Lack of support from sibling.

[Aussiesheila]

Hi,
I found this site by chance whilst looking at forums in Australia where I live. I realise that its probably not that important that this is a UK site as the issue of Dementia is worldwide and peoples problems are universal, so I have joined to gain support from people in a similar situation to me, and to learn from other peoples experiences.
My Mum is 89 and lives with my husband and I since moving out to Australia to be with us some 2 years ago. We have watched her gradual decline and we are pleased that she is here with us and not living on her own (my Dad died 2 and a half years ago) and coping with this illness. However, there are times when I feel quite overwhelmed with the responsibility we have taken on, one is never quite prepared for the issues and emotions that comes with the diagnosis, and so much has to be learnt 'on the hoof'!
Unfortunately my brother and I are quite estranged due to her choice to come here to me, so this does add additional complications. It seems to have brought deep seated sibling rivalries to the fore, which I find quite hard to handle, it just seems to add unnecessary anxiety. I do try to see his perspective - Mum is now a long way from him, but I feel he is punishing Mum and I for her choice. I feel that if Mum had chosen to live with him then I would have respected that decision and supported it as much as possible from a distance.
Does anyone have advice - guilt is a destructive emotion.
Thanks

 

[janma221]

I think you have to distance yourself from your brother's upsets at the moment you have enough to deal with looking after your mother. You have to put her and yourself first as you are doing the caring. It is a learning curve and something new happens all the time with dementia. You don't have to feel guilty you are doing your best for your mum and are perfectly reasonable in that you would respect your brother if your mum had chosen to stay with him.
There are a few people on here from Australia and they are very helpful and supportive too.
Take care.
Jan xxx

 

[Nanak]

Hi Aussie Sheila
I live in Australia but Mum was in UK. My situation is a bit different as in my family are all in Uk too. I found it very hard to cope at times with Mum being so ill but went home as much as I could.
Frankly (and not to sound flippant) you will have a much rockier road to walk over the next months/years than your brother.
Hopefully he can visit, and as has been said, try not to let his grievances distract you. Your Mum made her choice. None of you could foresee what would happen.
Keep posting on here. This was my lifeline many times through a very difficult time.

Nanak (Kim)

 

[Pennie]

Hi there,

I have an "other side of the world" problem too, but the other way round.

My brother emigrated to NZ at least ten or more years ago, can't quite remember now, and mum and dad used to visit bi-annually and then every year to escape the winter here. My dad died in 2004 and mum carried on going every year until 2009.

My brother has came over in 2010 when she was hopitalised with a broken hip and again in Oct 2012 when she was in hospital again and then diagnosed with Lewy Body dementia. He returned in June this year to give us some respite (we have moved into her house to care for her) rather sadly of the two weeks he was in UK it turned out he was only going to be able to give us four days off - lots of old friends to visit

He does phone occasionally, but often critical of my approach and says mother is much more capable than she appears and reminds me each time that I need to put her in a nursing home for a greater amount of respite time. I feel that she would go downhill rapidly if I did that, or have to spend weeks calming things down and returning to routine. He just gets cross and says I have to think of myself more and she will adjust.

I just don't know whether it is worth it - or perhaps I am not at breaking point yet, otherwise I would.

All mum wants to do is go out to NZ again, but she is nearly bent double with spondilitis and arthritis, moderate/severe dementia and at the moment incontinent - would an airline even take her with me in tow. I just think of airline toilets/departure and transit lounges and come up with a big NO NO.
Besides which, my brother and his wife would be horrified at the idea! They are able to be living their dream life...

 

[Wirralson]

Hi there,

I have an "other side of the world" problem too, but the other way round.

My brother emigrated to NZ at least ten or more years ago, can't quite remember now, and mum and dad used to visit bi-annually and then every year to escape the winter here. My dad died in 2004 and mum carried on going every year until 2009.

My brother has came over in 2010 when she was hopitalised with a broken hip and again in Oct 2012 when she was in hospital again and then diagnosed with Lewy Body dementia. He returned in June this year to give us some respite (we have moved into her house to care for her) rather sadly of the two weeks he was in UK it turned out he was only going to be able to give us four days off - lots of old friends to visit

He does phone occasionally, but often critical of my approach and says mother is much more capable than she appears and reminds me each time that I need to put her in a nursing home for a greater amount of respite time. I feel that she would go downhill rapidly if I did that, or have to spend weeks calming things down and returning to routine. He just gets cross and says I have to think of myself more and she will adjust.

I just don't know whether it is worth it - or perhaps I am not at breaking point yet, otherwise I would.

All mum wants to do is go out to NZ again, but she is nearly bent double with spondilitis and arthritis, moderate/severe dementia and at the moment incontinent - would an airline even take her with me in tow. I just think of airline toilets/departure and transit lounges and come up with a big NO NO.
Besides which, my brother and his wife would be horrified at the idea! They are able to be living their dream life...

An airline might or might not accept your mother as a passenger, but I've seen reference on here to it being done from Australia to UK, but can't find the thread. The Equality Act 2010 prohibits discrimination, but there will be some legal differences in respect of civil international air travel, and the final decision on safety is up to the Captain of the aircraft at the time. However, airlines usually try and be helpful, so if you want to do this, it might be worth calling a couple of carriers or travel agents specialising in disabled travel, or ask your local Alzheimer's society.

Kind regards

Wirralson

 

[Pennie]

are you spurring me on to think about it, and REALLY upset my brother

 

[Nanak]

Hi Pennie
You may find travel insurance hard to get with your Mums problems.
My Stepfather wanted to bring my Mum to Australia for my Daughters wedding in Sept 2011 but was unable to get insurance for her (thank goodness as we didn't feel Mum was up to coming anyway).
Only you know if your Mum would be up to a journey, but from what you have said I would be inclined to agree with you and say no
Nanak (Kim)

 

[Pennie]

Yep, actually she would never be passed fit enough to fly by the doctor, so it is all academic really - nice idea though

 

[lilysmybabypup]

Hi Aussiesheila, I'm in oz too. Yes, many differences in the health system between UK and here, but as you say, dementia has common threads the world over.

I wonder whether your brother could be gently reminded that if he had your mum with him, he would now be bearing the bulk of responsibility for her care, and it is a huge task? These strains in relationships make the job of caring so much harder. It's already emotionally exhausting. You could also point out that your mum is declining, it's important to get as much out of the time left, and his lack of involvement could be a cause for regret on his part in the future.

His being so removed from the situation means he can't grasp the state she is in now and denial is much easier when you're not confronted with the actual caring.

Hope he can get on board and set aside old jealousies for the sake of your family, especially your mum.

Stephanie, xxx

 

[Onlyme]

On a more basic note would your brother want to get I involved in her hygiene issues that will surely follow or would he have left that to his partner? These are the things at the back of your Mum's mind when she decided to move to you. Would he really have been up for all that?

 

[Aussiesheila]

Thank you for your thoughtful replies. It was good to wake up to and read. It helps give me confidence in myself that I am doing what I can for the best. Yes, I think my Mum belonged to the generation that felt it was the daughter that did the caring. And yes too, she would have thought about the fact that my brother is divorced and works long hours so her care might not have been the priority.
You can never quite realise what lies in front of you, my mum was always so full of energy and independence. If Dementia was ever discussed she used to say "Oh shoot me if I get like that"! But it has got me thinking that I want to be proactive in my own long term future, I have a son and a lovely new daughter in law but having seen first hand how my life has changed whilst caring for Mum, it isn't what I want for me or them.
Here in Australia as Mums unpaid carer I have the opportunity to take respite. I have found a lovely residential home (I looked at lots, but knew instantly this was the one when we visited it). Of course Mum is used to me being her sole carer and apart from 5 hours (reluctantly on her part) once a week when she goes to a day club she is with me 24/7. This is where my brother creates a problem. I have accessed respite for my husband and I to have time off to be together alone which I feel as a couple we do need too. When Mum goes into the home I let him know (I did once offer him the opportunity to come out and stay here and look after Mum whilst we went away, but it "wasn't convenient"). He emails me to berate me for leaving her "with strange people, in a strange home, in a strange country". Then spends the time she is there phoning her and sending flowers saying he is "thinking of her". (He very rarely phones her here), then when I return he emails to tell me that having spoken to her she has had a demeaning experience and I need to find alternative care.
It now gets to the point that I almost dread planning to go away. Its hard enough going through the whole process of settling her into Residential Care, as of course she would much rather just be with me, without his hostility to deal with.
After the last experience I did email him back and tell him that I was disappointed in his lack of support as I had changed my life to care for Mum, and to help me understand his attitude would he explain to me how Mum would have lived and been cared for had she chosen to live with (or near) him. He hasn't replied.
Realistically he is probably in denial that Mum has Dementia, I think you have to walk the walk to fully grasp it.
Anyway, thanks for this opportunity to just talk about it!

 

[lilysmybabypup]

Yes, "dementia" means nothing as words on a page or a screen. It's a different and confronting story when living with it.

I've been the worst when it comes to letting go of Dad. He was with Mum, who was developing her own health issues so we just put him into permanent care a few days ago. The hardest thing I've ever done in my life. I was going every day to help Mum, and they had a care package but not enough to make much difference. Anyway, Dad never did respite because we kept putting it off but he was going to a Day Centre 2 days a week which made a huge difference. It was the nights that ended up almost killing Mum and there's little help for that unless you pay a fortune for private care.
I think just make the decisions you need to make your own way, and allow you brother to exercise his opinion once he's actively involved in her care. Be firm because in the end it will be your life, health and well-being to be affected.
Stephanie, xxx

 

[Robstick]

Hi

As you initially said, dementia has no boundaries and from the other side of the world, from my point of view it is interesting to see how different authorities act and what they offer in way of support etc.

I recently read a book called "Keeping Mum" by Marianne Talbot, which is a collection of blogs she wrote for a magazine while caring for her mum with Alzheimer's. IMO it is a very interesting read. There was an accompanying website, which she has recently stopped updating, unfortunately. Marianne, still does talks etc. in the UK on the subject, she is also on Twitter. Her situation was that she was the sibling caring for her mother.

Good luck and best wishes...

Rob