Reorientation of people for death.

Grannyknot My mum was decidedly the anxious sort and not "away with the fairies."

The rather dreadful term "pleasantly confused" was once used.
This should have been better put as "confused but pleasant and happy," as opposed to confused and oppositional which was my mother.

My husbands Gran was "away with the fairies" but happy and gentle. The family had given her a soft toy dog she could hold and stroke which really helped her.

Indeed kitty- your mum is very lucky you never gave up on her despite all the difficulties of the past and now. Well done you- when the time comes, rest assured you will find it so much 'easier' to go forth- knowing you did your best- despite circumstances.

And thanks Brenda- very interesting. I used to get quite cross when people, family or staff, corrected my mil. At the beginning, it was fair enough, but later I found it cruel. And sister in law accepted that she had become the 'mother' and stopped correcting her.

It sounds to me as if you and your family know what your mum's needs are kitty which at this time is all that she needs.

Take care of yourself too.

Mum would be horrified if a priest of any sort went to see her!

Had to make a comment here cos my mum was a Roman Catholic. I searched the hospital for a priest because my mum had made me promise to make sure she had the Last Rites. I found one after a long search - her parish priest was unavailable.

Mum became extremely agitated and I had to say that the priest was going around giving healing oils. She calmed down then.

Not sure if RC priests are fire and brimstone these days because the old guard have passed on. Just the sight of the priest did make my mum much calmer once I had explained that it was only a routine visit.

Difficult times indeed - my thoughts are with you.

The consultant who diagnosed my MIL told our family "You end up with two states (eventually) - anxious, or 'off with the fairies'. Pray for the latter".

Thankfully that is what we had.

kitty

Kitty Is it worth trying to see if she would consider talking to a Catholic priest to give her absolution or such, if you can find one who is not a fire and brimstone type. It might help undo her terror at the earlier stuff with whuch she has been indoctrinated.

I agree that, for want of a better word, someone with dementia who is getting very anxious, as FlicketyB has described a little white lie is kinder if it stops someone being very distressed.

BrendaWymms point is also helpful.

My heart goes out to you. My mother had a really bad dementia and I quickly learned just to nod and smile. At one point she thought I was my dad and at another point she didn't know me at all and told me to clear off but using stronger language than that.

My DH had two strokes before he passed away with cancer and he was very confused. Again I kept things calm and agreed with things he said. He thought at one point that we were part of a documentary and was I being paid. I just smiled and said "I guess so."

Well put Flickety B. You have to live in their reality.

When mum was first diagnosed we were advised by the psychiatrist to 'never argue and never lie'.

In the early stages of her illness that was very difficult as mum, being mum, would catch people out. It is much easier now, although she appears to know that her parents and Dad are dead! Although, my younger brother looks like Dad which can add a bit more confusion!

You are right Grannyknot it is an awful illness and I am pleased that it seems unlikely that mum will live long enough to get much worse IYSWIM. In her terms she has quite a good quality of life at the moment.

At my FIL' s funeral, my MIL being in an already advanced state of Alzheimer's, thought she was at a party. She did keep asking for ... and was told "He's here somewhere". We kept that up for a while afterwards too "He's moving the car" always seemed to satisfy her. Then she stopped asking for him.

For years, before she stopped talking coherently, she thought her son (my husband) was her brother, and I would find it so touching the way he would sit with her and "reminisce" about their school days, or their childhood. He basically went wherever she was in terms of conversation. It would make her so happy.

Sadly she can no longer communicate at all.

It is the saddest illness.

Well put FlicketyB that's exactly what I meant; it's all about balance (and getting to know the person) not tick boxes to say they have been told - or not as the case may be.

I always think it is very arrogant of people, particularly medical and social carers to think that their 'reality' is superior to those of other people, particularly those with dementia.

When my uncle first went into care he was in constant distress because he was convinced (wrongly) that he had a meeting with his bank manager booked that he was going to miss. After several visits and this worry I just said to him firmly. 'There is no need to worry. I have seen the bank manager and told him you cannot manage the appointment and he is quite happy with that'. My uncle's face cleared and we heard no more of the meeting with the bank manager.

I was not lying to my uncle but I was living in his reality when I gave that reply.

I would really have something to say if anyone tried to discuss dying in this way with my mother. So far she has not lost the memory of my father's death but what on earth point would it be to remind her if she had? Alzheimer's patients do not forget, they lose memories so if you tell them that someone has died again and again they have to live that moment again and again. That is terrible.

It is a very difficult balance and each day you have to decide whether you have got past the point where explaining something helps or confuses; you cannot systematise such an illness.

Well done your brother Kitty and let's hope all such patients have someone like him in their corner.

That's very helpful Brenda, thank you. I imagine that's what it was about!

I don't see why anyone should be told they're dying unless they specifically ask. And in the case of dementia/Altzheimers patients I agree with you, Grannyknot. Downright cruel, and unnecessary.

If it is about informing someone with dementia that they are dying, I think that is unnecessary. Appalling in fact.

Good for your brother kitty

Within dementia care there is discussion about reorientation to get people to the here and now and if that is a good idea or not.
Such as someone asking to see their husband/ mother etc and told that they had died. That is reorientation them as is reminding them of the date and time or that they are dying.
Personally I always thought it cruel, whilst not a great idea to go along with disorientated thought it can be talked around. Such as a dementing person asking for their mum. It's no good saying mum is coming, when been dead many years, but better to get the person about their mum and what she liked to wear, cook etc.
To keep telling a person with dementia that they are dying is very distressing over and over. Better to talk about more happy things.

Don't know if that is what the query is but if it is hopes its useful.

We know kitty that you have done all you can.

Kindly spoken, agus, and so right.

As your younger brother doesn't spend as much time with your mum, he will have a lot more to talk to your mum about whereas you seeing your mum much more often, it's very difficult to come up with lots of interesting chat.

I don't know if your brother and mum had a tactile relationship before her illness, either way, I would think he feels a need to have that with her.

We are all,different kitty, there is no right or wrong way for any of us to deal with whatever we have to face.

Sometimes it is easier for sons than daughters when it comes to mothers.

My brother spent quite a time with her this afternoon,.telling her that we are all going to die but it's not her time yet and she should keep taking her medication.

While she was in hospital over Christmas she kept getting hysterical about not being able to breath and that she didn't want to die. Her father was a Catholic and she went to a really strict convent school where there was a lot of talk if fires of hell etc!

She has an end of life plan which everyone , including GPS, home staff etc are comfortable with.

You could be right Agus and they have been told to stick to the party line!

I'm so impressed by my youngest brother as he is as cross with mum as I am yet spent ages talking to her today. I'm not sure I could have done! . He doesn't go that often but he kisses her hello and goodbye. I go much more often but can't touch mum

I wonder who used this phrase - perhaps your brother could ask that person exactly what they mean?

I must admit that it does sound as though it might mean the difference between "striving to keep alive" and deciding for palliative care.

I know that your mum is very ill kitty and I hope that between you you are able to make the right decisions on her behalf.

No, not from my understanding and limited experience of sitting on the EoL strategy group locally. It is more about ensuring everyone can, if they wish, be involved in their treatment and care at all stages of their lives including when their life is coming to its end, and have the opportunity to say what they want to happen (and can change it at any time) eg. Living wills, staying at home, no life-prolonging procedures if appropriate and so on.
It is intended to help not distress and entirely optional for the person and the family to contribute.

Another thought kitty. As your mum has Alzheimers which entails disorientation, does she have lucid times when she may ask the staff what is happening to her? The choice would then be made to tell her the truth or not.