Mother diagnosed

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Fresh Mint
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Mother diagnosed

Post by Fresh Mint » 11th Jun, '08, 12:04

For a couple of years now, we've been led by doctors to believe my mum was suffering from the first stages of Alzheimers, but after a few months of treatment and check-ups in Britain, it now seems she has something called "frontotemporal dementia".

The good news is that we have a proper diagnosis at last and that is in Britain where she can be cared for a lot better than in Zim. The bad thing is that is that the prognosis is generally no more than 5-10 10 years after diagnosis and there is no treatment.

Has anyone heard of this before? Apparently it is often misdiagnosed as Alzheimers as many of the symptoms are the same ... forgetfullness, repetitive behaviour etc. With FTD, however, there is much more inappropriate behaviour (she has taken to walking around in her undies and the odd bit of shop lifting).

Now the guilt strip starts about permanently committing her to a home ...

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Re: Mother diagnosed

Post by Tack » 11th Jun, '08, 12:19

I am really sorry to hear this Minty. I can't offer any help with info re the particular condition but I do suggest you don't beat yourself up about the 'home' issue. I guess it depends on a lot of different factors as to whether a home is a good idea sooner rather than later, mainly as to the whether she has a partner or children who want to care for her? There are places that can take couples. From my own family's experience with dementia it seems important that the person lives in the environment long enough while still well enough to get thoroughly familiar with it, this way the place and routine might not appear confusing on top of all the other confuddlement.

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Re: Mother diagnosed

Post by BFG » 11th Jun, '08, 12:21

Mate - I have no idea, but my first suggestion would be to contact a specialist rather than ask on a forum like this. Unless you are sure we have a range of specialists to hand.

I certainly wouldn't go down the "guilt" route. You know what does or does not need to be done. Good luck.

PS - Why not see what his family did for Spike as he seems to fit the bill...

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Re: Mother diagnosed

Post by Fresh Mint » 11th Jun, '08, 12:34

Actually not really asking for advice, just wondering if anyone had heard of this before.

We are getting expert advice and, as Tack says, most of it is get her into and used to care sooner rather than later. She hasn't been particularly independent for the last few years. Zimbabwe is a really tough place for an elderly person to be -- even with my brother and sister and their families living around the corner.

Initially it looks like we'll be putting her in something called "sheltered accommodation" in UK, which is a whole lot of apartments within a gated community and offers the residents a degree of independence but at the same time they have daily professional care. When her condition deteriorates, she moves within the community to something more akin to a private room in a ward.

We'll try to visit as often as we can, but the reality is we will all be living a long way away.

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Re: Mother diagnosed

Post by BFG » 11th Jun, '08, 12:41

If it is any consolation FM, I have seen some of these gated communities (my Mother is elderly) and some of them are excellent.

Good luck Big Fellah.
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Re: Mother diagnosed

Post by Kooky » 11th Jun, '08, 12:50

So sorry to hear that, Minty.

I don't know for sure but the behaviour sounds similar to a friend's Mum; the first year he was in Sg - well he really was hardly in Sg as he had to keep going back to sort things out as his Mum was deteriorating fast. Wandering up the road in her nightie, accusing the neighbours of stealing from her, etc. He had to find a home for her as she really did need professional care.

I can put you in touch with him if you'd like to swap notes, just let me know. You'll have heard of him, if not met him, but I don't feel I should name him here.

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Re: Mother diagnosed

Post by Burbage » 11th Jun, '08, 12:56

We used to call it old age, but now we have names for it. The fact is ha the more we are able to look into the workings of a human being, the more we are able to give nams to all the various facets of old age. I'm not sure whether it's a good thing or a bad thing. I guess it is good to know roughly what is going to happen so that family can be prepared for the various symptoms and eventual passing of their loved one.

Neural degeneration is a common cause of aged death. Where it is in the brain will allow the specialists to advise you as to what behavioural changes to expect in your mother. In the end, time catches up with us all and we all die of something. I had a great aunt who suffered dementia (there was no accurate diagnosis in her day) and it seemed to me, at least, that her lack of awareness of her own mortality at the end was a blessing rather than a curse.

Good luck.

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Re: Mother diagnosed

Post by slinky » 11th Jun, '08, 13:30

Sorry, FM. It's tough enough to have an unwell parent, but even tougher to be so far away while it's going on. I don't have any direct experience, but Tack's advice about getting her familiar with new surroundings ASAP sounds like the way to go. The main goal at this point has to be her safety overall. My mother and her sister had to put my grandmother in a home for a few years and while it wasn't ideal, there wasn't another viable option at the time. They visited often and my grandmother did fine with it overall.

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Re: Mother diagnosed

Post by azzam » 11th Jun, '08, 14:05

Do you know anyone in the UK who will be able to check in on her regularly and feed back to you? By that, I mean someone who is a friend you trust and not connected to the community staff? It won't feel good not being able to visit her regualrly, so finding someone to fill the gaps for you might ease your mind a lot.

I have a friend who is in a similar community and very comfortable and independent. She agitates on behalf of the other clients there, to make sure they get the care and supervision they need.
I don't wish to make you worry more, but, for example, their night security in the independent units doesn't have medical expertise and one lady spent the night cold and naked recently, rather then let the male security guard help her.
My Dad, who went to a home in New Zealand for respite care, had his medication thoroughly screwed up by the staff.

It's hard on you no matter how you do it. Lots of love. x
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Re: Mother diagnosed

Post by Fat Bob » 11th Jun, '08, 16:04

Get her some help now. One of the big questions about the treatment of Alzheimers patients is that 10-20 years ago, it was poorly treated and therefore any drug could have made it onto the market, and made some osrt of difference.

With the current care and attention that now does go on into these patients (and others showing neurodegeneration of any sort), then the the effects are much slower to occur and it also allows the patients to get into routines which they might not have living on their own, even with family members around the corner.

It also reduces stress and strain on the non-paid for carers, especially the family.
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Re: Mother diagnosed

Post by Dancing Queen » 30th Jun, '08, 10:26

Hi FM

So sorry to hear this. I have done a lot of research into Long term care issues, particularly in the UK, and I would agree with FB. Do your homework and find a home that allows some independence but can offer good medical care and functional therapy. Sadly some homes still abuse sedatives to keep the residents quiet and 'out of trouble' rather than trying to occupy them. Speak to the doctor at the home and find out how often he/she visits, reviews medication etc and if he is just an ordinary GP or has any geriatric specialist training. Ask about special treatment for the cognitively impaired.

Shortlist two or three and then spend some time in them - just observing how the carers address and handle the residents. Do they engage with them(or at least try to) even when they are badly impaired? Ask about therapy sessions and go and attend one - just to see what they do. Chat to the carers and therapists - listen to how they talk about the residents.

Let me know where you will be looking for one and i might be able to help. I still have contacts there.

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