Do you find people don't understand?

[Bubble82]

Hi everyone,

Just wondered if you find some people don't understand?

Mum's old best friend asked me after they'd been over to see her last year if I thought she'd like to go out for lunch.. I said no as Mum doesn't like to go out. She's been going to a Dementia club locally for 5 hours one day a week but that's very recent, but she isn't always keen & I don't know how long that will continue for.

Mum generally likes to stay home, when we first went to the Dr's last July 2017, the Dr said to me she would say Mum was more moderate stage.

She since got diagnosed in January with Alzheimer's & Dr's have said on a few separate occasions she doesn't have capacity.

Anyway fast forward, and my friend asks me if I thought Mum would be up for going out locally for lunch... Again! With her Mum, Mum's old best friend & us..

Why don't they get that I would like nothing more than to go out for coffee & cake & reminisce about the good old times with us all, but the reality of it is I don't feel it's a reality anymore.

I find it upsetting that I feel they either don't understand or don't listen. I'm not being harsh, I'm being honest & real - or so I like to feel I am. I honestly don't think Mum would cope with the noise and all the people.

She doesn't talk much, and when she does it doesn't make much sense. She's also double incontinent. She can get angry & aggressive, which I know part of the condition. I just don't want to be put in a situation where things can go very sour, very quickly.

There always welcome to visit Mum at home. I just don't see why when I explained all this last year, they are asking me again, it doesn't get better, only worse..

I don't want to always feel like the bad person, but I have to do what's right for Mum.

Thanks for reading & listening to me, it's nice to have others who hopefully understand!

 

[Jale]

Hi everyone,

Just wondered if you find some people don't understand?

Mum's old best friend asked me after they'd been over to see her last year if I thought she'd like to go out for lunch.. I said no as Mum doesn't like to go out. She's been going to a Dementia club locally for 5 hours one day a week but that's very recent, but she isn't always keen & I don't know how long that will continue for.

Mum generally likes to stay home, when we first went to the Dr's last July 2017, the Dr said to me she would say Mum was more moderate stage.

She since got diagnosed in January with Alzheimer's & Dr's have said on a few separate occasions she doesn't have capacity.

Anyway fast forward, and my friend asks me if I thought Mum would be up for going out locally for lunch... Again! With her Mum, Mum's old best friend & us..

Why don't they get that I would like nothing more than to go out for coffee & cake & reminisce about the good old times with us all, but the reality of it is I don't feel it's a reality anymore.

I find it upsetting that I feel they either don't understand or don't listen. I'm not being harsh, I'm being honest & real - or so I like to feel I am. I honestly don't think Mum would cope with the noise and all the people.

She doesn't talk much, and when she does it doesn't make much sense. She's also double incontinent. She can get angry & aggressive, which I know part of the condition. I just don't want to be put in a situation where things can go very sour, very quickly.

There always welcome to visit Mum at home. I just don't see why when I explained all this last year, they are asking me again, it doesn't get better, only worse..

I don't want to always feel like the bad person, but I have to do what's right for Mum.

Thanks for reading & listening to me, it's nice to have others who hopefully understand!

I think that it is possible that they think they are helping by offering to take your mum out, their hearts are possibly in the right place but they don't fully understand the effect that dementia has on not only the PWD but also their carers/loved ones. Having said that I agree with you that you shouldn't have to keep explaining, perhaps if you could get your hands on some literature and get them to read it they might have a bit more understanding.

Take care

 

[Bubble82]

Yes I think you're right, I think I just feel as I already explained it & they ask again.. You just feel so sad..

She even cried last time she saw Mum, she just couldn't believe it. Mum wasn't aware. Mum just kept reading the same thing over & over again & telling the same thing. It's very sad.

Thanks for your reply & Take care too.

 

[canary]

Im sorry to say that I have discovered that unless you have experience of caring for someone with dementia you have absolutely no idea what it is like. I have lost so many friends since OH has had problems, but have also gained others who know what it is like.

 

[love.dad.but..]

Yes I think you're right, I think I just feel as I already explained it & they ask again.. You just feel so sad..

She even cried last time she saw Mum, she just couldn't believe it. Mum wasn't aware. Mum just kept reading the same thing over & over again & telling the same thing. It's very sad.

Thanks for your reply & Take care too.

So if it upset her she has to some extent realised that the illness is there but not taken on board the impact the illness has on your mum. I think it is difficult for friends/family to fully understand unless they have been a sole carer for a pwd 24/7. Literature may help if you can be bothered but even then the information given maybe cannot visualised or applied to someone they know.

 

[Bubble82]

Im sorry to say that I have discovered that unless you have experience of caring for someone with dementia you have absolutely no idea what it is like. I have lost so many friends since OH has had problems, but have also gained others who know what it is like.

Yes I can imagine! So sad really, It's not easy is it.. and as you say, people can listen but I'm not sure all understand.

 

[Bubble82]

So if it upset her she has to some extent realised that the illness is there but not taken on board the impact the illness has on your mum. I think it is difficult for friends/family to fully understand unless they have been a sole carer for a pwd 24/7. Literature may help if you can be bothered but even then the information given maybe cannot visualised or applied to someone they know.

It's a tough one.. Hopefully the messages I sent back just explaining that I don't feel Mum's up to that anymore. I also sent a link for the toddlers take on Dementia - as I also found that an interesting watch. I'd love nothing more than to do these things, it's just so sad.

 

[nae sporran]

Hullo Bubble82. I know how you feel, OH's children just don't seem to quite grasp what is going on with their mum despite numerous conversations. You have to do what you can to protect your mum, the day centre has to be a priority for yourself as well as it gives you some respite.
I have to say some people in my Ramblers group are very sympathetic, but until you see the day to day impact of dementia it is hard to grasp how hard it is for the person with dementia.
Keep your chin up and keep in touch.

 

[Rosettastone57]

Im sorry to say that I have discovered that unless you have experience of caring for someone with dementia you have absolutely no idea what it is like. I have lost so many friends since OH has had problems, but have also gained others who know what it is like.

Totally agree. Unless you see dementia in action ,it's often just dismissed as a few memory problems. It's just so much more

 

[Amethyst59]

I’ve recently heard that previously very close friends of my husband won’t visit him now. I wonder if they think dementia is catching. I’m furious and hurt on his behalf. His explanation is that they must be cross with him.

 

[karaokePete]

I think that its often the case that people don't know what to do. I've had experience of this and find people are both relieved and pleased to help when I tell them that just having a chat with my wife to provide a bit of social interaction is enough.

I'm an intelligent enough individual, yet until my wife's diagnosis I knew almost nil about dementia so I just assume that others are the same as me and just need a bit of info so that they can see how to proceed.

Of course we have to remember that fear can be a big factor. The biggest dementia risk factor is old age and most of our friends will, like us, be getting older. Maybe they don't want a close up view of their possible future. A regrettable, but somewhat understandable reaction.

 

[DollyBird16]

@Bubble82
I empathise, sadly unless you are in it’s so hard to understand. Not only have Mums friends disappeared, apart from two (one with dementia and the other a long standing friend who moved and remains a phone friend) my ‘friends’ have too.
Promises are made by many, I’ll pop round for coffee, We’ll go out for lunch and so on, hmmm been waiting for a few years now.
It’s a sad and hard way to learn who your friends truly are.
But I do ask myself, did I understand before Mum got bullied into this, no I didn’t.
I now have some amazing friends through this forum (TP), who make me laugh, listen to my miserable moments, my rants, we chat about nonsense and I aim to return the same.My New Year’s Eve was celebrated this year on TP, I planned to ignore it, Mum in hospital at the time, but dear friends here had me laughing out loud.
Our lives change over the years, but dementia tips it upside down, spins it around and gives it another good shake for measure and then stays around to do the same over and over, but how we hold on and keep some order throughout it all. Hats off to us, we love and care through it all.
Take care. X

 

[Bubble82]

Thanks everyone for taking the time to reply..

It's so sad really, luckily my friends have mainly remained the same & supportive I see them no more or no less, so that's good with me.

@Amethyst59 that's so sad to think he think his friends muss be cross with him..

@DollyBird16 Mum's friends she had, don't visit much anymore either. They had loads of so called friends from the local pub where they both drank, one used to call me to ask how she was, although I was never sure if he wanted to genuinely know or just the gossip for the pub - sounds harsh I know. Nothing anymore. People say they'll visit & don't, I get it's not easy I think it's actually soul destroying most of the time. Luckily her sister, who is a big help to me comes to visit weekly & more when we go on holiday.

@nae sporran You're right I think if people don't see it first hand the don't understand. Hopefully they may one day. It does get exhausting keep trying to explain. Even with health care professionals sometimes, the Dr's surgery even up until a while ago would ring Mum & make appointments with her, I'm just left thinking are you serious!? Do you expect her to remember, or turn up. Makes is so much more stressful for us.

@karaokePete You're right I think it does scare a lot of people, especially if they are a little forgetful their selves, Mum is only 68 so quite young really & has had the memory problems I'd say for a good 4 years. No one likes to think they'll end up this way.

 

[Witzend]

I think the trouble is often that people who haven't lived with dementia, tend to assume that because the person enjoyed certain things pre dementia (e.g. going out for lunch, maybe rather noisy family get-togethers with a lot of people) that they will still enjoy them. They don't understand that the person can no,longer cope with noise/extra people, and that a change of environment can unsettle or even considerably agitate them.

The other trouble is that when you try to explain, they can't or won't accept it! 'Oh, I'm sure she'd enjoy it!' etc.

It can be very difficult remaining firm, when people think you're just being a bit awkward or over protective - or maybe even that you just can't be bothered to take them or get them ready.

 

[witts1973]

I think the trouble is often that people who haven't lived with dementia, tend to assume that because the person enjoyed certain things pre dementia (e.g. going out for lunch, maybe rather noisy family get-togethers with a lot of people) that they will still enjoy them. They don't understand that the person can no,longer cope with noise/extra people, and that a change of environment can unsettle or even considerably agitate them.

The other trouble is that when you try to explain, they can't or won't accept it! 'Oh, I'm sure she'd enjoy it!' etc.

It can be very difficult remaining firm, when people think you're just being a bit awkward or over protective - or maybe even that you just can't be bothered to take them or get them ready.

I can identify with that completely

 

[Sirena]

Of course we have to remember that fear can be a big factor. The biggest dementia risk factor is old age and most of our friends will, like us, be getting older. Maybe they don't want a close up view of their possible future. A regrettable, but somewhat understandable reaction.

I think you're absolutely right about that. My mother (now in a care home) had several close friends and only one of them is still in touch with her. Since she started to really deteriorate her other friends have behaved as if she's radioactive - they are in their 70s and I suspect they wanted to block out what was happening in case it was a view of their own future. One friend recently contacted me about forwarding some mail - she did not even ask how my mother was. The friend who keeps in touch has a husband with Alzheimers, so genuinely understands.

 

[kindred]

I think you're absolutely right about that. My mother (now in a care home) had several close friends and only one of them is still in touch with her. Since she started to really deteriorate her other friends have behaved as if she's radioactive - they are in their 70s and I suspect they wanted to block out what was happening in case it was a view of their own future. One friend recently contacted me about forwarding some mail - she did not even ask how my mother was. The friend who keeps in touch has a husband with Alzheimers, so genuinely understands.

Radioactive!! What a brilliant and so true description. And yet, if some of my friends had just popped in for five minutes, I mean this, five minutes when my OH was still it home, he would have lived on that for the rest of the day. If only people knew and cared. Thank you. Warmest, Kindred.