Advice on dealing with demetia

  Al94 20:33 20 Sep 2009
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Folks, looking for an opinion - perhaps based on other's experience. My 88 year old mother has been in a care home for 15 months. She has dementia which presents itself in the form of confusion, very poor short term memory and extreme anxiety. She knows us and in many respects is still quite lucid but the anxiety has to be controlled my medication and I am very satisfied that the home manages her condition well and give her a good quality of care. In the early months she fought against being there which was very difficult for everyone but now she seems more content and accepting of the fact that this is now her home and seems to have a good rapport with many of the staff and some other residents. Much of this would be down to the successful use of appropriate medication. We visit her at weekends, she always liked to get out for a run in the car and we have a number of venues not too far away where we take her for a walk and have afternoon tea. Increasingly, as her mobility has slowed, she still likes to go out, but it is more difficult for her to cope with, getting ready to go out makes her anxious and while she still appears to enjoy being out, she is often tearful and anxious when we return. There is very little normal conversation with her when she is out, it seems she spends her time struggling to recall events of the past asssociated with where she is. It is as if she is quite happy in her own way when left to potter about the home but we are the remaining link with the outside world and I am struggling to decide if we are doing more harm than good taking her out of the environment she is comfortable in or if we should continue with outings for as long as she is physically able. If anyone has been down this road with a relative I would be keen to hear their views.

  peter99co 20:43 20 Sep 2009

Get in touch with a Dementia Society in you local area and you will find a lot of support.

  Forum Editor 22:52 20 Sep 2009

will be far happier and less anxious in a peaceful, calm environment. Loud noises, other people getting snappy, and anyone making sudden movements - all of them add up to increased tension levels for someone with a dementia.

If a dementia sufferer is feeling tense, exercise can help to ease things, so going out for walks is a good idea, provided your mother is up to it - let her be the one who makes the decision.

Routines are helpful, because many dementia sufferers feel insecure - a familiar routine can be a great comfort - and as time passes these routines may help her to know which part of the day she's in, and what will happen next. All that will help to reassure her.

You'll be the best judge of her mood, and you'll have to play it by ear - she's your mother, and you know her best.

  Forum Editor 22:54 20 Sep 2009

that my comments are based on personal experience of a family member's dementia.

  skeletal 23:01 20 Sep 2009

First my sympathy. The various forms of dementia are devastating, and outside of the circle of those who know about such things, you will probably not get much understanding at all.

Your post describes a familiar pattern. It is normal for the person who is put into care “to want to go home”. This will cause them anxiety and they can get very upset. They may try to escape, and sometimes succeed (they can be extremely clever at devising ways to get out). The panic this can cause can be imagined as the police and social services get involved as it is classed as a serous incident. The poor sufferer will of course not have a clue as to the fuss going on around them and are very likely to get completely lost, even in an area they ought to know well.

Others may actually become violent and attack carers and relatives. All due to the confusion and anxiety of “wanting to get home”.

Eventully though, all this will hopefully pass and they become more accepting.

Depending on the advancement of the disease, normal conversation will cease. The sufferer will increasingly ramble and repeat themselves; sometimes within seconds of saying something, they will say the same thing again.

They also “time shift”. They mix together an event from 50+ years ago with something a few minutes ago. Long term memories are surprisingly well kept, but short term disappears.

The control of various bodily functions cease to work properly, and I am totally in awe of the marvellous band of carers earning little more than a pittance who ceaselessly clean up the ensuing mess.

Eventually, they will no longer recognise relatives. They will still try to communicate, but you will just be “someone” rather than son/ daughter etc.

As to taking residents out from the care home, this needs to be considered on an individual basis. Any change to routine is likely to be met with some resistance, so a bit of fuss going out is to be expected. But does your mother calm down when outside and seem to take in her surroundings, or does she remain in an agitated state for the entire time? I think, where possible, it is better to try to keep up a few outings for as long as possible. Because of the various problems I have already outlined, you will find that it will become too difficult to go out (unless you are also what would call a saint in your abilities to look after a sufferer in the more advanced stages).

Of course, if outings cause too much anxiety, it may be best to avoid them.

I suggest talking to the carers, as they will know the “normal” level of fuss and should be able to tell you whether your mother is getting particularly anxious.

Sorry if some of this is making you more upset. It is not my intention. As you may have gathered I am speaking from experience, and I have actually not put down everything I could. My mother died from Alzheimer’s a few years ago, and my father in now in the middle stages.

I hope things are as good (if “good” is the right word) for you as possible.

Skeletal

  Jak_1 23:45 20 Sep 2009

My mother is 94 and has altzeimers, she is at home and I'm the primary carer. We do have age concern attend 3 times a day and when the community nurse gives us the green light we will take her out as that is what she wants. Each case is different and can only be judged on what the sufferer wants and is able to cope with.
It is very difficult and would suggest you get in touch with the Altzeimers society who can give you some expert advice. A lot is trial and error, it is hard work and very tiring looking after someone with altzeimers (dementia) with little or no thanks.

  mole44 05:53 21 Sep 2009

I care for my wife who has Frontotemporal demensia as a carer it`s very hard both physicaly but more so mentally. I used to get £53.10 per week carers allowance, i got to 65 and because state pension more than that they stopped it.I work an 18hour day every day of the year. I love my wife and do all i can for her,sad to say we have no idea how long we have together but every minute will count.we`ve just had our first grandchild,thank the lord she is able to enjoy the little one.Mention Will and show her the pictures her smile beams with pride and melts my troubles away.

  Al94 19:20 21 Sep 2009

Thanks all for the input, it is a dreadful disease not at all generally recognised for what it is. As long as she wants to go out and the anxiety is manageable, we will continue - the time may well come when our judgment says enough is enough. Routine and tranquility do appear to be the key, also agreeing and going along with what they say no matter how wrong it may be helps. I truly admire anyone who is a primary carer, also the care home staff who as skeletal says, get paid usually the minimum wage to do a fantastic job, certainly that has been my experience in the home my mother is in.

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