I am a live in caregiver for an 86 year old possible dementia patient

Hi Lily,

Thanks so much for your advice. I have included her children and grandchildren, her husband as well. I am also keeping a journal.

I did try talking to her when we were alone and got nowhere. The problem is that her husband knows but just doesn't choose to do anything about it. Unfortunately I believe it's going to take a catastrophic event to get their attention.

Sadly Lynn, I think you're right about the catastrophic event. This is the kind of thing that often brings increasing dementia into focus, both with the family and health and social services. It's most commonly a fall, but is just as likely to be a hypoglycaemic attack or even a diabetic coma in the case of your lady. I'm assuming you have enough medical knowledge to differentiate between the two and give first aid for the initial signs of hypoglycaemia.

There's actually not much you can do about this situation, apart from keeping the wider family informed (preferably in writing from time to time) as to the evolution of the lady's dementia. Even if this doesn't help her, it will cover you against possible recriminations from the family in the event of something going badly wrong.

I don't think there's much point in putting pressure on the husband. As you say, he knows anyway and doesn't want to do anything about it. This is understandable. They've presumably been married a long time and have grown old together, and he doesn't want to lose her. However, if they can afford a live-in caregiver, that suggests to me that money isn't a problem, so if it came to it they might even be able to move into the same home together. (I'm assuming he's about the same age as her.) And as already mentioned, there's also the possibility that he's starting to develop cognitive problems.

As I'm sure you know, this is only going to get worse. The time will come when you'll need additional help in caring for this lady. People with dementia can sometimes lose motor skills over a very short period of time (which happened to my friend) in which case you wouldn't be able to manage washing, dressing etc. without extra help. I'd suggest including observations on this front in your journal too.

Finally, I wonder whether you are authorised by the family to talk to her doctor. If you are, it might be helpful to try and arrange to talk to him/her too. However, I know from bitter experience with my mother just how good dementia sufferers are at appearing completely normal as soon as a doctor, nurse or social worker appears over the horizon!

I hope you're getting adequate time off and aren't under too much stress yourself. I really understand the demands caring for a dementia sufferer puts on your energy and patience, even without the extra emotional burden of dealing with a family member or close friend. Please don't hesitate to contact me again if you want to, either by posting here or sending me a private message. To send a PM just click on the little envelope icon under my avatar. PMs via this site don't contain viruses or expose the email address of either party.

Thanks so much for this. Especially about their ability to appear completely normal at times and around her Dr. as well as certain family members. She's at the point that she sleeps most of the day or just sits in a chair watching old shows on TV. She doesn't ever want to be in social situations but will allow her great grandchildren to come over to swim but only occasionally. I guess the family has just accepted that this is her fate. I just can't allow it to be mine as well.

It definitely sounds as if your lady is slipping gently into dementia. But at least she's not aggressive. This can become a problem as they get worse and have more and more problems understanding other people's motives - e.g. a carer helping them to wash or dress etc. My mum never got aggressive but both my aunt and my friend ended their days detained in locked psychogeriatric units because they posed a danger to those around them, as well as to themselves.

I'm wondering whether she's seen a gerontologist or neurologist and received a diagnosis. Maybe you could suggest this to her family? Alzheimer's can be diagnosed via a combination of an MRI and the specialised neuropsychological test they do these days. An MRI or a CT scan will also show up ischaemic brain lesions (poor blood supply). If she gets a firm diagnosis of Alzheimer's she could be prescribed donepezil, which is specific for this condition. However, it's not without side-effects, isn't always effective, and in any case only slows down the condition. If there's another cause for her dementia, such as vascular (poor blood supply due to mini-strokes) there's no specific treatment at all.

Whatever the cause, gentle attempts at mental and social stimulation will slow down the progress of the condition, but I know how difficult this can be if the person resists all attempts at stimulation.

I guess it all depends what you feel you signed up for. (I've a hunch you're fairly new in the job but I could be wrong.) If it was advertised as a "lady's companion" post, you may have been deceived. It also depends on your qualifications and training. If she's going to be left in charge of her own insulin injections, she absolutely needs to have someone with some medical training around - a nurse or qualified care assistant. And as her dementia progresses, she'll need increasing help with personal care. Incontinence will also become a problem - and probably sooner rather than later.

I'm afraid you might indeed do well to cut your losses and get out now if you don't feel you can cope with all this.

Hi Lynn,

I forgot to add that I hope she gets regular check-ups and blood tests for her diabetes - in addition to the finger-prick tests she's probably doing herself. There's a possibility that her increasing sleepiness is due to slowly rising blood sugar levels. The family needs to make sure that her doctor is on this one, otherwise she could gradually slip into a diabetic coma.

I do have a medical background and I have been with them for over two years. She has had minimal testing and refused to pursue more in depth testing and we have had meetings with one of her Doctors but there has never been any follow through.

When I took my nurses training several years back, dementia was not something we received a lot of exposure to. I can take care of any medical issues that may arise just needed someone that had actually been through this to talk to.

Thank you so much!

Glad to hear you have the wherewithal to cope medically, Lynn. I trained as a nurse too, when the dinosaurs walked the earth, did it for 10 years including 18 months in a neuro unit, where I did a 6-month course. On the neuro course we learned a fair amount about dementias related to neurological conditions - Creutzfeldt-Jakob etc. - but only really about the underlying pathology, not management. We only got them in the acute stage anyway, they were sent off somewhere else after diagnosis. Seems to me that nurses should learn more about day-to-day management of diseases of old age, particularly these days when we're all living longer.

I agree - coping with dementia first-hand gives a better insight into dealing with it.

I have to say I wouldn't want to be in your shoes, presiding over this slow-motion train-wreck!