to tell or not to tell

[Áine]

Seem to be going through mega-angst at the moment. This is linked to other thread that I started this evening. I was supposed to be taking my dad to see his brother tomorrow ....... but my uncle is too ill to have visitors and I'm afraid he's going to die soon. I've sort of diverted it in the short term by planning to take dad to see his sister instead. But what should I do about his brother? Dad asks every time I see him about his little brother ......... and asks my cousin ( who is my dad's other main visitor ..... and daughter of said brother) how he is. Will I lie to dad? Will I tell the truth and risk him being devastated? If I tell him his brother is dying/ has died, will he remember? I don't like to be dishonest ..... but I don't want to put dad through more pain than he needs to have

 

[connie]

Haven't even thought about this, just gut reaction.

In my opinion you have to tell dad the truth. You cannot shield him forever.
Your uncle may not die (god willing) but dad should have the chance to be prepared. How long will you go on fabricating stories if you do not start with the truth.

Sorry, I do not mean to sound hard, and it is only my own opinion. As dad already asks your cousin I feel just tell him. If it registers he will be upset (as any normal person would), and if it doesn't.........you play it by ear.

I agree that our instinct is to shield them, but when they ask a direct question.

Ah well, you invited comments, please do not take offense at mine.
Regards, Connie

 

[Amy]

Hiya Aine,
Have you told your dad that his brother is not well? How did he take that news? If not, it might be worth telling him he is not well (understate the situation), then you will be able to gauge his reaction. You will also be able to see if he remembers the conversation. I know when my mum's beloved elder brother died we told her, and she was completely unphased, how grateful I was for the dementia - it did not have the emotional impact that we anticipated. So what am I saying? Dip your toe in the water, see what happens. It's difficult, cos I think if your dad is well enough to understand his brother's dying (I am looking ahead), then maybe it is right to allow him that grief, and if he isn't well enough then even if you do tell him, he is unlikely to remember.
But one thing at a time Aine, worry about tomorrows excursion, get that out of the way, before you start worrying about the next thing!
Best wishes
Amy

 

[dmc]

hello again Aine

my mums forgotten her mum has died and asked tonight how she was! we just told her she's fine and she seemed happy with that, in fact she talks about all our deceased relatives as if they're still around so weve just decided to go along with her and not cause her anymore upset, we dont like doing it but we dont see the point in distressing her by saying they're not with us anymore.

I dont think telling a few untruths to save a person distress is a bad thing, but thats only my point of view

just do what your heart tells you is the right thing
best wishes

 

[Norman]

Hi Aine
my wife often talks about dead relatives.
"Shall we go and see Aunty Dolly"?
"When I Mom coming in"?.
There again she asks "When is Norman coming in "?
I aint dead.
Norman

 

[Áine]

Connie, Amy, Donna, between you you express exactly the dilemma I've been going through. I'm torn between telling him the truth (connie) and saving him the distress (donna). Yes, Amy, I've told him Uncle P isn't well ....... that's I think why dad is asking +++ how he is. He was devastated when his other 2 brothers died. He was devastated when my mother died ...... 8 years ago ........ but now asks me how she is. Maybe there's no right answer. And maybe you're right Amy .... get one thing over at a time

 

[Áine]

glad you aint dead Norman I'm sort of on the edge of family relationships (lots of reasons) and it's a bit freaky cos I don't always know who's dead and who isn't. Sending Xmas cards last year was a dodgy business

 

[rummy]

Hi AIne,
Faced a similar dilema yesterday. My brother had major neck surgery which was very serious. He is 8 hours from us. My Mom was distressed about it and wanted so badly to see him but it just isn't possible for them to make such a long trip. My brother didn't need the added stress right now anyway.
The day of his surgery Mom forgot about him. When I found out he had a successful surgery I almost didn't bring it up so that she wouldn't start to worry again and fret to go see him. But, he is her son and she has a right to know. So I told her, it kinda upset her but I managed to make her understand we didn't need to go because he is being taken care of.
Today, it was hardly mentioned again. What she wouldn't have understood is why he wasn't calling her so I'm glad I told her. She might not really understand and might forget but it is ok.
Good luck, these are hard calls to make. Just do what you think is best.
Debbie

 

[Sandy]

Hi Áine,

This is a tricky one.

Personally, I would make a distinction between deaths that have occurred in the past and a possible death in the present.

That is, when someone asks after their mother that has been dead for 25 years, there is no point in telling them that she is dead. That person is clearly living in a different time and passing on this information about their mother will just be upsetting. It will not shift them forward in time to the present moment.

I think you need to give your father the opportunity to experience and share his feelings with you and your cousin and other members of your family. That genuine connection with others, even if it is during a period of grief or uncertainty, is such an important part of what it is to be human.

In some ways, his AD may act as a filter. If he is able to understand what is happening, it could have a variety of consequences - not all of them negative. He might be able to reflect and talk about his experiences with his brother. He might feel how bittersweet it is to be part of a family. Then again, the AD might filter some of this out over time and he might not feel so deeply in a few weeks.

Take care,

Sandy

 

[Áine]

Personally, I would make a distinction between deaths that have occurred in the past and a possible death in the present.

Thanks Sandy. I think that comment puts your finger on exactly what I was getting muddled about. I feel that I should be honest with dad and not lie to him about my Uncle, but I'd also taken on board comments from various carers about not re-traumatising people about deaths that had happened years ago and been forgotten, and was thinking therefore that I have to shield him from this. The distinction you make just makes so much sense. I guess maybe it's obvious in a way, but I get so I can't see the wood for the trees sometimes.

Like i mentioned on another thread, I've taken dad to see his sister today, and his brothers serious ill health has been talked about and dad has taken that on board. It seems right that I should tell him when his brother dies ..... and hope that it doens't cause him too much pain ..... and / or that the pain doesn't cause too much decline in dad's condition.

 

[Sandy]

Hi Áine,

Glad to be of help. I understand completely about the "not seeing the wood for the trees" - happens to me all the time.

I'm glad the visit to your aunt went well. Even if the news about your uncle was difficult, at least your dad felt like he was still involved in the life of his family.

Well done

Take care,

Sandy

 

[Áine]

It's been time to put the theory into practice I'm afraid. Sadly (though also a relief in some ways) my uncle died last night.

I was dreading telling dad. I'd made my mind up to tell him based on what we'd talked about here. But the nh were a bit uncertain about it, and a bit surprised that I was going to tell him. And a bit wary "he's been a bit unsettled today etc" But when they saw I'd made my mind up they were supportive and told the night staff as they were coming on shift so they could be supportive if dad upset or more unsettled after I'd left.

Dad, as ever, surprised me. Because he's deaf and a bit confused, I was really making sure I had his attention: "dad, there's something I;ve got to tell you .." He looked at me, as though I was making a major fuss about nothing and said "well, I think you better just get on and say it". It's always a bit of a lottery talking to dad ... he could just have easily have said "parachuting" or "january" or something that seemed utterly off at a tangent. I reminded him that my uncle had been ill, and then said that he'd died. Dad just said "Oh, well, we were expecting that weren't we?" Talked about death being part of life. He was sad that we'd not been able to visit his brother last week as we'd planned. When I reminded him, he remembered us having send him a card and taking a photo of dad in his new room to show to his brother. He got him a little mixed up with another brother and thought we woudln't be able to go to the funeral because it was too far away, but was keen to go when he realised its only about 70 miles, and started looking forward to an opportunity to see all the family there.

He's amazing sometimes, I didn't think he'd really taken on board that my uncle was so ill, and to honest I've shielded him from it quite a bit. He seemed so lucid for a while talking about that. Then went back to his previous repeated questioning about what time lunch would be (bearing in mind it was 8pm).

It's going to be interesting taking him to the funeral, cos he doesn't realise when he needs to be quiet, or how loud he talks. But he's part of our family, and I guess we'll cope with it

 

[dmc]

Hello Aine

just to pass on my sympathy for your uncle, im so pleased you were able to tell your dad and he understood, in his own way.

im so glad it worked out ok for you and your dad
best wishes

 

[Tender Face]

It's going to be interesting taking him to the funeral, cos he doesn't realise when he needs to be quiet, or how loud he talks. But he's part of our family, and I guess we'll cope with it

Aine, I only just saw this post. I am sorry about your news but have every confidence in you that you (all or individually) will 'cope'.

My sincerest best wishes to you, TF, x

 

[Áine]

Thanks TF. It's going less well today. Arrived at the nh nearly 8pm after long day at work, to find dad in very distressed state. He's aggressive and stripping his clothes off and quite confused. Not seen him like this since weeks ago when he was moved to nh from hell, before he got to this one. He calmed down ........ eventually, with lots of cuddles, and tea and biscuits from lovely night staff. But talking very anxiously about funerals and flowers etc. Trying to hang on to confidence that it was 'right' to tell him and include him in this. We're all distress about Uncle Peter ....... we might not all be expressing it by stripping off in the corridor and attacking care staff ..... but none the less, it is upsetting and has to be expressed in some way or other.

 

[noelphobic]

Sorry to hear how your dad was tonight. I wouldn't have gone on quite as much in my pm if I'd known

As you say, you are all distressed. Your dad's distress is manifesting itself in a different way because of his condition. I am sure it was awful for you to witness but maybe it did him good to get things off his chest in his own way. I think you said he reacted better than you expected when you gave him the news. Maybe he was slightly in shock and this is a delayed reaction.

I thnk you were right to tell him about his brother's death, although it might not feel like it right now.

Take care of yourself and I hope things will be better soon.

 

[connie]

Aine, I think you have hit the nail on the head.........you are all going through the grieving process in your own way.

Dad is just doing it "his way". It must be so, so hard for him, to try and understand exactly what is going on. Of course, he had to be informed, but I hope things settle down for you all very soon. Be strong, Connie

 

[Amy]

Hiya Aine,
Sorry that dad was not so good tonight, and sorry to hear of your uncles death.
For what it is worth I think that you did the right thing telling your dad;part of his life journey, and he too must be allowed to express his pain and hurt. In some cultures people do wail and tear at their clothes (I think); we are so all used to the "stiff upper lip" reaction, but maybe the dementia removes those inhibitions.
My thoughts and prayers are with you.
Love Amy

 

[Áine]

thanks for your reassurance, all of you.

noel .... it was lovely to get your PM .... don't think you were "going on" at all

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rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr gfvctdvn] sorry ..... this is the cat's contribution ..... she has to make her voice heard

connie and Amy ... thanks for your reassurance....... It's not easy to hang on to when he's so confused and distressed, and the nh are obviously concerned ..... but I think it's the right thing.

 

[DickG]

Aine

I am apalled at the cat's views of the human race - when out on the tiles I always take my boots off first, after all a lady is entitled to respect.

Hugs

Dick