Darker side of dementia

For issues specific to caring for someone with dementia.
Forgive me, but I was under the impression that Henrietta had originally asked for tips on how to deal with this lady with challenging behaviour.
Should she decide that she doesnt wish to continue with her then that is, of course, entirely up to her and no-one will think any of the worst.
Henrietta, you are perfectly within your rights to tell this lady firmly that you are not there to be her whipping boy but whatever you say, she will not remember. Dementia presents many challenging behaviours and the sufferer cannot amend their behaviour in most cases. All you can do, as Crocus has suggested, is amend your reaction to it and indeed the way you respond. If you google "compassionate communication"' you will find other tips. I am sure that caring is a very difficult profession but the problem is if your clients were that grateful and cooperative, they would not need help in the first place. Be warned that many dementia sufferers can become violent as well, my own mum included, especially when feeling stressed.
Henrietta - Do you have information regarding this lady's earlier life, eg what interests she had, hobbies, did she play tennis, what TV programmes does/did she like - things she might remember from long ago which would provide you with ideas for conversation. You might find something she enjoys talking about and, because of dementia, you could cover the same ground again any time there's a lull in conversation.

In the meantime, enjoy your break Henrietta
Crocus, one effective tip on how to handle this client is to walk away from her.

I do agree that it takes a special level of care to deal with so challenging a client, but when one has 'challenging behaviour' in one's own private life, that 'special level of (professional) care' may just be too much.

Whether or not a patient with dementia is or is not capable of modifying their behaviour (and remember, Henrietta said that her client's behaviour did change somewhat when it was pointed out to her!) is one thing, but whether or not a care-worker can modify their own response so that they are not stressed and upset themselves by the challenging behaviour, is another!
My elderly mother has vascular dementia and is currently in hospital (due to treating liquid in lungs brought on by poor heart function). We have been briefed by a doctor there re. what her condition of dementia affects physically AND that these affects are, inevitably, terminal! We have been told that the brain is "shutting down!" This is the first time I had heard that dementia could shorten life and it does seem to be a relatively new development/acknowledgement in medical circles.

She has swallowing problems - related to dementia (confirmed by a speech therapist). Sometimes the food just goes round and round in her mouth and she can forget (temporarily) how to swallow! Her food and liquid intake is gradually diminishing; she has to be coaxed now to eat and drink. She is due to return back to the care home within the next day or two and the doctor suggested palliative care. The implications of this being that, should she again get liquid on her lungs, she will not be returned to hospital for treatment since all interventions will be cancelled. Although we have power of attorney re. her health, we are told that the doctor can override this in terms of what treatment is right for her. We feel it makes a nonsense of our powers.
Amy, it was on this forum that I, too, first learnt that dementia is regarded as a terminal illness, because, as you yourself say you were told, it shuts down the brain. At first it shuts down the 'higher brain', the seat of our consciousness and personality and 'mind', but eventually it reaches the 'lower brain' that is responsible for all the automatic 'life-support' systems, keeping the heart beating, the lungs working, etc. And of course, when those life-support systems shut down, then death follows.....

End-stage of any terminal disease is hard to witness. I had to watch my husband die of cancer, and yes, he too was declared DNR (Do Not Resussitate), without my 'consent' (though in the end there wasn't a question of resuscitation anyway), and yes, he lost his swallowing reflex as well, and after that food and drink had to be withdrawn, as it was too dangerous, in case the food or liquid went on the lungs and he choked to death.

When you witness these dreadful things happening in someone you love, the instinct is to try and preserve their life by any and all means, for however long you can. BUT, and this is the hardest thing of all, there will come a point when we just have to stand back and 'let them go' - when the body/brain has become so frail, living so difficult, that the kindest, most loving deed is to stop trying to keep them with us. Knowing when that time comes is hard, and yes, doctors who obviously do not love the patient, but have to act in their best interests, may say that that point has been reached before those who love them - us - can either believe it, or let alone want it.

I hope that if that time has come for your mother, that you will be able to allow yourself to let her pass from this increasingly difficult life, and grant her as peaceful a passing as can be. It will not be easy, it will tear you in pieces, but it is, I truly believe, our final act of love for those we are losing from this life.

Kindest wishes to you, at this most painful time - Jenny
((((hugs)))) amy - it is hard when you reach this stage. Your mum may go on for some time like this and may even rally a bit though. My MIL went up and down at the end and 3 times we were told to expect the worse only for her to perk up. I assume that the speech therapist has recommended that her food and drink should be thickened to make it easier to swallow.

Ive just had end of life conversations with mums GP and her care home. They have sent me a Preferred Priorities for Care (PPC) form to fill in on her behalf. As you have PoA have you done this for your mum? If you havent, its probably best to get this organised now, before it becomes urgent. I have opted for mum to be treated at her care home and not to be taken to hospital for investigations or invasive treatment (ie no scans, drips or tube feeding) and when the end comes to be left in comfort and pain-free for nature to take its course. What sort of treatment do you want for your mum?
Amy Green

Hearing those words ‘Palliative care’ is such a shock to the system – mine went into overdrive - even though I knew it deep down. There’s a world of difference between ‘knowing’ something intellectually in our minds, and ‘knowing’ it in our hearts.

Like your mum, mine too has been diagnosed with vascular dementia (initially Alzheimer’s) plus heart failure (she’s had at least 3 heart attacks since April last year) and very poor mobility (and getting worse) due to bad arthritis.

After mum’s last visit to the hospital (for liquid on the lungs due to poor heart function), mum’s home visiting heart nurse was brilliant. Seeing how upset I was becoming on hearing those dread words ‘palliative care’, she dragged me from the room to the kitchen on the excuse she wanted a cup of tea… I kid you not.

She explained to me that palliative care meant making a patient as comfortable as possible, pain free, etc, as nothing else could be done for them. Mum was way too frail for even exploratory surgery; each condition fed into the other one making a perfect storm.

I know for a fact that my mum hates, ABSOLUTLY HATES, being in hospital, and wants to die in her own home.

I insisted we explained this to my mum. Perhaps that was wrong of me, but her replies shocked us all.

“Does this mean I’ll never have to go into hospital again?”

“Yes mum.”

“Thank God for that! I want the little kiddies to get treated and not me. I’ve had my life…. Can I have a cup of tea?”

“Of course you can mum.”

That really moved me. Still trying to get her to drink water – a near impossible task – but mum is comfortable.

Perhaps this is horrible of me, but I hope the heart attacks get her before the dementia does.
Sajehar wrote:Perhaps this is horrible of me, but I hope the heart attacks get her before the dementia does.
No, thats not horrible at all. I feel in a similar position as mum got taken recently into hospital with a mini-stroke. That is what prompted all the end of life discussions, although nobody has uttered the word "palliative". I too would prefer her to go quickly from a stroke rather than from the dementia.
Thank you all so much for your detailed and helpful replies.

Jenny Lucas - I realised that drinking could be problematic i.e. if it went into her lungs but not eating too! She does have a gross thickener (which she hates) for the water and eats pureed food....well, we mostly feed it to her.

I am not sure she is ready to go...even though her quality of life is poor. The only time I have heard her say "I don't want to be here anymore" is when she has been in pain. Her days fluctuate i.e. some days she doesn't want to communicate much, other days she can smile and interact a bit more.

Crocus- thanks for the PPC info. Not heard about it. I will ask at her care home tomorrow about this. My sister and I have POA (re. her health) and we have a brother....so would this form still apply?

Sajehar - yes my mum has had 2 strokes and 2 heart attacks. Unlike your mother though, she is not able to recognise where she is and has to be told.

Do you know what the awful thing about all this is? My mother was a strong workaholic. She only contracted her first stroke because she was taken off of viox too late! That damn drug had to be taken off the US market due to its link with strokes! (Don't get me started...)