Little miracles and unpredictability.

[Dancedintherain]

Under the broad heading of dementia care I think the most confusing part is the unpredictability as I have mentioned on another thread.

The types of dementias (yes, this IS an umbrella term) which by definition and common knowledge are destined for skill losses , often present with unexpected surprises. Not every sufferer will live to experience the "final" stages, of course.

But for those who have or are nursing in the final stage, you will know what I mean.
A non mobile patient at ANY stage might unexpectedly regain mobility. For a few minutes a few days or weeks or more.
A non verbal sufferer might suddenly join in conversation in a quite lucid manner.

Moments to treasure. Moments worth sharing. Moments worth living for.

The diagnosis. Forget it! In the later stages the original diagnosis will often be outdated. In the later stages it becomes irrelevant. By now, other parts of the brain will probably be affected in different ways.

I often wonder now why I used to want to identify which stage my caree was in. Futile! All that matters now and all that ever mattered in the past was his needs. And how I can best fulfil them.

The professionals have made amazing progress with understanding the functions of the brain. Yet they are the first to admit it is still in its infancy.

Meanwhile, we just kinda gotta do the best we can. No guidelines.
Keep them safe as best you can.

[charles47]

Well said!

Information is vital but sometimes it doesn't actually tell you anything you need to know. The hard part is knowing which is which.

[Bluebird]

My little miracle each day is seeing my Mum smile x

[rosemary]

I often wonder now why I used to want to identify which stage my caree was in. Futile! .

I was at this stage a few months ago but gave it up as was too confusing. It is now over 2 yrs since hubby was diagnosed, we reckon symptoms there a year before that too, but we never picked up on them.

If I go through the descriptions for each stage, for some issues he is already at stage 6, others between 2/3. No 2 days the same but for me the changes are pretty fast. I am reducing hours at work after xmas.

I had printed off the different stages but now ripped it up. It did inform me to a degree but now we deal with one day at a time and each change at a time.

Most of my dementia awareness has been via those of you on this forum, Talking Point on Alz forum and various blogs I follow via twitter. Real experiences help prepare me, even when reading about this illness in latter stages.

It is almost 7 years since I joined this forum. At the time had mam and brother to care for. Never ever crossed my mind I would still be here, albeit different circs. Now it is hubby and dad, with frequent visits to bro who is in residential, a place he loves.

My circs may have changed but the friendship and support on this forum hasn't. It has gone from strength to strength and from bottom of my heart I would like to thank each one of you, past and present members, that have touched our lives.

x x x

[Dancedintherain]

Rosemary, you are doing ok, trust yourself.

[Dancedintherain]

Random comment in general.

In my childhood, it was to be expected that there would be at least one "batty old soul"living up the road. They either sank or they swum. I don't even know if anyone noticed. have times changed?

[pamr1]

what a lovely lady you are rosemary, you have supported all of us here on this forum, one way or another. and for that i thank you. pam x

[Brindleboy123]

Interesting post and although I have been fortunate not to have had a member of my family suffer this awful disease, I heard yesterday from my daughter that my ex sister in law has been diagnosed. M is in her late 60's and has Downs Syndeome. for the past 30 years plus she has struggled with Anorexia and bullimia too. M leaves in residential care now following the death of my father in law. The "little miracle" if there is such a thing with this horrible disease is that since the dementia has taken hold, M has "forgotten" about her eating issues and now for the first time in so many, many years sits down and enjoys good meals every day without a second thought. There was certainly a time when no one could eat around her but I'm told those days are long gone.

I am not for one minute belittling the effects of dementia but as the title of the original post states, this was a little miracle.

Bell x

[daffy1]

Oh how I identify with all the posts on this matter.
My husband has dementia which is what came first and parkinsons disease. I am sitting here the carers having brought him down as usual for breakfast and this is the first time he has not responded to breakfast. He has dropped off to sleep and I have tried a spoonful but he doesn't seem to be swallowing. For a long while now there has been no communication as to whether he is hungry or thirsty and never shows any signs of being hungry My grandsons wife suggested last night that maybe his stomach has ceased to send the message of hunger. He is waking up for a few minutes and then falling asleep again. I think no matter how long we have been dealing with this & whatever experience we think we have gained, we are amateurs to the end.

[Dancedintherain]

Yes, I agree, we are amateurs despite our experience.

You know Murphy's law? "the expert is someone who knows more and more and more about less and less and less until finally nothing is known at all about anything".

Wry grin. But taking it on one step, at least the experts (neurologists, psychiatrists etc) admit they know very little of value. try asking them specific questions ( I have!) and they admit they don't know the answers.

So perhaps we should be more lenient on ourselves, as carers?

After initial diagnosis, we don't seem to see much of the specialists do we? Simply because they have little to offer.

we might see them concerning meds, (sometimes antipsychotics etc)but they cannot give us definitive answers on how as to how the meds work, whether they will be effective or
not or definitive advice on the risks involved. Mostly a bit of educated guesswork and a fingers crossed scenario.

I think my heart goes out most of all to those in the prediagnosis or recently diagnosed stage. The stage when we rage the most perhaps?? Debatable of course.

Wishing you and your carees whatever you wish for yourselves. Xxx