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Little miracles and unpredictability. - Page 2 - Carers UK Forum

Little miracles and unpredictability.

For issues specific to caring for someone with dementia.
Regarding getting a diagnosis.
A time of anxiety, not least of which might be the carees reaction to hearing it IF it is indeed a dementia type illness.
First, i want to point out that there are many other treatable and reversible conditions which may be causing the symptoms.

In any case, your caree may well surprise you with their reaction. it might not be shock and horror and fear, it might in fact be a kind of relief. Incomprehensible to us? Yes, maybe but we are do not understand the effects of declining cognitive ability do we?
More commonly, depending on the stage diagnosis is received, it will not be understood. plus a sort of self defence mechanism can come into play.. How often do we hear that carees insist nothing is wrong with them, yeah? It is very common for the dog to be palmed for a wet bed for instance, or for the carers memory to be blamed, yeah? Frustrating and common! And ... It has its uses.

I am talking about lack of insight. if you want another word, check out anosognosia.

I copied that word to check it out on Ask Jeeves. My mum definitely has it; it drives me nuts. I understand a bit more now, so many cyber thanks, Dancedintherain (brill sydonom, by the way.)
At first I thought her refusal to use her ace, ergonomically designed walking sticks was stubborn pride... it's not. She REALLY thinks she doesn't need them as she totters, painfully slowly, around. The amount of times I've followed her around, trying to be discrete, and caught her as she's stumbled. Put it this way, if I had a pound for every time I've done this, I wouldn't need to bother doing the Health Lottery!!!
Yet, sure as eggs are eggs, she'll blame her socks (too loose), even the fact that the hallway is too big!!!??? Anything, other than the fact that she needs to use walking sticks.

Sometimes my mum reminds me of those contestants on Britain's Got Talent, or the X Factor. They can't sing to save their lives, but they think they're brilliant, and are so shocked when they're criticized. I think they have 'anosognosia' too.

I don't think I'll ever get her to accept her walking sticks, but she took to her new prescriptions glasses like a duck to water.
She insisted blind she didn't need prescription glasses, despite using crappy 10 year old, shop bought ones, with a magnifying glass, whilst squinting her eyes when reading newspaper... I kid you not!
Dad and me called in a home visit optician anyway. Her glasses turned up, and she loves them.
We bought her a Kindle Fire today. Mum used to be a fanatical reader, but no longer. It may, or may not, work.
I've insisted that my nephew gets it up and running, and teaches me how to use it first. I just know that if mum witnessed me and dad arguing about how to use it, whilst we worked this stuff out, she won't touch it.
But if I can go in there saying, "All you have to do is x, y and z," I think it might work. She loved the Reader's Digest years ago. Hopefully, they're still around, hopefully online; I'll pay to subscribe if they are. That's the first thing I want popping up on her Kindle.
I'm going to check out if Reader's Digest' still exists?
It does; and only £14 something for a year's subscription.
I can't wait to see the look on my mum's face when she realises she's got her Reader's Digest back again.... wish me luck... I'm so excited now I think maybe I need my head seeing to?

I wonder if they still do all that stuff about Jill's, or was it Joan's, overies?
Daffy - just wanted to send (((hugs))). My mum has no appetite either. Will eat a cetain amount but food is a constant battle.

Yes, we are all amateurs. Just as I think I find an answer to something, the goalposts move. One day one thing works, the next day Image . I do find the so-called experts know even less than we do. The only thing that is certain is unpredictability.

Sajehar, if I could only recommend one thing as I suspect your mum is not as far along the dementia path, try to keep her brain as active as possible for as long as possible. Readers Digest is great idea. Sadly my mum is not capable of anything like that ..
yes, seconded!

A couple more suggestions.
Physical activity is good too, for all ages and all levels of mobility and almost all stages of dementias.

Plenty of exercises from a seated position can be of value for keeping circulation and muscles in best order possible. Can also be relaxing and promote better sleep.

It might not be easy to introduce if its a new concept.But you might be able to find ways of introducing it. Music can help and so can being uninhibited yourself, leading by example.In fact, you might be able to make the concept difficult to resist joining in if you can muster enthusiasm(or feigned enthusiasm) yourself. Do you see what I mean?

Play acting cleaning windows to music (circular arm movements) or swimming strokes can be fun. Shoulder shrugs. Shoulder circles? Dance like nobody is watching, yeah?!

BUT NEVER encourage anyone with high blood pressure to raise arms higher than shoulders.
Always start slowly and always calm session down to end.
And five minutes alone is better than no exercise at all.

Now walking sticks. None of my business Sajehar but were they prescribed by an occupational Therapist? In any case, maybe it's time for a review. It's not actually EASY to learn to use walking aids. An OT might have alternative suggestions to help your mother with her current mobility problems.(I know you have told us she is reluctant to have help but you did manage the spectacles ok).

I really don't want to sound like I am nagging. But I have a feeling/hope you trust me enough to know I mean well.
(Ps Sajehar, thanks for emoticons, specially the singing and dancing in the rain lamppost one.And sorry I can't send you my Leccy gadget but I have now read the instructions and pressed some buttons and can see its value)

Erm, brackets cos I have gone off topic.
Now walking sticks. None of my business Sajehar but were they prescribed by an occupational Therapist? In any case, maybe it's time for a review. It's not actually EASY to learn to use walking aids.

Good point. I have been frustrated watching my husband's inept attempts to use a walking stick. He doesn't seem able to use it in a way that actually helps his balance, but waggles it around aimlessly. Then it occurred to me that I had actually been taught how to use, first crutches, then a single crutch, and eventually a stick, when I broke my leg back in 1999 — and of course, the instruction has more force when you have one leg in a cast and are not allowed to put any weight on it, so that the stick/crutch is not an optional extra, but the only alternative to hopping on one leg... Understanding how to use a single walking stick to best effect is not necessarily instinctive.

These days it is at least easy to get walking sticks that can be adjusted to the correct length for the user.

Have just read with interest all your posts since mine. Yours dancedintherain of 31st Oct. made me laugh. Everyone I have come into contact with, doctors, specialists, nurses etc., have the stock answer 'everybody is different' which is probably true to some extent which clears them of finding a definite answer. There is no communication with my husband now. To begin with he used to tell people that the memory was going. Now he accepts everything very well, all the pushing and pulling around the carers have to do and when he is up they try to keep him walking which he seems to appreciate. A year is coming up since we started having carers twice a day before that I was able to manage on my own and because I was able to get him to the car twice a day was enough and we had some sort of life now for the past three to four months we have carers 4 times a day and he needs support with standing & walking.
To get back to the experts, recently occupational therapists have come in and there are so many gadgets available now which they think will help and they are eager to try but for us, they seem to have been suggested too late.
If your Mum Sajhar is still at the reasoning stage and has some concentration still, I think we all try to keep this stage going as long as possible.
Walking: my husband used to blame the new carpet.
Our shelves are loaded with all the books my husband used to read. He could sit and read happily for half a day, mostly sea stories and we used to go round charity shops finding them and our daughters were happy to buy them for birthdays & xmas. Now concentration of TV programmes & books have all gone.
Fortunately I have great support from family, friends & neighbours.
My husband never got the hang of or the idea of how a walking stick could help him either. Music: He has always liked Strauss music and brass band music which are the ones we still put on for him.
Listening to each of you carefully. Aware we go through similar challenges.

I always try very hard not to be alarmist .... But ... Do any of you ever spend time worrying about who else might at some point become 'demented"?

I have. I look around the family and friends and notice certain behaviours which I probably worry about unnecessarily. ANd yes, being at the age of risk myself (not that it is age related in many cases) I do think about my own risks too.

Maybe similar thoughts surround those caring for other illnesses. I suppose it must be so. For a start I don't think I would be brave if confronted with cancer. Not too brave at the dentists actually!

I am wondering how you cope with these feelings or concern.

What I have found helpful is discussing the subject with my children. They understand. they understand I would want them to continue with their own lives and not for one moment would I want them to feel responsible for me.
But what I have made clear to them.... Might not be what I get!

They reassure me. And advise me to concentrate on NOW not on tomorrow. None of us know what is round the next corner. we waste so much energy on worry. And that sadness.

Yet stuff lurks in the back of my mind, if not yours.

Interestingly or conversely perhaps .... I can't say I am a model of virtue rushing around doing all the things I should be doing (or not doing lol) to eliminate supposed risk factors.

So maybe, having blurted this out here, I am in fact not overly obsessed after all.
To be honest, I dunno???? Doubt if this makes much sense. Thanks anyway.