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AIBU

To be full of trepidation about my brother's visit?

(23 Posts)
Gracesgran Fri 17-Oct-14 08:38:22

My brother lives abroad. The last time he visited my mother was two years ago. My mother had been diagnosed with dementia and we had been going through the process of getting her on to the right level of medication to help her. The week before he came I had been through hell with her as, in the nurses words, the increased dose had overstimulated her brain - nice words for a very difficult experience.

My brother speaks to my mother once a week, very late on a Sunday, because of the cost of the phone call. I have 24/7 care for her although I only spend 2 days at her house. I have the support of my daughter who is local (and incredible) and my son, who although he is abroad too will talk me through difficult bits and do all he can, from a distance, to help. My brother rings me at Christmas and the New Year and sends lovely presents. In the view of my children and his "he just doesn't get it".

When my brother came last time he turned all our regular help for Mum on it's head. I tried to explain that she needed routine etc., and I tried to explain about the dementia. His answer was that if she forgot things he could give her joggers to remind her (unkind!). He also said that moving the appointments and our routine was because it was about Mum not him or me. He seemed to view Mum's needs as to be to see him as much as possible while he was here.

He is a bright guy, a professor at a university, and I do understand that he may prefer to ignore mums growing fragility and the dementia (it's her 94th birthday he is coming for by the way) but my level of anxiety (I didn't have one of these when I was young smile) is rapidly climbing and the anticipation of the visit is spoiling the anticipation of my son and his families visit a Christmas. I know I am allowing that to happen but don't know how to find a path to deal with this.

Help, kind gransnetters, would be much appreciated.

Liz46 Fri 17-Oct-14 08:46:12

Could your daughter speak with your brother? She may be able to deal with him less emotionally. I do feel for you as I looked after my mother when she had dementia and I know how hard it is.

Gracesgran Fri 17-Oct-14 08:55:53

She has emailed him Liz46. As you say she is able to put things in a less emotive way and just let him know that "we" have put in place a clear routine to help support Mum in staying in her own home and to help her avoid confusion, anxiety and support her well being. It did sound better than me in tears smile but we have had no reply.

kittylester Fri 17-Oct-14 10:03:11

That seems eminently sensible, Gracesgran and, if he still tries to reorganise things when he is here, your DD can be you spokesperson too. You will have to be prepared for him to be shocked when he sees how much she has changed. It will be difficult for you but don't let it spoil your Christmas with your son.

My Mum has dementia and one of my brothers was always organising things but I think we have him under control now grin. He is local though so it was much easier to manage it. He has gone the other way and now won't even buy mum talc or anything like that, without permission.

FlicketyB Fri 17-Oct-14 10:39:44

He probably doesn't want to admit that her problem is dementia. If your mother is in her 90s, I guess he must be in his late 50s/early 60s. Does he see his future as being like her and does this scare him?

Mishap Fri 17-Oct-14 12:58:45

I worked on a dementia unit as a SW and this scenario is so common. A relative who is not involved in the day-to-day care jets in and wants to turn things on their head, usually through a sense of guilt that they are not in a position to do much, so feel they have to make their mark when they are around.

I think the only way forward is to be blunt, either yourself or via your DD - to say that you have all worked very hard to create a routine that, however imperfect, is working as well as can be, and that you are very concerned that there should be as little in the way of changes or upheaval due to this celebration and the arrival of visitors. Try and get some back-up from the professionals - the CPN etc.

What you do not want is for his visit to leave a detrimental after effect.

You need to stick to your guns and be clear that this is for HER benefit and not yours or his. If he does not like it then he will have to lump it.

Gracesgran Fri 17-Oct-14 13:21:14

Thank you all. When I re-read my OP I felt that the problem was with me really as he isn't going to change. He is a nice person smile but he has always used his charm as a tool, getting into hospital visits out of visiting time, taking me out of school on a none exeat weekends, etc., but it is wearing a little thin now he is nearly 70!

I did try and keep the whole family in the loop with the things we were discovering as we went along, sending a family emails to him, my children and my nieces but he rarely replied. I do wonder if he is worrying about what the future holds for him as you say FlicketyB; I know I do.

Over all Mum manages really well and it is hard to see that her capacity for understanding her own needs is diminishing. She is so frail that I don't want to see her exhausted. Some days even thinking about what she needs to do seems more than she can bear and she seems so tired.

If nothing else I feel better for knowing we are not the only ones in this position. The good thing is Mum is looking forward to her birthday and, of course, that's what really matters.

Grannyknot Fri 17-Oct-14 14:07:16

gracesgran I'm coming to this discussion rather belatedly, but found it very interesting. My MIL has advanced dementia and is cared for in the home of one of her daughters in South Africa. Some of the other daughters do exactly what you've described your brother does on their - quite rare - visits one from the US and one from the UK). They turn everything upside down, make changes to her routine, remonstrate with her carers about her diet (which has been carefully arrived at by the daughter she lives with etc. etc. Well you will know the siuation only too well.

My husband is the only son and he doesn't get involved but we have puzzled over why they do this and I've come to the conclusion that it is a misguided attempt at showing that they too are indeed involved in their mother's care (when in fact they're not).

The one thing I will say is that the "putting your foot down" approach resulted in a massive blow up amongst my in-laws which has now translated into a simmering family feud, with sisters not talking to each other and which looks set to continue as long as my MIL is alive.

annsixty Fri 17-Oct-14 15:55:38

There was an episode in "outnumbered" on tv a couple of years ago which absolutely mirrored the situation here except one daughter arrived from America and was going to move in and look after the Father. She knew what was best for him and gave him freedom he couldn't handle. Fiction I know, but fiction is so often the writer's experience of real life.When she couldn't cope she went back home and left the caring sister to pick up the pieces.I hope you are firm and also that your Mum has a lovely birthday.

Jane10 Sun 19-Oct-14 09:59:11

I assume that you have welfare and financial power of attorney? (or is that only a Scots law thing?) If the worst comes to the worst you could always use this to prevent him making changes to her care. Obviously, this would have to be a real last resort. I reckon things will turn out to be much better than you fear but also that your brother might be quite shaken at how she`s changed. I know exactly what you mean about professional, charming people who are accustomed to getting their way. Good luck!

Gracesgran Wed 12-Nov-14 08:59:54

I am back asking for more help on this but first, to answer Jane10's question, I do have Financial PoA but not welfare. He would not want to make changes to her care. It would mean actually being involved. Currently it is all being provided by me after some awful experiences with quick visits and changes of carer every time they came which set Mum back. Mum's surgery is giving her a Care Co-ordinator (a doctor) so I have high hopes for this although it could just turn out to be a tick box operation.

As we have arrangements to make for the weekend he is here my daughter sent an email (which I have re-read 100 times and it is pleasant and business-like) just to ask if anything had firmed up as we were booking a table for the Sunday.

He replied with a combination of pomposity, arrogance and the shades of a four year old child having a tantrum. I know he is only coming for four days and I should be the bigger person but I really, really want to reply and tell him what I think.

I know I shouldn't but I am so angry and upsetsad

kittylester Wed 12-Nov-14 09:14:19

Rant at us Gracesgran not him. I have a brother a bit like that but, as he lives close, I can 'go big sister' on him and we get over it!

I also have a BiL who came to his home in Devon (from abroad) and while he was here he was too busy to see either of his brother, his daughter or his 3 grandchildren. confused

Rant away and try to get your daughter to stay calm too. You will deserve a medal when he goes home!

Iam64 Wed 12-Nov-14 09:16:15

Good morning Gracesgran, it's no wonder you feel angry and upset. Why do you feel you should be 'the bigger person', because he's only coming for 4 days? I expect it's because you are a nurturing, sensitive and sensible individual, whereas, the description you give of your brother suggests he's a self centred man, used to getting his own way and thinking he knows better than anyone else. It's a pity that his high levels of academic intelligence aren't accompanied by a level of emotional intelligence.

I'd suggest several cups of tea, doing something you enjoy and find relaxing before you do anything in response to his email. This scenario will be sadly familiar to many gransnetters, it is to this one smile

Gracesgran Wed 12-Nov-14 09:53:02

Thank you both. I actually felt really hurt, which is, of course why I want to lash out. When I read it with its "my mother" in every sentence and talking to us as if we (my daughter and I)are his employees, my blood boils and I am just not an angry person.

Apparently he also knows all the ins and outs of the issues with Mum because he talks to her once a week (92% of the time, according to his letter) and she, the poor, darling, 94 year-old frail lady with Alzheimer's, tells him what is going on! No doubt we should use him as our secret weapon for diagnosis in the NHS as he can perform this wonderful trick. He used to ring her at 11.00 p.m. on the same day each week but he has changed this, perhaps because he has finally realised this is to late for Mum, but, as he doesn't let us know (her probably tells mum but she will not remember) when this is going to be she is not sure if he will ring on the Sunday night or if he will ring at all.

Thank you, thank you for being here and understanding.

Elegran Wed 12-Nov-14 10:18:00

Your reply needs to mention "my mother" too, reminding him that he is not an only child. Add something about your constant 24/7 contact with her carers , and the length time you spendface to face with her, and the trouble you have gone to in establishing a routine which gives her continuity and security, and how much she relies on everything being predictable and ordered (like a phone call at a time when she is awake and expecting it!).

If he doesn't understand about dementia (it is more than just forgetting a few things, and jogging her memory won't help!) then put in a link to an online description of her condition "so that he is prepared for what he will find when he sees her"

Asking exactly what his plans are is hardly a question to send him into a strop. Ask again, explaining that if you don't know what he is planning, you can't arrange the rest of your time efficiently.

If he comes back with a similar answer to his last one then - tell him a few home truths! It is time he heard them. Other people don't have to walk on eggshells for him.

Gagagran Wed 12-Nov-14 10:54:59

All my sympathies are with you Gracesgran. My Mum had vascular dementia and got to the point where she didn't know me, didn't remember my Dad, to whom she had been married for 70 years and didn't remember that she had five children.

Despite all that, my elder sister, who saw her once a year on a flying visit, insisted that the only problem Mum had was her deafness. Even when her death certificate showed "vascular dementia", my sister wouldn't have it.

It's hugely irritating but there is little you can do with such intransigent siblings! "There are none so blind as those who will not see". Count to ten and seethe to GN - we understand! flowers

Elegran Wed 12-Nov-14 11:45:56

I have PMed you, Gracesgran

Gracesgran Wed 12-Nov-14 12:27:11

Thank you both. I am sure I am not the only one going through this sort of thing and it will be comparatively short lived. We are talking about dementia more often and there is more in the press, etc., so hopefully, over time, we will all learn to handle these things better.

Elegran, thank you for your message. You are so kind to do that for me. I have written several emails in draft so far and I am sure yours will help me put something together.

In my heart I know that he is feeling hurt because his visit has reminded him that he feels guilty. If only he would talk to me I could tell him that we all do! We set unreachable targets for ourselves - we can't make her better, sadly and after all what can he do when he is so far away - and then, when we feel awful for failing to reach them, we take it out on others. I hope I don't but I am sure do although I am lucky that I can talk to my children and tell them how I feel. I think it is a bit of a man thing too, if I can say that without sounding sexist.

Gagagran, did you ever say anything to your sister or did you just take a deep breathe and let it go?

Iam64 Wed 12-Nov-14 12:54:28

I'm sorry my post was so badly composed Gracesgran, on reflection, the speed at which it was written reflects my own feelings about very recent, similar experiences.

It seems to be the case, that a small number of people feel they know best about the elderly relative, usually a mother, that their sibling cares for. Look after yourself, and try not to get too cross. I got so cross recently, I'm sure I've lowered my immune system and got a rotten cold that may be morphing into a chest infection. Think on! Don't do what I did, bottle up my angry feelings so they could multiply. I'm sure Elegran's pm will have provided her usual calm, strong wisdom.

Gagagran Wed 12-Nov-14 13:12:24

Glad these posts have helped a bit Gracesgran and hope you manage to sort out your brother.

It is impossible to do that with my elder sister, who is a fount of all knowledge. She is not interested in anyone else's opinion and I just gave up trying. It's just too wearing trying to get through to her so I don't. She may well think Mum died of deafness despite what the death certificate says. If so, there will be no shifting her view.

Good luck and remember you are not alone with a difficult sibling! wink

Gracesgran Wed 12-Nov-14 13:26:09

flowersflowersflowersflowersflowers

Thank you all. I may be back on this one, until then brew

Sweetness1 Wed 12-Nov-14 23:04:54

A brilliant, helpful forum to read is Talking Point on the Alzheimer's site. It covers every aspect of people's experiences of dementia,including siblings lack of understanding of this disease!

Gracesgran Thu 13-Nov-14 12:11:55

Thanks Sweetness1 I'll have a look. I have been on the site now and then but I probably need to look in more depth.