09-02-2020 10:23 AM - edited 09-02-2020 10:24 AM
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?
09-02-2020 10:40 AM
I believe @outlander that the expert advise is that its preferable that someone with (confirmed) dementia be told and educated about their diagnosis. 💜
09-02-2020 10:48 AM
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.
09-02-2020 11:03 AM
09-02-2020 11:59 AM
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 -
09-02-2020 11:59 AM
09-02-2020 12:20 PM
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.....
09-02-2020 02:06 PM
@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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