What did everyone do?

[Witzend]

At the beginning what did you do about telling people about your loved one's diagnosis? Mum visited her niece yesterday (we don't have a lot of family left now as many of them have died or don't keep in touch). She mentioned to me on Facebook that mum had repeated the same thing a few times. Also she talks to her neighbours who have mentioned to me they have noticed some confusion. I feel disrespectful to mum telling people so I just brush over it a bit upto now. I know mum would be mortified if I tell people (I know she won't tell people because she doesn't really understand it). Did you tell people or just let them figure it out for themselves?

In my mother's case told everyone who might need to know (neighbours etc.) but asked them not in any circs. to mention it to her, since as far as she was concerned there was nothing wrong with her and it would just make her angry.
I too felt disloyal but when someone might be behaving oddly then I do feel anyone close needs to know so that they can make allowances.

 

[Soobee]

I told everyone about mum because my late dad needed all the help he could get. He had come to me in desperation after covering up for her behaviour for months. She was behaving strangely and because he was ill he couldn't deal with it any longer.

I felt that if people knew they would understand - some did, some didn't.

 

[Chemmy]

Again I mentioned the dreaded dementia word and again she looked shocked like its the first she knows of it and starts asking if she'll need to go in a home.

I never ever said the dementia word to my mum because I knew that if she still had any inkling of the implications, she would be devastated. Trying to explain what is happening is pointless; there also comes a time when trying to ask permission to do things is pointless so if it were me, I'd bring in outside support as a fait accompli, starting with an assessment of her needs.

Perhaps you are giving her views too much priority at the moment, particularly as they are neither in her nor your best interests; your needs as her carer are paramount because if your support becomes untenable, then the problem becomes even bigger.

 

[Witzend]

Again I mentioned the dreaded dementia word and again she looked shocked like its the first she knows of it and starts asking if she'll need to go in a home. I don't really know how to cope and my brother says I'm her emotional crutch (which I have always been anyway).

It's very hard when your instinct says you ought to explain and be honest, but I really don't think there's much point in repeating it. If they believe you they will be upset; if they don't they will very likely be angry, and so often they will forget whatever you've said so quickly anyway.

When my mother wondered vaguely whether there was something wrong with her (not very often at all) I would just say, 'Oh, you're just getting a bit forgetful, never mind.' She was initially told by the GP (I wasn't there, it was my brother) but had apparently forgotten all about it a 5 minute drive home later.

But I should add that by this time I'd already had years of experience of dementia with my fil. In the early days with him we'd tried explaining everything very simply, over and over, only to realise after quite a while that there was no point, since it was in one ear and out the other, pausing only to upset him for the few seconds he was able to take anything in.

 

[Delphie]

I completely agree that there comes a point beyond which trying to involve the ill person in decision making doesn't work. Opinions are no longer arrived at after realistically consideringh options and situations, and more often than not decisions reached can't be remembered. These days I simply arrange the things that need to happen and hope for the best. Mum sometimes complies and sometimes she doesn't.

As for telling people about her Alzheimer's, I just do it. My mum's so odd most of the time and comes out with all kinds of strange things that pretending nothing's up wouldn't work anyway, and my view is that being ill is nothing to be ashamed of. I do it the telling in a way she doesn't know about or notice to spare her feelings because she has absolutely no insight and trying to talk to her about the reality of her situation makes her furious, so I avoid that.

 

[Chemmy]

Satisfy needs, not wants.

These days I simply arrange the things that need to happen and hope for the best. .

...and that is probably a good way to stop feeling guilty further down the line. There are less likely to be 'What if.."s and "If only.."s playing on your mind.

If you can find the resolve to make difficult decisions which she may not like but are in your mother's best interests, then you deserve a pat on the back. You will be able to look back and honestly say "I did my best for her". No-one can ask for more than that.

 

[Anongirl]

I never had the intention of telling her the diagnosis but the psychologist at the hospital told her so I thought maybe it's best to be honest with her. I guess I don't really know what to do so I scratch around for a way to deal with it. One day maybe I'll find the way that gets us both through it.

Today she was so well, she took her tablets without ringing me for reassurance and she went shopping and sounded in good spirits. I just want her to keep that independence as long as possible, I know that's what she wants too. X

 

[Chemmy]

Again I mentioned the dreaded dementia word and again she looked shocked like its the first she knows of it and starts asking if she'll need to go in a home. X

I never had the intention of telling her the diagnosis but the psychologist at the hospital told her so I thought maybe it's best to be honest with her. X

This is just like the other threads we get regularly on TP on whether or not you tell them a loved one has died.

The advice there is usually that you tell them once and you let them grieve (being honest) but then you don't tell them again because (as with your mother) they react to the news as though it's the first time they've heard and they grieve all over again.

I'm afraid white lies or omissions become the order of the day as the disease progresses - telling them something you know is likely to distress them is best avoided if possible.

 

[Anongirl]

I guess I have to get used to all this, I'm not used to not being able to talk to her about everything and anything. We could always talk problems through and reassure eachother. I'm finding that hard to deal with. X

 

[MinnieMouse]

I guess I have to get used to all this, I'm not used to not being able to talk to her about everything and anything. We could always talk problems through and reassure eachother. I'm finding that hard to deal with. X

Hi

With my Mum, I just try and reassure her every time we have the conversation that she has short term memory problems and that it is nothing to worry about, I have to leave her a note saying this as she often says she sits there worrying. When Mum was first diagnosed I asked her could I tell her sisters and nieces etc who were concerned for her and I also told my friends for myself, but I too feel a bit guilty for telling them but they have helped me to cope. I find talking point the greatest help of all and I hope you will too xxxx

 

[FifiMo]

Anongirl,

Can I just say that it is great that your mum still has a measure of independence and is able to cope with getting out and about. This was the very reason we told everyone my mother came in contact with that she had dementia. We passed on our phone numbers and they said they would call us if there was anything to report. It is this kind of support that both of you need and to my mind you are not betraying her if you are doing it for her long term benefit. Not only will it give you the reassurance that you need but it can also bring to your attention any little incidents which might signal that she is starting to struggle in coping with different things. This then allows you to step in and help early on rather than just finding out at the point that a crisis happens. For example, one person from the church phoned us one day to say they were on their way to work at 6am and were concerned to see my mother in the town centre at the bank. Another neighbour the same day told us that she had left the house very early and he thought she was going on holiday as she had a large holdall with her. He said she returned however around 8am in a taxi but that the holdall was no longer with her - this was confirmed by the carers who had been trying to gain access to the house and were extremely worried about her! We then had to start making enquiries as to whether she was starting to wander and spoke to SW and GP about this.

I'm not sure how your mum travels when she goes out and about, but we also told a local taxi firm/driver of her problem and she was given a mobile phone number so she would get the same driver every time. He was fantastic, used to wait for her outside the grocery store and tell her not to worry that he didn't have any fares that morning. He would also drive her to the airport and take her in to the terminal and hand her over to the staff when she was travelling down south to my sisters. Whilst you tend to hear a lot of bad things these days, there are some wonderful people out there who really do care, but you can't find them unless you share what is happening.

To put all this in context, my mother was always in denial. Never once did she mention dementia or accept that she had any ailments at all. Which is fine. She didn't need to know the specifics. We on the other hand did know and did what we could to support her and make provision for her safety etc and this included making sure everyone was aware of what was happening and her limitations.

Hope this helps,

Fiona

 

[Anongirl]

Hi MinnieMouse! I told my best friend where I work first (after hubby obv) and it felt like a weight off my mind but I still feel very guilty discussing it with others because I know how upset she would be. She just wants people to see "her" and not this "problem". I can see her point of view.

Fiona. To my knowledge she walks most places (she has always loved a walk) occasionally she catches a bus but I have no idea if she runs into any problems because I only know what she tells me. I must admit i am always relieved when I ring her and she is at home after going out! If she sticks to a routine of where she goes and how she gets there she seems ok (which is one of the reasons I don't want to consider moving her somewhere she doesn't know). I have thought of putting my phone number in her bag just in case someone else needs to contact me.

I think it's brilliant the way the taxi drivers help, I wouldn't even think of that! Gives me faith in human kindness that does x

 

[fizzie]

I just tell people mum has short term memory loss and that some days it is worse than others. I Loathe the word 'dementia' it reminds me of stories about the old insane asylums which 'contained' lots of 'demented' people. It is such an undignified term and I think it rarely describes people who have this problem. Rant over However I do think people need to know or they treat her as though she is stupid.............they don't even afford her the dignity that they would give to a small child..so short term memory loss does it for us

 

[jeannius]

I just advised people earlier and not close to us that mum has short term memory loss but what is left of her family and close friends know that mum suffers from Alzheimers. There should be no detriment to the person suffering dementia that they have this. I think the world has changed in its views of this disease and that people react kindlier that ever used to in mum's day.

 

[Anongirl]

Fizzie you are so right about that word. I find it so hard to even say it because of the connotations it brings up. I tell people mum sometimes gets confused but the other day a colleague in work asked me why this was and although I started the sentence to tell her I literally could not say the word and promptly burst into tears. Not good.

 

[miklarmour]

Registered Home Manager

Hi all, the more of your friends and niegbours that know the more support out there for you. It is nothing to be ashamed about and more and more suffers are out there.

 

[Anongirl]

Hi miklarmour. I think for me it's not so much about being ashamed of it but in telling people it just makes it all the more real. If you know what I mean?

 

[riveiro1]

There is no right or wrong

My husband began showing signs of Dementia in 2010, it wasn't until July this year he was diagnosed with Alzheimer's/Vascular, mixed Dementia, he is 61yrs.
He deterioated rather rapidly in the beginning and I had to give up work to be there for him, to keep hime safe!
We both felt it should be out in the open and never try to hide the fact that he has Dementia, but it frustrates me so much when people say " he looks ok, no he doesn't have dementia " why would we pretend about something so serious? Sometimes I actually begin to question the diagnosis but then remember the hard work I have 24/7 to provide my husband with the best quality of life I can, even worse when his family are in denial about the diagnosis and actually make me feel I am pretending the whole thing, such a bad wife., maybe that gives them a viable excuse to stay away and not offer any support!!, OMG I sound so bitter don't I, obviously not came to terms yet with the diagnosis.
So should you tell people or not, that is for the individual to decide but be prepared for changes in relationships and attitudes, thank god we have 3 wonderfull daughters who have been a tower of strength

 

[avian999]

Telling People.

At the beginning what did you do about telling people about your loved one's diagnosis? Mum visited her niece yesterday (we don't have a lot of family left now as many of them have died or don't keep in touch). She mentioned to me on Facebook that mum had repeated the same thing a few times. Also she talks to her neighbours who have mentioned to me they have noticed some confusion. I feel disrespectful to mum telling people so I just brush over it a bit upto now. I know mum would be mortified if I tell people (I know she won't tell people because she doesn't really understand it). Did you tell people or just let them figure it out for themselves?

I told everyone that my husband was likely to come into contact with. Rather than let people think he was behaving strangely.
It for me was a kinder thing to do. So I can let him go and bye the coffee when we go out, if he gets it wrong it doesn't matter they help him.
The same as friends they all know and they can deal with being asked the same question half a dozen times.
I think it's kinder all round.

 

[Anongirl]

My mum now won't go into the post office because she said the man who works there made her feel stupid. I'm not sure what happened. I think I'm going to have to go with her and see what exactly went on. These are the sort of things that make me feel sad She has been going in there for many many years so I can't imagine what can have gone on.