how on earth do you get family members to understand what a person with alzeimers and vascular dementia is going through when they appear to be totally disintrested !!!!
You can't.
It's most likely because they choose not to know so it doesn't put them under any obligation. It by far the easiest and most selfish way out and I'm afraid you'll find many posts referring to the 'invisibles' here on TP
Hi Julie,ive been down that road with my invisibles,my dad was diagnosed 6/7 years ago.They kept telling me old age but never really saw him when they did he went into hostess mode for the few hours of there visits(im his full time carer) So went to doctors for something to prove his diagnosis to them,she told me that no matter what she gave me it would make no difference. She talked to me about me thinking differently and to just except their thinking otherwise it would affect me .Thats what I now do and have come to terms with this and I feel so much calmer about it all. Goodluck xx
Hi julie
welcome to TP - a really good place to vent the frustration evident in your title
sadly I believe Grannie G is correct - those who don't want to know won't whatever you do
it's such a shame as it reduces the group of people the carer can talk to openly and isolates the person with dementia - and can cause friction when the lack of understanding leads to those who don't know 'knowing better' than those who are facing the reality
if you have the energy, maybe pass along some leaflets, mention Dementia Friends, guide them to some videos on line eg Teepa Snow, tell them about the AS website - get them to care for a few hours?
do keep posting here to get things off your chest
PS just proves the members here understand you - 2 responses whilst I was typing mine
hi i have posted vidoes of teepa snow as i found it very powerful and added them to groups but it doesn't seemed to have made a difference as yet ,as for getting them to care for a couple of hours still working on it !!!
how on earth do you get family members to understand what a person with alzeimers and vascular dementia is going through when they appear to be totally disintrested !!!!
Hi Julie,
Like you, I am caring for a PWD (person with dementia) and am faced with the indifference, or (what feels like) the contempt, of relatives who choose not to get too involved in the day-to-day stuff, but feel entirely free to meddle in the matters that interest them...you guessed it, ££££!!!!
I have come to the conclusion that caring for someone with dementia can hit us in several different ways. Firstly, there is the gradual loss of skills of the person we care for, the distress that causes them (and us), and the burdens that puts on us with regards to day-to-day care.
Secondly, there is the impact on the carer's own life - health, jobs, children, spouses, friends, hobbies...all quite likely having to take a back seat.
Then, and this is the killer for me, the reaction of other close family members, who in my experience have simply CHOSEN not to get involved in the important stuff to do with day-to-day caring, yet they feel justified in expressing their opinions to and about those who do!!! I have one particularly unpleasant sister-in-law who has openly accused me of over-caring. My attitude is that I would far rather be accused of that than under-caring, and beyond that I take no notice of her and avoid contact with her as much as possible. I have come to realise that they are entrenched in their point of view, and there is nothing I can do to change their minds.
Thankfully, I have a loving and supportive husband, and other family members who are very appreciative. I also have a couple of good friends whom I can have a good moan to and who bolster me up! I am hugely grateful for these blessings!
Have a good browse around the threads on this site, to see how people cope with the 'invisibles', or the 'occasionals'. It's a very common theme! There are no easy answers though, as everyone's situation will be different. Hopefully, as you are fairly early on in your journey, your relatives will come to understand the situation in their own way and time, though it may take some time yet. Meanwhile, hard as it may be, stay pleasant and keep the lines of communication open with them. Be honest with them, but keep the discussion neutral if you can (by which I mean, avoid accusing language - you know what I mean!). I hope they respond positively to you, and good luck to you. xx
I've just learnt this good name for the ones who don't want to know. I remember how angry I felt when I was first needing help and support. sadly some of my family and friends (?) didn't get any better but - message of hope - some just took time to get over their own shock and grief and did eventually shape up.
Do try though to go to any groups or outings you can. You'll get your best support from people in your situation. Eth