The Invisbles rant!

[Linbrusco]

a common thread

There are days where Mum is quite good, and will ask me questions, and I wonder if I should lie or tell the truth. Do I lie and Mum actually remember and catch me out and get cross with me or do I tell the truth and risk Mum being upset?

With Easter holidays, Mum asked me if she had seen her sisters at Christmas.
I said No.
She asked me when she saw them last.
I said end of November.

Mum is still able to count that between November and almost end of April it will soon be 5mths.
Mums reply.... " I could be dead for all they know"

She was neither upset or cross.

In Mums first stages I spent so much time running myself ragged, reminding Mum to call such and such, or me arranging to take Mum to visit her siblings.
Mums siblings have cars. Mum & Dad don't.
Out of Mums 3 sisters and 3 brothers, only one Aunt has called me in the past year to see how Mum actually is.
They all ring her from time to time, but how much can you really tell from a phone call? Nothing!

Part of me just wants to cut all contact and see how long it takes for them to visit Mum themselves. Maybe by the time they do Mum might not even recognise them , and part of me feels guilty that I should just bite my tongue and just arrange to take Mum myself

 

[Lindy50]

Oh linbrusco, I do sympathise

I have also been down the route of spending days and days keeping mum in touch with her relatives, driving her to see them, etc. I have a brother who lives two hours away, who literally turns up for an hour and a half maybe three times a year....mum's birthday, Mother's Day and Christmas. He has never contacted me to ask how mum is, or how we're managing. I think really he just can't face it. I mean, if he knew how much help she needs, he'd feel guilty at not doing more.....so I regard it as self- protection on his part.

Meanwhile I am grateful that I am able to help mum at least in some ways. I would hate not to be able to do that, and if he feels differently, well...

I am sure you will take your mother to see family as and when it's needed. What I have found slightly disconcerting, is that as time goes on, mum seems less and less concerned about seeing people. As long as we can chat about them, and there is the prospect of visiting 'one day', she seems quite content. This is sad, but frankly easier for me

Hope you find a good balance.

All the best

Lindy xx

 

[Linbrusco]

thanks Lindy from another Linda

Apart from 2 brothers overseas, Mums other 4 siblings live within 15-25mns away.
I could understand if they lived hours away.
Mum is that not far gone that they should be scared of visiting... or perhaps they are?

 

[RobinH]

Why people stay away

Hi Linbrusco

I try to understand why people don't want to see my mum as she is. It is scary, for a start. Most people are scared of all types of mental illness (I know Dementia is a physical illness, but the effects are the same).

Also, for people her age, and even her kids, it's a reminder of what may happen to them. A lot of people simply can't bear to think about their own mortality or decline.

I'm not saying it's right, but I know it took me a long time to understand and accept her illness. In my family, I'm the only one who has taken that time - nobody else ever got past L-plates. It costs - in effort, in tears and in having to face the fact that in 25 years time this could be me.

So I wouldn't bust a gut trying to push water up a hill. As long as they know they can contact you when they want, I would leave it at that. If, later, they say they never realised how bad it was, try to bite your tongue..

Good Luck

Robin

 

[maryw]

Hi Linbrusco

I try to understand why people don't want to see my mum as she is. It is scary, for a start. Most people are scared of all types of mental illness (I know Dementia is a physical illness, but the effects are the same).

Also, for people her age, and even her kids, it's a reminder of what may happen to them. A lot of people simply can't bear to think about their own mortality or decline.

I'm not saying it's right, but I know it took me a long time to understand and accept her illness. In my family, I'm the only one who has taken that time - nobody else ever got past L-plates. It costs - in effort, in tears and in having to face the fact that in 25 years time this could be me.

So I wouldn't bust a gut trying to push water up a hill. As long as they know they can contact you when they want, I would leave it at that. If, later, they say they never realised how bad it was, try to bite your tongue..

Good Luck

Robin

So true Robin....

 

[Rageddy Anne]

Wise words Robin.
Now I look back and try to remember if I might have been more supportive when friends and family needed help, and was I too preoccupied to notice? Everybody is so busy with their lives, and probably don't even stop to think how much a visit would be welcomed.

Most of my husband's friends have disappeared from view since they heard he had Alzheimer's. Someone he thought very highly of died last autumn, but nobody told us, so we missed the funeral, and it was only when we sent a Christmas card that we were told. Sometimes I feel it's us who have become invisible.

Thank goodness for the people who haven't forgotten us. And TP, where we can have a grumble.

 

[Chemmy]

I would tend to agree with Robin too. I've seen it said on here that you can't change other people, only the way you deal with them.

Did they visit regularly before your mum fell ill?

 

[Raggedrobin]

I've been thinking about this a lot, as I have a fairly invisible sister. i have concluded that we aren't all born with the same amount of empathy. I have had a lifetime of trying to get my sister to be kinder and more caring to my parents and after a big blow up a few years ago, I realise she simply doesn't seem to have that gene. And I love that image of pushing water up a hill.

My sis, under pressure, agreed to come and stay up here so I could have a holiday. At the moment I visit mum everyday while she is settling. My sis barely bothered to go and see her while she was up here and I felt furious. She says she finds it exhausting, which it is, listening to mum confabulating, but she doesn't ever think, but what would mum like? and what mum likes is company and to see her family. Grrrr.

 

[maryw]

I have an invisible in my cousin. Previously lots of fantastic holidays together, now the odd fleeting visit en route to the airport. Comments: "I find conversation difficult" "He talks to you in an aggressive manner". No matter how hard I explain the medical conditions, they can't move past the difficulty in having to put some effort in, or it could be fear as they are getting older and have health conditions too .. ...

But the people we made friends with two years ago - oh boy, what friendship, patience, understanding and fun they have brought with them!

You certainly find out who your true friends are!!

 

[Linbrusco]

Thanks for the replies.
Yes they did visit more often, but then Mum & Dad would often catch the train to visit them.
In the past 3 yrs Mum was diagnosed with a slow growing form of Leukemia, and then surgery for bowel cancer last year , and now AD.
I expected a lot more from at least 2 of Mums sisters, who were full of promises after Mums surgery

And Yes MaryW you certainly find out who your friends are

 

[cragmaid]

How about arranging a Tea Party? Invite them all for a specific time and date, saying that Mum is soooo looking forward to seeing them. set the table and cut the sarnies.......yes I know this sounds like a lot of work, then when they get there, say" sorry" point out the tea and say " I've got an emergency Dentist's appointment, I'll be back in a couple of hours or so. I'll see you then.I know you'll look after her till I'm back"" Off you toddle for a couple of hours and they have to spend time with Mum.
Otherwise, just ring them every once in a while, tell them that Mum is still alive, but does not miss them, and you'll ring them if this changes.

 

[Lindy50]

How about arranging a Tea Party? Invite them all for a specific time and date, saying that Mum is soooo looking forward to seeing them. set the table and cut the sarnies.......yes I know this sounds like a lot of work, then when they get there, say" sorry" point out the tea and say " I've got an emergency Dentist's appointment, I'll be back in a couple of hours or so. I'll see you then.I know you'll look after her till I'm back"" Off you toddle for a couple of hours and they have to spend time with Mum.
Otherwise, just ring them every once in a while, tell them that Mum is still alive, but does not miss them, and you'll ring them if this changes.

Maureen, I love this from start to finish!

 

[Raggedrobin]

I notice at the ch today as a bank holiday the place is brimming with previously unseen invisibles talking loudly about how busy they are and must rush off again, with bewildered residents wondering who the hell these people are.

 

[jeany123]

I notice at the ch today as a bank holiday the place is brimming with previously unseen invisibles talking loudly about how busy they are and must rush off again, with bewildered residents wondering who the hell these people are.

That made me laugh, how true

 

[IcareformyMum]

It is my siblings that are the problem!

I am one of 4 children that my Mum has, apart from the odd visit which only started recently I am the only one she see's!

I have a sister who now visits on a Sunday (right on tea time!) - when she is not doing something else,she lives in Bristol. I have one brother who we have not seen for approx 4yrs - he lives in Bristol also and the final brother is currently not working (he is lazy!) he only lives 5mins away but she only see's him when it suits him and it is usually only 30mins they stay as my Dad has started timing it!!!

I think this sort situation within families is so sad - as people tell me Mum will get worse surely it makes sense to spend as much time with her as possible as we are noticing a fairly rapid decline and it will get to a stage that she will not remember who they are and then they will regret it

It's funny how you always seem to see them more regularly when they want something from you!!!!

 

[kingmidas1962]

a common thread

There are days where Mum is quite good, and will ask me questions, and I wonder if I should lie or tell the truth. Do I lie and Mum actually remember and catch me out and get cross with me or do I tell the truth and risk Mum being upset?

With Easter holidays, Mum asked me if she had seen her sisters at Christmas.
I said No.
She asked me when she saw them last.
I said end of November.

Mum is still able to count that between November and almost end of April it will soon be 5mths.
Mums reply.... " I could be dead for all they know"

She was neither upset or cross.

In Mums first stages I spent so much time running myself ragged, reminding Mum to call such and such, or me arranging to take Mum to visit her siblings.
Mums siblings have cars. Mum & Dad don't.
Out of Mums 3 sisters and 3 brothers, only one Aunt has called me in the past year to see how Mum actually is.
They all ring her from time to time, but how much can you really tell from a phone call? Nothing!

Part of me just wants to cut all contact and see how long it takes for them to visit Mum themselves. Maybe by the time they do Mum might not even recognise them , and part of me feels guilty that I should just bite my tongue and just arrange to take Mum myself

My brother is as visible as I think he can realistically manage, living 120 miles away - visits mum every 3-4 weeks, phones every week, always remembers birthdays/mothers day etc and does occasional longer stints such as this weekend, giving me the whole Easter weekend free ...

... so I can only comment really on the lying vs telling the truth - and the tactic I use when I get 'caught out' is to always say that it was my fault and I got it wrong .... as in mum telling me I told her something different a few days previously - and I just say that I got muddled. She doesn't have dementia (as far as I know) but does have mental health issues and can be very 'muddly' - and I think she finds it quite pleasurable that I have got something wrong!

 

[lizzybean]

Yes Maureen, naughty but good

 

[Jess26]

I was disappointed that my brothers two adult sons never visited their nan in the latter stages ( they had previously, although not often)
It wasn't until her funeral when one of them told my daughter that my brother had requested them not to that I realised why.
I assume he was trying to protect them but as they are in their 30's I'm not sure why.

 

[Linbrusco]

Thanks all for your replies.
Well a mixture of guilt & anger got to me and I phoned one of my Aunts up, but nicely said " I feel, you shouldn't take too long in visiting Mum next as she has declined since Christmas".
Told her how she is even mixing up her own grandchildren, and how she isn't safe in the home save for Dad being there and us.
Lo and behold, Aunt said that her and other sister are planning on coming on Friday to visit. It's a public holiday here on Friday, so Aunt thought I would be here too.
No, I am rostered on to work.

In a way without me being there to take charge, and to help steer conversation, they will probably see how Mum really is. I wish I was a fly on the wall!

 

[Witzend]

I was disappointed that my brothers two adult sons never visited their nan in the latter stages ( they had previously, although not often)
It wasn't until her funeral when one of them told my daughter that my brother had requested them not to that I realised why.
I assume he was trying to protect them but as they are in their 30's I'm not sure why.

Maybe your brother felt was protecting his wife's dignity, in that he perhaps knows that the person she was before would not want people who did not need to seeing her like that.

I have felt similarly protective on my mother's behalf and given a firm no to visits, although it was relatives she had not seen in ages and would not know anyway. I knew her former self would absolutely hate them to see her as she is now. Just recently I did not really want my daughter taking her boyfriend when she went to visit - although he is extremely nice - but I knew how her former self would have hated it - especially a young, good looking bloke! But I didn't argue since TBH visits can be difficult and it's usually easier with two of you.