while it went quiet so I went to investigate out the front. She'd gone down the street in her pyjamas (no shame!) and was putting spoonfuls of chocolate pudding under each telegraph pole. I watched her. It was nearly dark. When she came back, I asked what she was doing. Putting out food for starving stray cats, she said. I told her that chocolate can kill cats and dogs. She didn't seem to care. Probably thought I was lying. She came inside and insisted on leaving the front doors wide open 'so the cats can get in'. I let her go and locked myself back in my room.

After a while it went quiet again. I thought maybe she'd gone to bed. I stayed in my room quite a while, then went out and looked. She was gone.

I went out to the footpath and there she was at the bottom of the street, talking to two Macedonian ladies, whose English wasn't too good. They saw me and brought her up to my front gate. They told me she was lost. Well, this is the first time she has ever 'wandered'. I knew that wandering was one of the major signs of Alzheimers, but she's never done it before. She's gone for walks and come back. I've never had to lock her in. This is a whole new symptom - wandering.

Back inside, she went into a psychotic state, with delusions, hallucinations and paranoia. I locked the back door, but not the front, she was so frantic to keep looking outside for cats.

I went back in my room. She refused to go to bed. I could hear her mumbling about people outside looking in, and how they could murder us all. I could hear her going 'Puss-puss-puss, where are you?' Poor cats!

She broke the back window (second time this week) trying to get outside to imaginary cats. She broke the handle on my bedroom door, trying to get in, presumably to whack me for not co-operating. She went in the spare room and threw things everywhere including the top of the dressing table, the curtains and curtain rod.

Around midnight she finally went to bed and fell asleep.

Someone once told me he was 'terrified' of his mother who lived at home with Alzheimers. I told him to snap out of it and stop being stupid. Now I know it is possible to be terrified of your own mother when she's in a psychotic state.

If I had gone out of my room, she would have attacked me, for sure, and in defending myself, I may have hurt her. This is why I stayed in my room. I considered calling the police, but here in New South Wales, if you call the police to a mentally ill person, there's a good chance they'll shoot them dead.

What the gerontologist said about Risperidone and other stuff

Mum has really deteriorated mentally recently. I decided to take her back to the gerontologist for further advice. 

I noticed she doesn't seem to be swallowing properly. I thought the swallowing thing was confined to the very last stages, but she seems to have it already. She chews and chews, tries to swallow, coughs, splutters and runs to the bathroom to spit it out. Then she abuses me over my 'horrible cooking' and the 'cheap cuts of meat' that I buy. But it happens no matter what she's eating. I'm really not sure if it's an excuse to have a go at me, or if she genuinely is choking. The gerontologist wasn't sure, either. 

She won't drink anything. She keeps demanding cups of tea, all day long. I sit her down in front of the tea. Often I'll try and stay there and keep saying "Take a sip. Keep drinking." But it doesn't work. Usually it's the thought of a cat that takes her away from the tea. Where's the cat? Is my cat inside? It's freezing out there. The cat will die of cold. And off she goes. I haven't seen her drink more than a mouthful of tea in weeks. She went to the dentist last week and he said her mouth was dehydrated and I should see the doctor urgently.

Tea was her main source of hydration. She used to drink it all day long. Now, she won't drink tea, she won't drink coffee, milk or water. 

The gerontologist thought maybe this refusal of sustenance is the beginning of something. We'll just have to wait and see. 

He indicated that treatment from now on should be palliative. He wouldn't advise operating if she had cancer, for example; but he would advise setting a broken leg to relieve pain. He's definitely against feeding tubes. So am I. 

He also said that we should try a small dose of risperidone. I've been against it in the past, when she seemed to be enjoying life, when she was able to make herself cups of tea, go for walks around the block, take herself to a shop and buy something. But I'm not resisting it now. I think if it makes her less afraid and less frantic, then it can only be a good thing.

Risperidone is not recommended for use in dementia. It's dangerous for elderly people. It predisposes them to strokes or heart attacks. But it also may calm them down, and may even give her a few more months at home. Normally it's a drug that's used to treat schizophrenia. Whatever Mum has, it's a lot like schizophrenia. I'm surprised people haven't said more about the similarities between Alzheimers and schizophrenia. A cure for one might lead to a cure for the other. 

If something doesn't change, she'll be back in a nursing home by Christmas. It can't go on like this. 

Calling for help

We have a 24 hour emergency Alzheimers nurse available. I've just had to call for help. Mum has been berserk this afternoon and tonight. She had to see the geriatrician and I think it unhinged her. She was already tired from being at Day Care and we didn't get home until 7.30 p.m. Getting her into the shower was a nightmare. She kept running out of the bathroom shouting "I want my cat! I'm not going in there until I see my cat inside!" The cats sleep OUTSIDE on the veranda. Bringing one in doesn't help - it just makes her more silly, because they're all terrified of her and run away. Then she believes they must be 'sick' and must be caught and taken to the vet. 

After her shower, she started running through the house looking for cats and shaking the doors trying to get out. I sticky-taped all the light switches so she couldn't turn on lights. That sometimes keeps her in her bedroom, but not tonight. She managed to find her way around, throwing a basket of clean washing all over the place (deliberately) and pulling pictures and crucifixes off the walls and curtains off the windows. She threw everything she could find on the floor.

After that she said she could see lights in the back yard, and there were people down there creeping around. Next she believed all the doors were open and she couldn't shut them. These people could get in. By this time I'd locked myself in my bedroom and turned up the music so I couldn't hear her rantings.

I've just had enough tonight. I'm sick and exhausted. I can't take another second of this and I'm looking forward to help arriving. 

I will kill myself before I will agree to go insane before I die, I really will.