Is it right to tell people?

[Meercat]

I apologise, as I am sure this will have been discussed before but I would appreciate your advice and experiences.

Mum has Alzheimer's and, due to this, her circle of friends has diminished - I suspect mainly because
1.she hasn't been able to process the skill to phone friends and organise to meet up
2.she's come across as rude when she does see them
3.is no longer able to follow a conversation
4. the friends haven't realised she is ill and actually needs their support and company - I don't blame them one bit - I get the feeling Mum has inadvertedly pushed them away.

It's now come to sorting out christmas card writing - gradually over the years Mum has cut down her sending list but with hindsight I feel this had something to do with her condition. Likewise, numbers received has fallen dramatically.
It is likely the card writing won't actually happen or will only be sent to a selected few (with the help of a friend that pops in sometimes).
I just know that if Mum's friends were told of her illness, they would send her cards which would just give such alot of pleasure - she would line them all up and it would be a constant reminder of the people who are thinking of her.

If I was to send christmas cards on behalf of my Mum with a little insert explaining that she is ill - is this a breach of trust - Mum is in complete denial of her illness but is well enough to enjoy opening cards?

What do I do?

 

[choccy]

It's a tricky one in my opinion. I was very wary about who I told about Dad. I suppose I just didn't want him to be vulnerable. I still haven't told everyone, but now he's in care and safe from any undesirable's I will probably inform them.

I know this sounds harsh, but I'm Dads first line of defense and I would hate for anyone to take advantage. Just before he was diagnosed a local handyman, who he'd known for years ripped him off to the tune of £3000 for a little garden work.

I'm not saying everyone is out to exploit the vulnerable, I'm just aware that some are, friends or not.
If you know your mum's friends and trust them, I don't see a problem in telling them.
I told my Dads good neighbours the truth after he told them he'd been run over hence his visit to hospital... they were fine and carried on as before but with a little extra vigilance.

You have just reminded me actually to start informing people again!

Good luck x
P.s do whatever you feel is right, that way you'll have few regrets later on.

 

[Meercat]

Has anyone informed friends via card/letter?
I don't have access to phone numbers and if I was to phone them I wouldn't know where to start - a phonecall out of the blue from an estranged friends daughter asking them to still send christmas cards and not to say 'How are you - I hear you're ill?' if they bump into mum probably ISN'T the route to go?!!

 

[Meercat]

Thanks Choccy for your reply - I hadn't thought about the 'taking advantage' bit so if I do tell people I shall be careful who I do tell.

 

[Tess810home]

They knew...

Mum's friends have known for some time that mum 'wasn't right'. So when the diagnosis came the close friends who were informed were sad but not surprised. Mum lives with me and I deal with everything for her, so I too am her first line of defence and she is therefore not vulnerable to unscrupulous con artists or anyone who could take advantage of her or her condition.

Mum's friends have visited in the past but she is unable to (a) recognise them and (b) carry on a conversation. They have now stopped visiting and some now ring me to ask about her.

I found it difficult knowing how much to share about mum's condition, but in fairness to her, I thought it necessary for her friends to understand that her change in behaviour is not her fault, also, selfishly, I wanted those who loved her to also know that she was being cared for properly. Mum is quite advanced and therefore, as I said before, anyone meeting her would know there is something wrong, especially her friends.

The decision to share with others mum's condition is totally personal to the individual. I for one am happy that I am not putting mum at risk by sharing and there is no shame in the illness so I feel it appropriate in our case to share with close friends, who are as supportive as they can be in the circumstances.

However, I would add, that in the early stages I would not under any circumstances have shared this information. In respect of her dignity and privacy. I have not removed these from her, Alzheimer's has.

If I ask myself would mum want people to know, the answer is no. But the condition exposes itself. Some friends have cut themselves off completely, I don't blame them and to be honest, mum doesn't miss them as her world has become very small.

As for Christmas, Birthday etc...I have been sending these on her behalf for years (buying my own card also)

As I say, only you can judge when to share, you clearly have your mum's safety and dignity paramount in your decision.

 

[Nebiroth]

I think it depends on the relationship. I would be wary about informing distant relatives or casual acquaintances.

However, I see no reason why immediate relatives or close friends could not be discreetly told that whilst mum isn't well enough to chat on the phone or send out cards herself, she still gets pleasure from receiving cards herself. You do not need to go into any details about the nature of the illness. I am sure that anyone close to your mum will already have realised that something is wrong.

If anyone proposes to visit, I would say that it is vital to warn them beforehand as they might otherwise get a bad shock, or take affront if your mum is rude, etc

 

[Meercat]

I found it difficult knowing how much to share about mum's condition, but in fairness to her, I thought it necessary for her friends to understand that her change in behaviour is not her fault, also, selfishly, I wanted those who loved her to also know that she was being cared for properly. Mum is quite advanced and therefore, as I said before, anyone meeting her would know there is something wrong, especially her friends.................

If I ask myself would mum want people to know, the answer is no. But the condition exposes itself. Some friends have cut themselves off completely, I don't blame them and to be honest, mum doesn't miss them as her world has become very small.

.

Thankyou for this - this is exactly how I feel.

I'm thinking now that, at the moment, as my Mum isn't as far advanced, to go ahead and send cards on her behalf to friends who were close and whom I trust, without any additional note. The fact I've sent the cards will probably re-enforce their thoughts that something 'isn't right' and may prompt them to re-engage with either my Mum or the family.

Next problem is trying to gather names and addresses - arggghhhh!

 

[Meercat]

Thanks Nebiroth - I like those ideas. it's difficult to police visits because unfortunately I live along way away.

I regret not keeping in contact with Mum's friends enough that they woud have my phone number

 

[Chemmy]

Perhaps I can offer another other point of view?

Mum and Dad were very close and long term friends with a couple, and it became clear that the wife was developing dementia, as we'd already had experience of it in the family.

I can remember my parents being flabbergasted that the husband continued acting as though everything was perfectly normal when his wife was clearly acting very oddly when they were visiting. My parents didn't feel comfortable raising the subject but if the husband had allowed them an opening, they would have willingly offered help and support. It did put a strain on the relationship - it was clearly the elephant in the room, as the saying goes - and my parents felt hurt that they couldn't be trusted to deal with this information.

If someone has heart problems or cancer, we don't keep it under wraps and until we learn to talk openly about dementia, it will not lose its stigma. I have been very open from the outset with anyone who asks about my mother. It's not something I feel either of us has to be ashamed of. And by making it clear that you are happy to discuss it, it can help others deal with that "I don't know what to say" dilemma

 

[sussexsue]

I'm coming from a slightly different angle as mum lives with me, so the implications are less. In the previous couple of years she tended to send one person 5 cards and other people none. I went through her address book with her and we decided who she would like to send cards to (with some encouragement from me). I then print off address labels for all the cards and mum writes in each one and we pop them in envelopes - but dont seal them.

I then take them away and add a round robin letter (yes, I know not everyone likes them), along the lines of:

" ***** has asked me to write this for her. ***** remains well this year, despite her Alzheimers continuing to take its toll on her poor old memory. She still likes to walk around the garden and gets taken for drives in the beautiful local countryside.......
.....talk a bit about her family etc."

I have to be honest that I am firmly of the school of thought that Alzheimers/dementia is just an illness like any other and I dont believe in hiding the fact. I wouldnt keep quiet about a broken arm, and to my mind a broken brain should be treated the same.

 

[Meercat]

Thanks Chemmy and Sussexsue - my thoughts exactly, I will however have to be sensitive to family members who have real issues with Mum's illness.

I feel now is the time to let the people know who will have a positive impact on Mum - I know she potentailly has friends who, if they understood the current situation properly, would be on the first bus to pop in for a cup of tea (which they'd have to make themselves after washing the cup!!) and chatter away about whatever to give Mum some company.

 

[Canadian Joanne]

I feel now is the time to let the people know who will have a positive impact on Mum - I know she potentailly has friends who, if they understood the current situation properly, would be on the first bus to pop in for a cup of tea (which they'd have to make themselves after washing the cup!!) and chatter away about whatever to give Mum some company.

That sounds exactly right to me.

 

[Chemmy]

And me. Anything that benefits your mum is a good thing.

 

[Meercat]

Thanks you two.

Card writing is such a little thing compared to what so many of you must worry about - but it so helps to get clear what is right for your own situation - thank-you for listening.

Meercat

 

[Petrina]

I told Dad's neighbours, his taxi company and some people in the local community about his diagnosis while he was in hospital because it initially seemed that he was worse than he was (he also had delirium and it wasn't clear which symptoms related to which). I told people at two organisations he's had a long relationship with. Sadly, he's been too embarrassed to get in touch (he doesn't know I've told them) and I feel a bit angry that one hasn't been in touch with him and the other only wrote obliquely. (It's an organisation that has a dinner at intervals and he was sent an invitation with a "with compliments" slip, so he didn't know whether it was an invitation for him or just for his information. I think it was the former, but he didn't chance it.

I also told an old friend who phoned about him and the friend called again and didn't let on, but they don't talk frequently, so that hasn't helped much.

I think it would be more of an issue if Dad had a lot of friends, but he doesn't, he's a very isolated person and the more so now that he has given up his activities. He does know, however, that I've told a close friend of mine who organises activities he's started going to and he hasn't appeared embarrassed. I don't think he's actually forgotten I've told her, rather he's put it to the back of his mind.

In relation to Christmas cards, most of his old friends are dead anyway, but I may take up the idea of a round robin. Maybe we could make some passing comment about 'forgive me if I don't write very often - you know how memory isn't so good when you get to my age' or similar.

 

[Splat88]

This is an interesting point, and one that i wish I had thought about when Mary was first diagnosed, as it has become obvious over the years that her lack of friends now is probably down to her confrontational behaviour at the onset of the illness. A real poity for someone who worked full time until she retired at 60.
Now, she doesn't have the memory to tell me who all the people are in her address book, and obviously we don't know if they are alive or dead. She is the last of 12 siblings, being the youngest at 90 this year, so no help from them either.
I thought it was sad over the last few years, though in some respects it's a godsend as getting her to write even one birthday card is a major event ( who is this for? ad infinitum, and then putting "from Mary" on the envelope of the last one to her other son.) I think it took all day to do one birthday card, so forgive me if I am relieved that there are only very few close family to do now.
My advice would be to go ahead and let people know if you are sure you can safeguard her, that way at least some people may stay in touch.

 

[tre]

Christmas cards

Last year my mum had to go into residential care in September as she had deteriorated so much with vascular dementia. Dad said he was not bothered about sending any christmas cards as he was really sad but as he has crippled hands and cannot write I had address labels on my computer from previous years. No one on the list was not known to me or dodgy. So, without telling dad, I sent the cards signed by me and in each one put a little insert saying what had happened and that it was me sending the cards this year. I felt if nothing went out people might wonder what had happened. The result was that many friends sent cards with lovely caring messages and several phoned my dad to offer support. After I had sent the cards I confessed and showed him what I had put in. I thought he might be cross but he was fine and thanked me.
Hopefully you will know whether anyone might take advantage and not contact them, but I found friends who were bewildered by the change in mum we much more supportive once they knew what was going on.
My mum died in February and I am about to broach with dad what he would like me to do this year, but if he says no cards I will probably still do the same then own up later.
Tre

 

[Chemmy]

Re. Christmas cards.

If a card doesn't come from an elderly person with whom you're not in close or regular contact, unfortunately there is a tendency to assume that person has passed away.

 

[FifiMo]

I've told my mum's friends about her dementia and her deterioration - i have even asked them to drop her a note or call her from time to time. These are people who she has been friends with for years and they too might have been saddened at not receiving a card from her and wonder what was going on. All of them have been tactful and understanding and as friends, wouldn't do anything to hurt or upset her intentionally. My view is that I am merely doing what my mother would do if she didn't have this illness to contend with. It is bad enough losing your memory and other faculties without having to lose your friends too, because no one has explained to them what is going on.

My mum doesn't seem to be able to write her name this year, so i'm printing labels for her, with her name on, to stick in the cards - that way - i can say she did the cards herself. LOL

Fiona

 

[myheadisinaspin]

in our case when mum was diagnosed she asked to be told the truth and she in fcat told all her friends that needed to know, and so i carried on the list of cards to them, until now that is where none of her frineds have kept contact and whom mum would not be aware of now anyway, so ive stopped, they know where we areand the reason mum cant send etc if they want to know about mum they should come calling me. mum would openly tell people she had alzheimers.