Dementia care the way forward

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My mom is 89 and has dementia. Looking at various sites I would say she is reaching the final stages. She still lives alone in a retirement Village but this clearly cannot continue. The question is do we place her in a home, does she stay with one of her 3 children or do we rotate her between us. We would love to hear from people who have experience with this, were they happy with the option they chose or would they do differently. We are in South Africa so there is no free care.

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    Hi Brian, I have quite a lot of experience of dementia, though none of it exactly the same as yours.

    As the only child, I was the sole carer for my mother, who had vascular dementia for the last nine years of her life. Three years later I took on the care of a dear friend (not much older than me) with dementia, who had no family in the country we were living in. And I had a lot of contact with my cousin when her mother (my mother's sister) was suffering from the disease.

    I'm wondering how a South African retirement village is set up. I could be wrong but I'm guessing that to mean that your mother rents her property, and that there's some degree of supervision - i.e. meals provided, a nurse visiting once a week etc. But my only knowledge of such places refers to the continental European country where I live, where things don't necessarily work the same way. Here, someone who was no longer coping in accommodation of this type wouldn't be allowed to stay if it was deemed that they were unsafe, or had become a danger to their neighbours - fire, flooding etc. Some of our sheltered accommodation units are attached to care homes, with the possibility of residents moving over into full care when the time comes (though it's not free).

    I'd strongly advise against rotating your mother around her three children. If, as you say, she's reaching the final stages of the disease, she'll already be very confused. Frequent moves will add considerably to that confusion.

    Also, I wonder how much you and your siblings really know about your mother's behaviour. If you know exactly what to expect, and just one of you is prepared to take this on - albeit with support from the others - then that would be the best solution. However, I find many people have a rose-tinted view of dementia - not helped by films like Iris. Fabulous performance by Judi Dench, but too many inconvenient details missed out. Of course, some dementia sufferers are placid and cooperative, but these tend to be in the minority.

    People with dementia can behave like small children. I'm sorry to be blunt, but are you or your siblings prepared to cope with finding faeces all over the house? And not just by accident. In my mother's case, I'm talking about in the fridge, the cutlery drawer, my bed etc. Not all dementia sufferers exhibit this behaviour, but it's not uncommon.

    Does your mother sleep at night? My mother did, for the most part, but I had to field endless complaints from my friend's neighbours about the noise she was making at night (she lived in the apartment she owned). When I went to stay in her spare room for a while, I found she was frantically running around the place all night, shouting, groaning and rearranging the furniture. She was also flooding their apartment on a regular basis. After three such floods in six months (one of which brought their ceiling down) another friend and I managed to persuade her to move into a lovely care home just across the street from where she lived.

    And how about aggression? Some dementia sufferers can become very aggressive and exhibit immense strength, in spite of their apparent frailty. This is a reaction to the fear they feel because they don't understand what's going on around them, but can nonetheless make life very difficult for their carers. My mother didn't, but my aunt was detained in a mental hospital for the last few years of her life after she turned up on a neighbour's doorstep brandishing a carving knife. And my poor friend, who was the sweetest, gentlest soul you ever met, suddenly flipped over into severe psychosis after an anodyne event in her first care home inadvertently recalled a childhood trauma. In the next few weeks, she pushed the head nurse down the stairs, tried to strangle me, and finally had to to be transferred to a grim psycho-geriatric unit after a violent attack on another frail resident.

    I'm not telling horror stories to sensationalise this, and please forgive me if you already know all this and are still happy to care for your mother in your own home. I didn't mean to patronise you. I just wanted to make sure you understood all the possible pitfalls before taking such a big step. Not all dementia sufferers exhibit disturbing behaviour. The mother of the neighbour I paid to keep an eye on my mother was one such - she sat placidly in front of the TV all day and slept like a baby at night. However, in my experience (which also includes 10 years as a nurse) this is the exception rather than the rule.

    To summarise - the ideal solution would be for your mother to live with one of her children, with the support of the others, providing you all fully understand what you might be taking on - and bearing in mind that your mother's behaviour could change abruptly and irreversibly once she's moved. I'm wondering whether you'd get some material support from the State for this, such as a carer's allowance or at least provision of incontinence materials etc. If you feel this would be too onerous, then the only other solution would be a care home. Presumably she must either be paying rent for her retirement village home or may even own it, so I'm guessing some funds would be available.

    Finally, you have my total sympathy. I've spent 15 years of my own old age caring first for my mother then my friend - who died just two months ago - and I know what this involves. And whatever the outcome, don't feel guilty. You are clearly trying to do the best for your mother.

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    • Posted

      Hi Lily,

      You are obviously a remarkable person. Thank you very much for taking the time and trouble to share this valuable information, it will certainly be very useful to us in making the best decision.

      Thank you very much!!!!

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    • Posted

      Brian, I hope you haven't been too put off by the exchange between Stefania and me. It's not that we're trying to scare you unnecessarily, just that we want to make sure you and your siblings know exactly what you might be taking on.

      I'm wondering whether you've been taking it in turns to stay with your mother for a few days at a time. This is a good way of getting a clear idea of her behaviour - particularly during the night. Even if she's "manageable" now there's no guarantee she won't change abruptly, and permanently, on moving in with one of you, but at least you'd have some indication of what to expect.

      I hope you can soon find a solution. Dementia is a terrible disease that stalks all of us as we age.

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    • Posted

      Hi Lily,

      Thanks for the info it has been most helpful. We also realize from your and Stefania's stories that even though my mothers dementia is well advanced, I think she still has a way to go to get to final stages. The fact remains she can no longer live alone. Between us we have agreed that my brothers house in Durban is most suitable as he has no stairs in the house, and the climate will be good for her as she gets cold easily.

      We are under no illusion that things will change over time but will address them as and when they happen.

      Thanks again for your input it has been extremely helpful!

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  • Posted

    Hello Brian,

    I am living with my 90-year-old mother (Waterford, Ireland), who has been getting more confused over te past year and has dementia.  We have a carer in the morning to wash and dress her and one in the evening and the rest is up to me, as she refuses to go into a home.  As it is her house, she cannot be forced.  It is not easy and, although I am entitled to some respite care for myself, she then has to go into the old age hospital for the week which does not do her any good.  As Lily said: any change can confuse them even more.  In my mother's case she gets verbally aggressive saying the most horrid things.  At night she has been ranting, frightening me and our dogs so that I've locked the dogs in my bedrooom with me.  I always know when she's bad when she's naked from the waist down.  Just last week I experienced the nightmare from hell, when she was in such a mood and ripped down curtains, ripped things up and evetually locked herself in the sittingrooom.  I had helpers in the house, Caredoc, 2 ambulance crews, police, the locksmith and eventually her GP, who finally persuaded her to take calming tablets, which thankfully she is taking.  So from experience, like Lily, I can say that is is not easy.

    Wherabouts in South Africa do you live?  I lived there for 13 wonderful years, in Bethlehem, Pretoria and Pietermaritzburg - lovely country.

    I wish you much luck, and patience, with looking after your mum, and do make sure you look after yourself too!!

    Stefania

     

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    • Posted

      Stefania, so sorry to hear that you're going through all this. I know what it's like. I have to say though that I'm blown away by how you've opted to live with your mother throughout. I'm afraid I could never have done that, I would have gone completely crazy. I lived 200 miles away, but was still constantly back and forth, and fielding endless phone calls every day.

      I hope you've managed to maintain some remnants of your life. That was difficult for me, as all I could do in the end was temporary typing work. Even then I kept getting into trouble with the agency because of constantly having to drop everything and run home. I lost my social life too, as I could no longer go out in the evenings without constantly answering the phone. At first, I tried telling my mother repeatedly throughout the day that I would be out for a few hours and not able to take calls, but that didn't work. She wasn't intellectually impaired by her dementia, so she would keep calling the police to say she was worried, hadn't heard from me for months(!) and didn't know where I was. I twice got home towards midnight to find the local police on my doorstep - and our police aren't as sympathetic as the British Bobby! In the end all my friends drifted away, and I had to rebuild my life practically from scratch at the age of 62, after she died.

      Fortunately, it hasn't been nearly as bad while taking care of my friend, mainly because she was in a home for her last three years, so at least I didn't have to worry she'd set fire to the house or something. The first few years, when she was still living alone, were a nightmare of anxiety, as she was doing crazy things with combinations of electricity and water. I also managed to keep my demanding voluntary job going during all this time - except for her last few weeks, when I had to take leave of absence - so I've had something to come back to.

      I'm glad to hear you're at least getting respite care and have your dogs to keep you sane, and I hope you've managed to keep up with friendships.

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    • Posted

      Hi Stefania,

      Thanks your situation is difficult and I commend you for what you are doing for your mom.

      We have decided my mom will live in my brothers home in Durban. My house has several sets of stairs, both in the house and in the garden which could be dangerous for hat as she is already unsteady on her feet.

      I live in Nelspruit, it is a fantastic part of the country.

      Thanks again for taking the trouble to respond

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