Purposely not telling someone with dementia news or events

[Linbrusco]

Mum 74 with moderate AD.
Have already learnt not to tell Mum when any doctors or hospital appt is due until the day, to save a lot of anxiety and questioning.
When Mums two sisters went back to Scotland for a months holiday I told them not to tell Mum. She simply would not understand why she wasn't invited. Least of all her dementia and mobility issues sitting on a plane for 20+ hrs.
In the end another sister let it slip. For 3 whole weeks we never heard the end of it.

Now as Mums dementia advances, she can usually remember important facts, just not the finer details.
So, Dad and I will face questions repeatedley for days on end. Mums anxiety worsens as a result.

Now, Mums brother is organising a reunion for all the family this coming April as it is 50 yrs since they emigrated to NZ from Scotland. They came by boat which took 6 weeks.
She has heard it mentioned before by one of her sisters but didn't take much notice and yesterday her brother phoned her. It's lucky if he phones her twice a year!

Now she is all in a panic. How is she going to save money to go on the boat. How will people get time off their work. Would she be able to go. How long will it take. Are they going on the same boat. Who is going?.... Her parents came with them on the boat, but now they are dead... Will that matter....
and on it goes.

I wish I had the forethought to tell her siblings not to tell Mum anything. Same goes for any event at all really... Until the actual day of it happening.
Is this fair?

 

[nae sporran]

Mum 74 with moderate AD.
Have already learnt not to tell Mum when any doctors or hospital appt is due until the day, to save a lot of anxiety and questioning.
When Mums two sisters went back to Scotland for a months holiday I told them not to tell Mum. She simply would not understand why she wasn't invited. Least of all her dementia and mobility issues sitting on a plane for 20+ hrs.
In the end another sister let it slip. For 3 whole weeks we never heard the end of it.

Now as Mums dementia advances, she can usually remember important facts, just not the finer details.
So, Dad and I will face questions repeatedley for days on end. Mums anxiety worsens as a result.

Now, Mums brother is organising a reunion for all the family this coming April as it is 50 yrs since they emigrated to NZ from Scotland. They came by boat which took 6 weeks.
She has heard it mentioned before by one of her sisters but didn't take much notice and yesterday her brother phoned her. It's lucky if he phones her twice a year!

Now she is all in a panic. How is she going to save money to go on the boat. How will people get time off their work. Would she be able to go. How long will it take. Are they going on the same boat. Who is going?.... Her parents came with them on the boat, but now they are dead... Will that matter....
and on it goes.

I wish I had the forethought to tell her siblings not to tell Mum anything. Same goes for any event at all really... Until the actual day of it happening.
Is this fair?

OH has Vascular Dementia an hates blood tests, especially the bit just before the needle goes in. As she will only fuss and fret all morning I usually tell her at the last minute she has a routine appointment to see the nurse about her diabetes or something. She usually realises what is happening when we get to the waiting room, but that means only 5 minutes of worrying and the phlebotomist is so nice about it she goes away feeling happy anyway.

On the balance it does seem to be the lesser of two evils, so I would not feel too guilty about it Lin.

 

[Beate]

In my opinion there is no point in telling a person with dementia things like this. Either they won't remember so telling them was a waste of time, or they will remember, home in on it and start fretting. I really don't get why this is so difficult for some relatives to understand.

 

[Onlyme]

We learnt never to tell MIL or we would have solid phone calls for the next few days. Mil had a cousin who didn't agree with this and thought MIL wou,d remember if told enough times as it wasn't nice not to tell her. 24 hours later cousin rang us almost on her knees with tiredness as MIL hadn't let up ringing her up to 10 times an hour, all through the night etc. After that she decided not to tell MIL until the event.

Mil used to play Chinese whispers with what was going to happen.

Hospital appointment.
hospital = operation
Operation = death
Death = who had died
Died? No one told her about he body
Body? Where was the body?
Body? Funeral? No one had taken her to the funeral


And so it went on.

 

[marionq]

Reading these posts I am kind of glad that John remembers nothing that I tell him. He makes up his own scenarios every day based on nothing at all as far as I can see so to add to these would be superfluous. Of course pearls of wisdom pop out now and again along with jokes or foreign languages - usually schnellmachen! - it is a very inventive world this dementia.

 

[Marcelle123]

My mother's dementia is relatively mild, but I only tell her the day before my brother or sister is coming to visit her, because otherwise, with two weeks to go or whatever, she'll keep ringing up every afternoon wondering why they haven't arrived. If I only tell her what she needs to know, it cuts down on worry, disappointment and so on. If I only tell her about a (routine) visit to the doctor on the actual morning (I make later appointments) it prevents my mother having a sleepless night beforehand.

I think rationing the information is the kind thing to do.

 

[tatty]

We have had problems with well intentioned 'old dears' at MIL church suggesting CH opposite the church where she has worshipped for 42 years, which MIl is no obssesed SS are going to fund , they are NOT as they believe extra care is suitable 3 miles from church , MIL is with us at mo half an hours drive away but MIL will still see extra care place as too far away from church (her only concern) , it's not, _because she has always wanted to live by her church the posh part of town so once mentioned she will not let it go even though she agreed with SS that CH was not suitable......

So when she is back form xmas break on Tues at SIL , OH is going to have a quite word with her church friends about making suggestions to US outside of MILs hearing in future as though at times she told us she didn't want CH, at others she does, she had packed her bags to leave for the one mentioned by her friends with in 24 hours of it first being suggested and refused to ' unpack' for 3 weeks!

We have decided not to show her around extra care place until a place is offered as we know she will think it is a done deal and will expect to leave immediately and/or will fret about what that entails.

Its difficult to stop others from putting their foot in it as they are often well intentioned and don't realise or are in denial as to the irrational response it invokes in the pwd.

 

[fizzie]

We also didn't always tell mum if things were happening that it wouldn't be possible for her to go to for any reason. I didn't think it wass fair to tell her and then say but she had to stay home -seemed cruel. i also didn't tell her anything that would increase her anxiety - she already had enough to cope with, why would I want to upset her. So i'm afraid in the interest of her general well being I am guilty of lies

 

[MrsTerryN]

Never told mum about appts or such. If she remembered then she constantly was talking about going

 

[Suzanna1969]

I've advised Dad not to tell Mum about ANYTHING, appointments, friends visiting etc. If it's a hospital appointment or similar she thinks she will be taken straight from there into a home and it's a trick to get her out of the house. If it's friends or relatives she gets in a terrible state, usually because she can't remember who they are. She spends the morning of the event crying and saying 'But I don't know them', even her friends she has known for 70 years. On the occasions I am able to get them out of the house (Dad has Vascular Parkinsonism so can't walk without his stick on one side and me on the other) she gets herself even more worked up and almost always tells us through her tears she will stay at home, which is obviously out of the question.

She is almost always perfectly ok during the actual appointment or visit.

Finally Dad has taken my advice on board and it works so much better if she doesn't know up until the last minute. He is still struggling to cope with how her dementia affects her though. He is a very logical man and, as we know, logic has no place in the world of dementia. Of course he is struggling to come to terms with his own condition too.