Dementia care the way forward

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.

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