Support for anyone with a parent with dementia - drop in for support, a rant, or a cry. All welcome.

[CMOTDibbler]

Welcome to the thread no one wants to be on, but we are all travelling with our loved ones along their journey with dementia.

Thank you CMOT, I fear you are right! I will have to have a heart to heart with my DH and get him to approach his DSIS about this, it is not my place to interfere, although I would for my DMIL's sake. I will keep you updated, thank you again!

Maybe, your SIL may be next of kin but that does not legally entitle her to demand anything. The relevant documentation there would be a health and welfare power of attorney. If she has this, she has a lot of power but reading what you've said about her, i think it's unlikely. That would have required her to look a the situation lucidly a long while ago and prepare for things. If on the other hand she is persuasive/ over bearing, she may bully the home and its GP into stuff that isn't actually in your MIL's best interests eg the battery of tests she's talking about. But in law she has no real power without the POA.

Thank you whataboutbob, you're correct, there is no POA.

My DSIL isn't overbearing at all, thank goodness, but as I said, I just think she doesn't understand. I think she thinks that if they can diagnose an actual medical problem, then DMIL will get treatment and somehow 'get better', (even down to the dementia disappearing).

DSIL is in denial, I am just worried that the Home will do as she requests, even if they disagree. I in no way want my DMIL to suffer and she is on some medication, ABs, I just feel a barrage of tests, which will involve her being taken to hospital is too much.

But I have spoken to my DH this morning and he is going to speak to his DSIS (too far for him to go and see her, we're on the other side of the world) and explain our concerns, thank you for your help and advice.

Denial is common. We each have our own ways of dealing with the slow bereavement caused by dementia.

It sounds as if you as a family have helped ensure that your MILs last years are comfortable, for which you should be proud. It sounds as if your SIL has played a key role. The mother-daughter relationship is not always easy, and dementia can make it a lot more difficult.

It would be a huge pity if tensions between siblings were to increase. I second what CMOT says about your husband talking frankly to his sister about what happens next.

Before you do so you might do your best to understand where your SIL is coming from. Rightly or wrongly she will consider she knows best as she is on the spot and has taken on most of the load. Do you know what is behind the denial? It will be easier for you to have perspective, but what is it about her relationship with her mother that lacks it? Does she is some way need your MIL and so cannot face up to her dying?

It is a difficult one. DB has indicated that should my mother have a medical problem on top of her dementia he would expect her to have top quality private treatment. Should it come to this, my reluctance is likely to stem from the risk that any anesthetic, or prolonged hospital treatment might have on her remaining cognitive function. No point treating if the treatment itself further reduces her capacity. (Plus it will be me organising it!) Hospitals and tests are disorientating, and there is a fair amount of evidence to suggest that anesthesia can cause lasting confusion in elderly people. That said I would probably expect to meet my brother at least part way. She is his mother as well, and I would not want him feeling I had let her die.

Thank you for your advice needsmoresleep. My DSIL indeed needs some sort of affection/recognition from my DMIL, which, quite honestly, is never going to come now.

My DSIL is not a horrible person at all, just someone who has had to endure horrible things. She really is lovely. But I feel that she somehow blames herself for her DM's illness. She thinks she can 'cure' it, make it better. But she can't/won't and I feel this need to get a 'diagnosis' is to reassure herself that she did all she could.

We, DH and I, just think that as long as his DM is fine, not in pain and is coping, then we should do as we are. Who knows which of us is correct? Is it anyone's place to pass judgement, we can only do our best.

Thank you for all the advice and help.

Hi MaybeIwill. I can't add it the good advice you've been given other than to say I'm sorry you're all going through this and nod to the bit about Denial, I had a lot of problems with my Brother on this front.

How is every one doing? Hope you are all getting a chance to enjoy the Easter holidays. I was just saying to DH I feel like we've got our lives back. No phone calls or demands any more and she's relatively accepting of the fact she has to stay there till she can move back up where she wants to be and that we can't make a space happen any quicker.

Drumroll for this next bit, I have announcement ! My Brother is back in the UK, got here a couple of days ago. He's yet to come down and is clearly very worried about seeing Mum and asked if I would go with him. I am happy to and suggested taking her for lunch but he said he might need to work to it. He's clearly built up a picture in his head as to how she is. I'm hoping he'll find her much better than he fears as the CH has got her in a pretty good state of health compared to last year.

I'll never forget what happened but the immense stress is receding and I feel we are moving forward as a family with broken relationships starting to heal. My Dad has decided to send Brother a card and money for his birthday (one of those ending in 0) and I'm hoping there may be a way forward for them too, especially as they are currently in the same city. Uncovering the lies Mum told over the years has been hard and painful but essential to moving forward.

I hope that what has happened to me gives anyone reading this who is a dark place, a bit of hope. Obviously we're not happy Mum can't live at home any more but she is getting some quality of life now where she is and enjoying socialising again (though will strenuously deny that) which is great. Family relationships are starting to mend and I feel that for now we have achieved a status quo though am realistic that there are still hard times ahead.

Hi wynken glad to hear your news I hope things continue to improve for you.
We are enjoying the break from routine. We took mum out last week to the seafront for a short walk and a Mr Whippy! she enjoyed that and seeing the kids and her dog, which we now look after, so a success all round. She still talks of leaving the CH but that is just the way it is at the mo.

Hi Wynken good to get your news and so glad to hear you feel you have your life back. I'm not quite there yet but have had a glimpse of what it can be like. Since the new carers have stepped up to being with Dad for most of the day, the crises have abated thank God. However yesterday was like a return to the bad old days. I gave in to Dad's repeated pleas to come to London and brought him here, i had arranged to meet up with some of his friends at the National Gallery. Basically i lost him in the gallery, the friends turned up late, the NG were not helpful until I found a young staff member who tried to help. In despair I went out onto Trafalgar square and flagged down a police van. The officer put out an alert to colleagues and then to the transport police They found him in Charing X, he'd just decided to go home (but obviously would never have made it back on his own). Then we went for a meal and he asked to be brought home. So bus to King's Cross, train, by this time he was in a terrible state, basically insulting anyone who came close to him including me, turned round in his seat and called the couple sitting behind him "you f888ers", abused the guy who checked his ticket, kept muttering s*t and f*k all the way home. I found myself saying "i'm very sorry about my father, he has dementia" about 10 times. maybe I should just get cards printed up and hand them out.
I have realised there will come a point when the carers cannot cope with him and then it really will be time for a residential home. I also realise i can never bring him to london again, no matter how much he asks to go there. But as I realise this I really don't feel guilty, i feel I have tried my very best for him but the dementia will not relent. It's terrible, even though i know it's the dementia, I found it impossible not to find him personally very objectionable and unlikeable. I told my brother about my feelings and that residential home looms as soon as the carers cannot cope, and he basically agreed. Bro cooked a roast dinner, half an hour afterwards Dad was obsessing about cooking himself some sausages, saying- but I've had nothing to eat. Asked who the hell my bro was, and denied he'd ever cooked him a meal. At some level my brother's mental health problems are at least in part caused by dad, and this ongoing dismissal of him by his father cannot be doing him any good.
Sorry that was long!

A walk by the sea front sounds lovely Wyrd.

Bob, I'm glad you have some periods of normality. Yesterday sounds horrendous though, you must be wrung out. Without doubt you have absolutely tried your best for your Dad, at personal expense. Although very difficult, it's good your Brother is now agreeing. Also that you can be honest about your feelings. If it helps, I have found Mum unlikeable frequently.

It is difficult when you come to a realisation that your parent has damaged relationships in the past but know there is no way you can discuss it with them as they don't have the capacity. I had a bit of a dig at my Mother about something she did after her Dad died. Flipping heck, she totally got where I was going with it very quickly, remembered and brought it up next time saying I had turned on and she always gets the blame. Don't k is wha possessed me really , won't do that again.

Fingers crossed for a calm Easter for everyone.

Bob, what a distressing day for you especially when you were trying to do something nice for him.

I second that Wynken some calm would do us all good.

Update. DSIL came back from her holiday and took DM to the hospital for an X-ray three days later! I was astounded!

I had thought DH had managed to persuade her not to do it but she texted me FROM the hospital so it was a done deal, sigh! 10 days later the X-ray results are not back and DSIL is starting to get angry at how long it is taking.

DMIL is still the same, poorly, sleeping a lot and not eating or drinking very much, I hope she gets left in peace.

Oh dear MaybeIWill, really sorry to hear that. Really hard in that situation for you all.

Went to see Mum yesterday with, wait for it, my Brother ! She didn't really recognise him at first, though hid it fairly well. He could tell though but expected it. She made her usual little digs about me in front of him, though wasn't too nasty. He said in the Pub after he could see what she is like with me so was really good he understands now. There was a big sense of moving forward. All a bit strange but in a good way.

He did also say that the Home was pretty much how he thought it would be and he can see she definitely needs to be there. Her paranoia is very very high right now and she thinks the Deputy Manager is trying to poison her.

Hope the Easter break is going well for everyone.

Wynken, that is such a big development, all credit to you for bringing this about. You deserve. Every bit of vindication you get. I hope this puts an end to your brother's misunderstanding of the situation.
Maybe, I am sorry to hear that SIL is carrying on in her misguided way. Doesn t seem there is much you can do, maybe ask to speak to the home s GP and outline your concerns.
Went to dad's yesterday with the kids. Manageable on the whole, but tiring trying to keep kids happy and handle Dad's needs, feels like we are constantly teetering on the edge of a meltdown , if he s unhappy about something he just gets aggressive and it s horrible especially if in a public place. He started saying he d love to come to London, clearly had forgotten last week,I am resolved never to do that again. Thanks for your support and I hope too that we all have a good Easter.

Thanks Bob, got there in the end and I'm relieved that we can move forward. If we can work as a team it will be better for Mum. In the long run. I think we can.

That must be very difficult handling the kids and your Dad at the same time. I have to admit DS hasn't seen Mum for ages and I can't see that changing. I guess being consistently vague on the next London trip date and side stepping might be the way forward. Really hard to deal with things like, I feel for you.

Can I join, please? Yesterday I moved in with my dad who has Alzheimers, have moved into his house, selling my beloved house. And I feel so lonely, am I allowed to say that?

Hi citrus, welcome. Of course you are allowed to say that you have made a huge commitment and change to your life. You can say anything here.I sometimes don't want to see mum because she isn't herself anymore.
Are you getting any help from the Community Mental Health team , GP or other family.

Wynken,Glad to hear your news one less battle if your brother is on side.

Bob, I feel for you, it's sounds very distressing. My DS finds it hard being around mum I think it's the uncertainty of the condition.I don't take him to the CH. I too have to side step stuff as mum wants to leave the CH. You are doing the best you can, some wouldn't.

Thanks wyrd for your kind words and welcome citrus. I have to say this is overwhelmingly a kind thread and board, (unlike others i have experienced on Mumsnet, ahem..) and you should feel free to say whatever you are feeling and not fear being "flammed " etc.

Thank you wyrd and whatabout .... I haven't started down the road of trying to find support, think I'm still in shock, I knew I was coming to my Dad's of course, the plan has been in place for a few months, but the reality of it actually happening has hit me hard and I feel lonely and overwhelmed. My toxic mother is here at the moment, she and I don't speak, she really is a special kind of poison, she visits Dad every Friday and I truly wish she didn't, the vitriol is so hard to listen to. What I am finding the most exhausting is the constant interaction with Dad, he can't retain any information so the questions are the same time after time after time and every few minutes, it's more or less talking all day long and very loudly as he's deaf and mostly repeating the same thing. He's such a lovely man but of course Alzheimers has robbed him of so much and I feel as if I'm caring for a child in many ways. I saw a friend this morning for a couple of hours in a coffee place that I could walk to, I don't have a car, and it was weird being 'normal' for a while. I hope I settle ok into this and thank you for being there.

Hi Citrus, I don't of course have all the facts but it sounds as if you have taken on a very big commitment. I hope you are building a network of support, in my case that started with dad's gp, getting him onside which facilitated Attendance Allowance and Power of Attorney. Then Admiral nurse (didn't really gel with her, but everyone's different), Home tREATMENT Team to deal with dad's care needs. To varying degrees, kindly neighbours. You absolutely can't deal with this in isolation. I stress I don't live with Dad, but i have had to deal with everything as he is a widower and my bro has mental illness and can't be a carer, altho they live together. I also had weekly counselling for 20 months
Your mother sounds very hazardous and I just wonder whether accessing help eg from counsellor or the like might not be useful.
Good luck, and keep posting here.

Gosh Citrus, I can only echo what Bob says that you will need to find support - dementia cafes or carers groups would be a good start.

Another hospital trip for dad today . A success for the age concern call alarm system. But not for the Social services emergency carer scheme who refused to send anyone to look after mum - fortunatly the private carer they have used before was able to go in 3 times, but feels in future mum won't be safe overnight on her own. Dad is home now, so fortunatly all not too bad

I guess, after reading all these comments, as sad as it is, my Mum is still at the early stages of dementia. It has been exhausting so far, so I now realise I need to stay strong. The only unfortunate side of this, is that it has brought us three sisters together, but not in a good way. We are so different in character and attitude to life, which I find frustrating and wonder if I can get though all of this as my sisters are so unhelpful. One is in complete denial that our mother has dementia and does not visit her. My other sister has been for the past three years trying to take money from her. I cannot believe I have a family like this, but it stems from our childhood and I thought in time of need, all this would be different, but unfortunately the same behaviours are still prominent today.
I am trying to find out what I can do for my Mum, it looks like it will end up me trying to sort things on my own. I am the youngest sister.
I know there is nothing anyone can do, as this is just the way some families are. I guess I was just dreaming that we might get on for our Mums sake, so that we can support her as she deteriorates, alas this will not happen. Just my sad story of my life with my strange family.
I feel lucky that I have a supportive husband, that cares and advises me where he can. And I have a beautiful daughter who is clever and kind.
Dementia and old age makes me sad, but I have to accept this is life.
Sorry if this sounds sad, just needed to get if off my mind!

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Thank you for support. Tonight I had my bag snatched, was walking home from local shop and guy cycled up and snatched it, my whole life was in that bag. Just feel so beaten.

bastard. how awful for you citrus i hope you weren't hurt. post 2mrw . i do agree with bob that you need help and support .

crafy. welcome some of us have unhelpful/unwiling family too so we can understand your situation. say and ask whatever you want you will find alot of knowledge and support here, everyone is very kind.

cmot what a worry. SS a real let down hope your dad is better soon.

CMOT, sorry to hear about your Dad, glad he's back home.

CitrusSun, hi and I'm very sorry to hear about your bag. On top of everything else tht must feel like too much right now. I agree with the others about getting support for you. You're entitled to a Carer's Assessment which is probably a good idea to have done.

Crafty, welcome. Sadly your story about siblings is not unfamiliar to some of us as Wyrd says. It seems that the stress of dealing with a parent with Dementia can kick off all sorts of underlying sibling rivalry.

My Mother's paranoia has ramped up even higher and we're now considering the fact she may need more specialist care in the not too distant future. Brother and i planning to look at the weekend. Meanwhile FIL in Spain is deteriorating and starting to show Dementia like symptoms, Assumably as a result of the Parkinson's. He had a fall last week and things going badly. DH and siblings need to sort something but goodness knows what.