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Do i tell him he has dementia?

Hi everyone, 

a topic that seems to consistently be brought up in my house is dementia by granddad. if he forgets or if i get abit frustrated that hes repeated himself for the 10th time in the day or he starts to take things out on me and i point it out he will say things like well 'its my dementia playing up' 'everyone thinks i have dementia so i may as well act like it' 'oh well i have dementia so im allowed to' 

most of these things are said in a tone thats serious and angry not in a joking way either. no one else can mention that word in this house otherwise the world ends so im torn at what im suppose to do. 

 

When he starts saying things like this is it worth sitting down and saying nicely that the drs do think he has dementia but thats why weve been eating more healthy (and other things) to help him start to process it or am i suppose to just let him have his moments knowing that at some point it will worsen and wont remember or even know his behaviour is part of his dementia. 

 

what would you guys do? 

 

 

 

@Smc @Darcy @EOR @greenpea @Former-Member @Sans911 @Snowie @Teej @eth @Sophia1 @Sophie1 @Dec @Maggie  @Corny and everyone....

24 REPLIES 24
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Former-Member
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Re: Do i tell him he has dementia?

I believe @outlander  that the expert advise is that its preferable that someone with (confirmed) dementia be told and educated about their diagnosis.  💜

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Re: Do i tell him he has dementia?

Wow that's a hard situation for you @outlander   I feel reluctant to tell you what you should do as I guess every situation is different.  And also that it should be his doctor or even your parent that has the discussion with him, not everything falling to you who have to bear the brunt of any reaction since you live with him.  Really the doctor's responsibility in my opinion.  And also the doctor's responsibility to arrange community nurses to visit at the very least so that you get some breaks from his needs.  Or a social worker who could arrange various services and supports for you.

I can only speak from experience my family had with my Nanna.  When she was first told she outright denied it, convinced and trying to convince everyone else that it was actually blockages in the arteries in her neck that go to the brain.  The next phase she was really angry about it and took that out on anyone close to her (she had been a widow for several years by then).  My uncle (dad's youngest brother who is younger than me) lived with her for nearly 20 years of her having dementia.  What a saint.  As are you.

I know from another older friend that he said he carried huge pressure about his wife having it for several years, eventually had to get her into a nursing home, and he expressed to me that his biggest relief was when she stopped recognising him which meant he didn't have to be there all the time.  Sad but true.

 I encourage you to do as much research as you can about it and I'm sure there will be online or fb groups for supporters of people with dementia.  I'd also be getting onto your state's carers organisation (if you're in NSW it's  https://www.carersnsw.org.au/about-us/contact-us . I really feel for you and am sending you my warmest wishes as you navigate this minefield.  Perhaps while he still thinks he's joking you could say 'be careful what you wish for Pop' ... wonder how he would take that.  

 

xoxo

 

 

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Re: Do i tell him he has dementia?

Thanks @Former-Member @eth
Im to scared to tell him because of the reaction i get. He acts like a saint at the drs and looks like he accepts it but when we leave its a whole other story. Like last yr when he was diagnosed he seemed ok with it but when we got to the car i wish i had of turned around so they could see the reaction when hes not around other people.
I honestly cant even mention it in the house, to have phone calls i have to sit out in my car because no where is private here any more. I cant even joke about it, i tried it once. When he was having a moment, i responded jokingly with a remark and it wasnt taken well at all.

@eth i honestly wish the gp or his geriatrition would help but they say go through my aged care which is pathetic because of the stage hes in. At this stage he wouldnt get much help. I went and spoke with someone at a meetint that does aged care and gave me another direction to go in but i still have to go through my aged care to try and access it plus it also means more work for me so while its better for him its makes it harder for me, i wouldnt actually get getting a break it would just be travelling around on a bus with other carers and people with dementia on outings and i dont want to do that tbh. Selfish i know.



I cant talk to my mother either. Ive tried and she says ignore it or dont worry about it or speak to the dr about it. The rest of the family is in denial and cant see it because he has a whole other personality around them.

He sees the geriatrition at the end of april so i dont know whatll happe after that. If he looses his license as well all hell is going to break loose.
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Re: Do i tell him he has dementia?

Heart  @outlander 

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Re: Do i tell him he has dementia?

Hi @outlander 

 

This is really rough for you and your family could be kinder to you at least but I really know about your mother and that is a dead end - very little help from her I am sure

 

I read somewhere on-line that it's okay to "fib" to people with dementia because they will forget anyway - and my suggestion is that you say things like this to your Pop

 

"Just because everyone says you have dementia doesn't mean you have - you just have memory loss and you forget things so I will remind you" 

 

"Just because people have said you have dementia doesn't mean you have - you can't act like that because it's dangerous to drive if you forget things like road rules"

 

And if he loses his licence that will mean hell has to be paid but he will not be allowed to drive and that is a hard road but it will have to come to that and right now - I haven't much to say except to hide the car keys which I expect you are already doing

 

His being nasty to you - that's harder - I suggest you walk out one door and come in another - by then his mind is on another track - because he forgets things.

 

And his repeating things - really he forgets - and that is just tough on you - it must be draining and in fact - having your family think it's funny is no reflection upon you or your ability to deal with the situation - it's indicates there degree of insensitivity - it's unkind and isolates you - really hard to take

 

You are a saint to endure this - you are doing your best - my family never discussed dementia of a couple of my grandparents and my mother with me - I walked out on my mother because she was nasty with hers - those she was less nasty with stayed with her - she was in a facility that was very well managed and she was well cared for but high care as well - some people are really nasty with dementia - other people are more gentle - some loveable - 

 

When my son died my father's family told me to lie to my old grandmother in care and not tell her because she was upset but would not remember - for years I had been visiting her every week but during the last couple of years I went less because lying has always been outside my behaviour-rules - but I did lie and found it really hard. Since I read that article about "fibbing" it has been easier to remember because she would have been upset but forgotten - over and over again - and it would have been grossly unkind to her

 

Your Pop though - does seem to have some of his wits about him - changing his personality with your family and his doctors - and when you try and speak about this you get the shove around to My Aged Care - and there is nothing quite like getting the shove around - it's like being is the Hall of Mirrors where you keep finding yourself coming the opposite way - I went through the shove-around trying to get help for my son

 

Why does this exist? It's failure on the part of the various systems that are underfunded and under-manned - not you - not anyone's fault at all really - just that the processes are grid-locked with the need in an aging community to meet the needs of an increasing number of people

 

It's so hard for you - with your family laughing whenever it suits them when they coulfd do their bit but don't. 

 

Respite - yes - you need that - I did some respite work with people with MS a long time ago - university undergraduates do a lot of different work - and I know that carers need respite - even if they take their snacks and smokes and newspaper and go to the back fence and face it totally ignoring the respite carer because this is their couple of hours to themselves.

 

You need that couple of hours - I know this - even if you just sit in your car - two hours with no Pop with his "stuff"

 

And no - don't tell him - he will forget. Tell him you are eating well to stay healthy and prevent dementia - repeating constanly yourself that what everyone says is wrong and he isn't allowed to behave like it

 

It's so hard for you - and even saints were tested - 

 

Dec

 

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Re: Do i tell him he has dementia?

It's a difficult situation you've been placed in @outlander. Everybody is denying it but the truth is right in front of you. You answered your own question in a very thoughtful, sensible way. But you could also frame it as explaining to your pop that it seems that he's having some trouble remembering simple things or things told to him very recently and his behaviour is changing a little. I think it's important too to tell him it's not an excuse for bad behaviour, that's he's an adult and needs to treat others with respect and care. Tell him everyone is trying to make his life easier, not harder or to take things away. That they just want to make sure he stays healthy and safe for as long as possible.

I hope this helps. It seems you are in such am impossible situation that nobody is helping you with. Hugs and hugs ❤️ 💜 💙
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Re: Do i tell him he has dementia?

I think that he should be told @outlander but I am not sure what the best way to do it is, but it shouldn't rest solely on your shoulders, its best to come from a health professional.

 

I think he has to be told so he can be involved in decisions. He may have some private beliefs concerning his end of life care that could surprise you. End of life care plans are on my sibs and I's to-do-list because I want to have the final say, and be involved.

 

Irritability can be a symptom of MI and dementia, but I am not sure what treatments are available.....

 

Corny Heart

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Re: Do i tell him he has dementia?

Well said @Sans911 

 

Dec

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Re: Do i tell him he has dementia?

@outlander  I honestly don’t know what I would do.

Others have given good advice.

All I really want to say, is , it’s you I feel more concerned about. You know the thoughts I have around , all that is expected , ( demanded ) from you. I just wish something would happen, so you were treated respectfully.

Lots of these for you. 💜❤️💙💛💚

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