Where has everyone gone???????

[Libby]

I feel so sorry for my Mum.

Pre AD, she was so sociable – constantly playing bowls, going out for meals – visiting friends etc. Now she’s in a home and when I went in today – on her 78th birthday, she didn’t have one single card. Just where have all her friends gone???

My card looked so pathetic sat all alone on her window – quite ironic since mum spends most of her time sat all alone on her bed. I know that she would have got another card when my brother went in to see her tonight – but nothing off my other 2 sisters, which really upset me.

Eldest sister who lives away e-mailed me to say she was thinking of her, but hadn’t sent a card because didn’t seem any point! I can understand that in a way, but it still really upset me, but then I didn’t feel as though I could actually say anything, because that would have made her feel really bad. I sometimes feel as though I spend all my time trying not to upset people!!!

As for friends – again I can understand that they might find it difficult to visit her, but surely they can remember her birthday and send a card – how difficult is that!!!

I feel so angry and upset, and at at times I feel that some people act as if she's dead and forgotten about already. What a sad sad way to spend your final years

Libs

 

[SusanB]

Hi Libby

What a terribly sad situation and I'm sorry to hear your news. Daft question, I know, but do your Mum's friends know that she's in a care home and do they know the address?

Sadly, they may think that someone with dementia will not appreciate the fact that it's their birthday and all the things associated with it, such as cards. If so, that's appalling!

I'm sure your Mum appreciated your card, though.

Hope you are OK. I expect that you feel quite sad tonight.

 

[TinaT]

The ones who are left with the Dementia sufferer are the ones who feel it the most. It is the most isolating disease I've ever known. I wonder if it has something to do with the unjust stigma against any kind of mental health problem?

I have found that as my husband's carer, I have deliberately isolated myself from some of our former, long standing friends. To get a postcard once in a blue moon telling me they are on a 'cruise' or to get a Christmas card because we are on their list - is an insult to me! When I moved house I deliberately pared down my friends to just 3 - the ones who had stood by me through thick and thin.

This isolation goes even deeper for me. At Christmas I was with a group of my sister in law's friends. One lady sat next to me had been told previously that Ken had dementia. So I spent the whole evening being polite to a stranger and answering the most personal of questions!! I don't want to go out and meet anyone new in a social setting. It is too painful.

I am quite contented with my wonderful 'friends' on TP, and my tiny handful of personal friends and couple of family members who do not need to be told what it is like to care for someone with this disease.

I don't know if my reaction is personal to myself or if others have felt the same.

xxTinaT

 

[CraigC]

I feel so angry and upset, and at at times I feel that some people act as if she's dead and forgotten about already

Hi Libby,

I think many on TP will feel empathy when reading your post. Funny how things work out and how friends slip away (for some of us anyway). It is a strange world. I'm tired of being bitter or angry, but there are those the care and those that don't in my humble opinion - and then there are some of us who get so wrapped up in caring that we lose confidence in the world once in a while. All I can say is that you are in good company and don't need to feel alone.

Over the last few years I've had two almost two identical conversations on the phone regarding mum and dad's new addresses - they both moved into care. Both 'friends' said that they suppose there is no point in sending dad a card or visiting as he probably wouldn't even remember who 'they' were. They were both corrected but to this day they have no idea how much that upset me as a someone who cares. It just felt like they are happy to leave it all to me and remember things the way they were - like dad does not exist - an invisible man. We just need to get over these hurdles and move on. As I say, good company!

Kindest Regards
Craig

 

[hendy]

Hi Libby,Susan and Tina

I can agree with all your sentiments and experiences. Before Dad became poorly, he had lots of friends was quite active and sociable. When he became hospitalised, it was very sudden. his friends seemed to drift away, no, that makes it sound gradual. Nobody really bothered with him, full stop. I had one or two people phone to ask how he was. Then they stopped phoning.

One or two relatives went to see hm from time to time, then they stopped going. Bless him Dads elder brother phoned a few times from Australia, he's died now.

My two other sisters blew him out straight away. I am sure they have their reasons, but they left me with a 5yo and 6 month old baby (who had recently recoverd from meningitis) to sort out the catastrophe and face the terrible times that followed. It was unbearable for me. My Dad would have been completely heartbroken if he had any awareness, but he was too poorly.

I used to ask why? It broke my heart. My husband used to quite calmly reply 'It's their choice' I found it impossibly hard to accept. I reached breaking point a number of times.

Now, I suppose I have accepted it to some degree. Now I just get on and sort things best I can. I did try phoning my aunties the other day. Two are very sympathetic and caring, I think I might have to ring them more often. The other one - couldn't get off the phone quick enough...

As for Birthday Cards. We always send exrras and I get the children to draw some extra ones too, so there is always lots of cards at Birthdays and Christmas!!
take care
hendy

 

[Grannie G]

Since Dhiren has had AD, I find I have to be much more `hands on` with him in order to help him relate to me. I need to be far more tactile, much more direct and say thing to him which he might have found too personal or perhaps even patronizing pre AD.

This change in behaviour works because of our very close previous relationship.

I`m not making excuses Libby, It wouldn`t have hurt anyone to have sent your mother a birthday card and even a small gift. And it is sad that friends slowly disappear.

But we as carers must make the effort to adapt our interaction with those we care for, in order to preserve the relationship. This might happen with other illnesses and conditions, but not to the extent it happens with dementia.

And to some extent I can understand friends and even family backing off. It takes great effort to interact with dementia and not everyone feels able. If they are not compelled to, it is easier to walk away.

 

[Skye]

Last Christmas was John's first in the home, and I sent off our cards early, with a round robin letter giving John's address, hoping that some of his friends and relatives would get the message. None did!

John didn't mind, but I did.

Actually John does get a fair few visits from family and friends, but they all come at lunch time, so that they can talk to me. Nice for me, and I don't think John's bothered. So long as I'm there and his meals, he's quite happy.

What does bother me is when they come in a group, and sit and talk to each other, ignoring John. He may not be able to understand the converstaion, but he still knows when he is being ignored!

 

[connie]

This illness is sometimes a two edged sword.

I guess Lionel is lucky that his circle of friends have never let him down. He receives more birthday cards than me, which is good. When I say 'good' he does not know, but I feel it lets the staff at the home know he is not forgotten.

What I find hard is when neighbours, having asked me how he is, say "please give hime my love/regards". Hard, not for him, again he does not know, but I find that is so sad. They genuinely mean well.

I don't want to always spend my time talking about Lionel, and yet I get really upset and annoyed if people don't ask.

This illness has robbed Lionel of so much. It has also robbed me of all my self confidence.

 

[lesmisralbles]

The ones that matter, matter

and the ones that don't, well don't
Sod them all, bar Aggie.
I have much more in my life than they will ever have
LOVE

Barb X

 

[Margaret W]

Libby, same as me! Mum's birthday today, no cards. I have just posted a message re no cards from my daughters, which I am extremely upset about.

Where did the friends go? I posted them all her new address at Christmas, she didn't even get cards from most, including supposed "good" friends. Fraid it is down to family only, and none of them must be allowed to "not bother". We have no idea what importance things like cards have to our relatives, we must keep doing what we always did, for as long as we can.

Hope you manage to get this across to your family.

Let me know how you do it - I need some tips!

Margaret

 

[Margaret W]

Seems, as usual, we are all in the same boat then. Previous friends are not really friends, some relatives are apparently not very involved. Certainly not taking their share of responsibility. Well, folks, someone said her best friends were those on this website, and I agree!

Shame, but at least we can support each other.

So to anyone's mum or dad whose birthday it was yesterday, as it was my mum's and nobody seemed to care "Happy Birthday". Yeah, I know, I'm daft.

Love

Margaret

 

[germain]

Hello,

It was heartbreaking that my Mum's only sister hardly ever saw her- very active - no other excuses . Her excuse was " she probably doesn't know who I am "

Well, my answer to that was "but YOU know who she is"

It didn't work !

Not sure Mum realised - but WE did !


Regards
Germain

 

[Grannie G]

"

Well, my answer to that was "but YOU know who she is"

That is the point. People are so selfish.

 

[Kate P]

I am, as always when this topic comes up, astounded.

Friends, well friends come and go so it wouldn't bother me quite as much (though don't get me wrong it would still bug me) but family?

How can you not bother to send a card to wish them happy birthday or christmas. Yes they may not remember who you are but we're talking about £1.50 or less to buy and post a card - on the chance that it may mean something to them is it not worth £1.50??? For your own self respect if nothing else.

Maybe I'm very harsh about this but I wouldn't be able to look at myself in the mirror if I ignored any of the events in my mum's life or didn't include her in ours no matter how horrendous her behaviour might be when she is there.

She had no understanding that it was Mother's Day and had no idea at all why we brought her flowers and cards but I wouldn't dream of not doing it anyway.

My dad gets angry that people don't really try and make conversation anymore but I can understand that a bit more because she is completely incapable of communicating and generally just ignores people. It's a practiced art talking at someone rather than with them. I think there's a social element that if you think someone isn't listening you just stop talking.

 

[dedicated doe]

HI Libby

HI Libby,like others on T.P.we are in the same situation,my Dave was always the SMILER in our crowd of friends! but since this dreadfull illness has affected our lives those friends have suddenly vanished and some family too,we love and support EACH other even though every day is getting harder,as long as Dave knows i will always be there for him he is happy and content in his own way and thats all that matters.Be Strong God Bless Doe.

 

[barraf]

Where has everybody gone?

Hello Libby
I am afraid if you are a carer of someone with dementia the heartache of seeing your parent/spouse’s friends disappear goes with the territory.

The only two friends who stuck with us when Margaret developed Alzheimer’s were two who had personal experience of the disease, one had lost his wife with Alzheimer’s and the other her mother.

Our son (only child) visits on a regular basis and comes and sits with his mother while I go out, we see his wife three or four times a year. When Margaret was more mobile I used to take her to visit relatives, but now it is not easy to move her about none of them come to visit us. Were we an embarrassment when we visited them? I ask myself.

Most people who sent cards still do, but Margaret is still at home which appears to make a difference.

The most hurtful thing to me was the fact that Margaret, who had been over the years involved with the church, (Sunday school teacher, Brown Owl, Scout Committee and Mothers Union Committee,) received only one visit from a church member after she became ill, and none from the clergy. I am definitely not a fan of the church.

Thank God for TP is all I can say.

Cheers Barraf

 

[sue38]

I've noticed with my Dad that some of his so-called good friends don't bother with him anymore, and some have surprised us with their help and concern.

I suppose it comes down to the selfishness of individuals, who are only 'friends' for what they get out of the relationship. If a person is no longer amusing or useful (or whatever) some individuals may not see the point in continuing the friendship. It's only then that you realise they were never true friends in the first place.

 

[AJay]

Hi Libby

My Dad has recently gone into permanent residential care. I've already been blasted by two of his 'friends' who were horrified to hear this and because I didn't go all out to keep them informed of every gory detail in Dad's fight with AD (if they'd bothered to ring him a bit more often maybe they'd have realised it themselves). They were cross that I'd not said anything until I'd actually moved him into the care home because they would have liked to have had some input into my decision (!!!!). You'd think I'd had Dad committed to an institute where there are bars on the windows, he's kept locked in his room at all times and he will never see the light of day again. These 'friends' are a good 30 years younger than Dad and should know better.

Despite all their bluster and concern, they've still not contacted him even though his new address and number have been given to them with assurances that they can write/phone/visit him at any time and that he does remember them. I appreciate that they live quite a distance away but it doesn't cost much to put pen to paper, fingers to dialling buttons.

What makes you think I'm bitter????

AJay xxx

 

[gigi]

I know it's difficult..

Before AD Eric and I had a wonderful social life...dinners, parties,golf club..etc.

Our social life has shrunk to the odd meal with close and faithful friends...and my family

I still have my own friends..Eric's friends are older than me..and they are having their own "ageing" problems...When I think about it..before Eric was diagnosed he was having problems on the golf course..remembering names, scores..and some members gave him a lot of hassle over this..out of a group of 20 people..2 have remained "faithful" to him...out of those 2..only 1 now..and we've had no contact from that person for 2 months..

Eric doesn't mind...he really can't be bothered..

I don't mind..I got a bit fed up with explaining how things were..and with their platitudes.."he's fine".."Seems ok to me"

True friends can be counted on the fingers of one hand..they matter..

The rest are hard work..and life is hard work enough without the extra..

I try to look at it from Eric's perspective..if he doesn't mind..why should I?

Sometimes folk find it hard to face illness..and dementia is one of the hardest illnesses to face..

Accept the hand of friendship and support if it is offered..but don't waste your energy bothering about has-beens..

That's my thinking on this!

Love Gigi xx

 

[Lucille]

The ones who are left with the Dementia sufferer are the ones who feel it the most. It is the most isolating disease I've ever known. I wonder if it has something to do with the unjust stigma against any kind of mental health problem?

Tina, you've hit the nail on the head! I also agree with Craig that the feelings carers are left with can make us feel bitter and angry, but we do need to move on. I think the issue is that the ones who stick around are the ones we need to be thankful to; they pull us through and cheer us up when the walls are tumbling down. I'm grateful that I can channel my energy, love and care to the person who is truly the victim of this awful disease - my wonderful mum. There are others who were in her circle whom I suspect are currently searching high and low for their conscience!

Take care x