Difference of opinion on how best to care

Lilac Blossom

Registered User
Oct 6, 2014
609
0
Scotland
Very sad that your mum has such a poor existence and difficult to improve things without the potential for a massive family fall-out. Could you think of a way of someone, eg SW, just "happening" to call when you are there, so that it doesn't come across as you deliberately arranging the visit, thus maybe lessening the flak for you. Anyone coming into the house must notice urine smell if mum is being left to wear soiled clothing for hours on end so that could lead SW to comment and then point out responsibility to keep your mum clean and fresh, so SW could suggest solutions and even insist on some action.

I imagine that your brother could well be unhappy to see mum like this but desperately trying to do his best but unable to see the way forward. If care worker was organised to come in, say, twice a day it could make such a change for him as well as your mum.
 

Essie

Registered User
Feb 11, 2015
563
0
Hi Bud's Mum, just wanted to say that I (and I'd guess all the other readers/contributers to this thread) hope that the issues you posted about are being resolved and that the current/future situation is looking more positive, both for your Mum and for you.

Best wishes, Essie.
 

Boldredrosie

Registered User
Mar 13, 2012
244
0
Feels like there are two concerns here:
your concern that you are not being able to fully participate in making decisions about your mother's well being (while doing quite a lot of caring) and;
whether or not your brother is a fit and proper person to be caring for a woman with dementia.

Perhaps at this moment in time, the second issue is more pressing and the situation you describe for your mother sounds alarming but I wanted to ask -- did the two of them always live this way? Your brother calling the shots while your Ma foots the bill? This sounds inherently unfair to me but perhaps this is how they've rubbed along?

In terms of the future I really think you need to access some advice, for you as her daughter and one of her carers and for your mum as a vulnerable older person who may not be in an environment that is healthy for her. One of the replies suggests social services and do alert them to your concerns but in my experience they're rubbish. Try your local Age UK or the Alzheimer's Society who will/should be able to give you some advice.

Act now even if mum seems ok-ish. It's a deteriorating condition, as we all know, and you need to plan for the future.

Finally, somebody said you can sort out Power of Attorney without your brother knowing. Not sure you can -- please check. When I got it for mum, as an only child, I let an old friend whose mum had been one of my Ma's best friends know so he could raise any concerns - there's an option on the form to do that. What you want is to support your Ma, not get into a fight with your brother
 

abadam

Registered User
May 28, 2013
29
0
lining up your ducks

Hi Bud's mum,I think you are dealing with an irrational person,influenced by various factors,as you have made clear.I would just like to add that I think,in dealing with a situation where my mother has died and my father has dementia,the absence of parental authority has changed/brought out/emphasised behaviour with very strong negative and non-negotiable undercurrents in my siblings.I believe it is to do with controlling and punishing the parent,and repeating the experience of their childhood with the boot on the other foot.I believe that it happens so naturally that it brings with it a seamless unquestioned plausibilty though it cannot stand up to examination.But it sounds plausible with the plausible bits easily reached for and distracting.The world is full of abusive relationships couched in the plausible.Abuse is very clever.
To deal with this situation,you are going to need protection and lots of lines,which, if crossed will invoke official responses.I imagine you will need a plan with solid foundations for a lot of 'what if' scenarios to curtail and restrain the venom with which your action will be greeted in your encounters with your brother.Hopefully you will have a strong official presence.
Sounds horrible.
it is not prepared for that we have to walk into such negative storms.Unfortunately,with family,and a dependent,you cannot walk away.
Hopefully,I am unduly pessimistic.
 

SueShell

Registered User
Sep 13, 2012
395
0
Orpington
Please, please get power of attorney now! I dont want to distress you even more but your Mum will get worse and worse and if your brother isn't treating her correctly now it will only get worse as her health physical as well as mental, gets worse. You need POA AND get social services involved. Afraid this sounds !like a case of only telling your brother the tiniest of information so he can't have need to object. You need to do right for your Mum and not what your brother wants or needs. Sorry, but your poor Mum shouldn't have to put up with your brothers attitude.
 

Bud's Mum

Registered User
Mar 18, 2015
33
0
Oxford
Hallo Bud's Mum

How are things going? I'm sure a lot of us are wondering whether you've made any progress in your and your Mum's horrible situation... Our best wishes are with you!

Pam

Hi Pam,
Sorry for the silence, and thank you for your support. Quick update; am in ongoing discussion with dementia advisor who is fully aware of situation and my concerns. She has advised me to keep notes of incidents, discussions etc with my brother so there is a written record of what's happening, should it be necessary to produce these in future with social services. She is going to keep in close touch
with both my brother and myself and is being very supportive. Also I have had in depth discussions with my other brother who is proving helpful, and is visiting mum and other brother weekly and keeping a close eye on things. So things are now being monitored by three of us very closely. Next big hurdle is cataract op for my mum early in May. She has been refusing bathing of eyes and I am dreading turning up on the morning of the op (we are taking her there in our car) and her refusing to go, so I really want to get that out of the way before tackling anything else. Has anyone got any advice for getting through the difficulties of easing someone with dementia through a cataract op. It seems really cruel, as if she hasn't got enough problems and then an op on top of everything, but she does read a lot still, and so the prospect of her losing her sight is unthinkable. I will also contact GP for her advice.
 
Hi Pam,
Sorry for the silence, and thank you for your support. Quick update; am in ongoing discussion with dementia advisor who is fully aware of situation and my concerns. She has advised me to keep notes of incidents, discussions etc with my brother so there is a written record of what's happening, should it be necessary to produce these in future with social services. She is going to keep in close touch
with both my brother and myself and is being very supportive. Also I have had in depth discussions with my other brother who is proving helpful, and is visiting mum and other brother weekly and keeping a close eye on things. So things are now being monitored by three of us very closely. Next big hurdle is cataract op for my mum early in May. She has been refusing bathing of eyes and I am dreading turning up on the morning of the op (we are taking her there in our car) and her refusing to go, so I really want to get that out of the way before tackling anything else. Has anyone got any advice for getting through the difficulties of easing someone with dementia through a cataract op. It seems really cruel, as if she hasn't got enough problems and then an op on top of everything, but she does read a lot still, and so the prospect of her losing her sight is unthinkable. I will also contact GP for her advice.

Hallo Bud's Mum:

Thanks so much for the update, and it's great to hear that you've been able to get other people involved, both the professional and the family member. You must be feeling a lot less alone with the situation now. I hope things go well for you all, especially about the cataract op - Good Luck to you all.

Pam
 

Essie

Registered User
Feb 11, 2015
563
0
Hi Bud's Mum, thanks for the update, you sound so much more positive than previously (cataract op notwithstanding...) and I'm so pleased, at least with your other brother and the dementia adviser on board neither you nor your Mum are so isolated which can only be for the good.

Well done on pursuing and making a difference for your Mum.
 

Bud's Mum

Registered User
Mar 18, 2015
33
0
Oxford
Hi Bud's Mum, thanks for the update, you sound so much more positive than previously (cataract op notwithstanding...) and I'm so pleased, at least with your other brother and the dementia adviser on board neither you nor your Mum are so isolated which can only be for the good.

Well done on pursuing and making a difference for your Mum.

Thank you Essie, I do feel stronger for taking some action, and I must say to everyone who has responded (even with views I've found uncomfortable to read!) thank you, you've given me the encouragement I needed. I know there's a long way to go yet, but I'll stick with it. With all good wishes to everyone on here with whatever particular mountain you're climbing.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Hi Pam,
Sorry for the silence, and thank you for your support. Quick update; am in ongoing discussion with dementia advisor who is fully aware of situation and my concerns. She has advised me to keep notes of incidents, discussions etc with my brother so there is a written record of what's happening, should it be necessary to produce these in future with social services. She is going to keep in close touch
with both my brother and myself and is being very supportive. Also I have had in depth discussions with my other brother who is proving helpful, and is visiting mum and other brother weekly and keeping a close eye on things. So things are now being monitored by three of us very closely. Next big hurdle is cataract op for my mum early in May. She has been refusing bathing of eyes and I am dreading turning up on the morning of the op (we are taking her there in our car) and her refusing to go, so I really want to get that out of the way before tackling anything else. Has anyone got any advice for getting through the difficulties of easing someone with dementia through a cataract op. It seems really cruel, as if she hasn't got enough problems and then an op on top of everything, but she does read a lot still, and so the prospect of her losing her sight is unthinkable. I will also contact GP for her advice.

Firstly, I wouldnt tell her beforehand that she is having her op, not until you set off anyway. The time to talk to her and re-assure her is while you are waiting for the op. Make sure she is properly bathed or showered before the op, preferably the day of her op, but if you have to go in early you might not have time on the day, so do it the night before and make sure she has a good wash (especially down below) in the morning. Most eye surgeons are fairly used to dealing with people with dementia and Im sure this will be in her records, but its probably a good idea to remind them when you get there. They may well use a sedative to calm her and there is usually a nurse next to her who will hold her hand and re-assure her during the op.

The hard bit will be the after-care. She will need drops to make sure that her eye heals up properly and a common regime is to put them in 3 or 4 times a day for at least 2 weeks. Some hospitals like you to put a shield over the eye at night for the first few days. I think you will probably have to do this yourself to make sure it gets done.

I hope it goes smoothly, if she can see better it may well improve her quality of life no end.
 

abadam

Registered User
May 28, 2013
29
0
Hi Pam,
Sorry for the silence, and thank you for your support. Quick update; am in ongoing discussion with dementia advisor who is fully aware of situation and my concerns. She has advised me to keep notes of incidents, discussions etc with my brother so there is a written record of what's happening, should it be necessary to produce these in future with social services. She is going to keep in close touch
with both my brother and myself and is being very supportive. Also I have had in depth discussions with my other brother who is proving helpful, and is visiting mum and other brother weekly and keeping a close eye on things. So things are now being monitored by three of us very closely. Next big hurdle is cataract op for my mum early in May. She has been refusing bathing of eyes and I am dreading turning up on the morning of the op (we are taking her there in our car) and her refusing to go, so I really want to get that out of the way before tackling anything else. Has anyone got any advice for getting through the difficulties of easing someone with dementia through a cataract op. It seems really cruel, as if she hasn't got enough problems and then an op on top of everything, but she does read a lot still, and so the prospect of her losing her sight is unthinkable. I will also contact GP for her advice.

It is wonderful how strong,effective support can affect how a situation can develop,and how you can feel about it as a result.
It sounds like you have changed your situation.
Well done!
 

tchuss

Registered User
Apr 2, 2015
7
0
My apologies if this has already been told to you. I have just applied for a power of attorney for my mother. It has to be applied for whilst the 'donor' still has mental capacity. Being diagnosed with dementia does not mean that the person does not know what is happening.
You can apply for POA without your brother being an attorney, but I appreciate with him living at home, this could be very awkward. Also your mother's instructions can be written down to be followed if she loses the capacity to make her own decisions.
Have a look on line at the form . It is a .gov link - cost £110 if you do it yourself - a lot more if a solicitor is involved, but he may be able to give more advice.
 

Bud's Mum

Registered User
Mar 18, 2015
33
0
Oxford
Thank you for all suggestions. The op is this coming Saturday so think about me having a sleepless night the night before! Shouldn't grumble, it's not me having it done.
 

Bud's Mum

Registered User
Mar 18, 2015
33
0
Oxford
Cataract op appointment NOT a success. Having explained in detail all Mum's problems at the pre-op assessment weeks ago, and thinking the hospital was prepared for her, they decided that she would in fact need deeper sedation, and as anaesthetist wasn't working on Sat, op would have to be delayed until later date. So, after getting up at 5.15 in order to get Mum there on time, we came home feeling deflated. There was absolutely no sensitivity to her condition at all, and after finding somewhere quiet to sit and wait, a nurse ordered us to wait in the middle of a crowded waiting room, whereupon Mum started making very candid comments about people's weight etc, really it would have been better if we could have just sat quietly on our own. (I'll be ready to explain that next time) Also the nurse mentioned the D word in front of mum, which we never have, luckily Mum didn't hear so I quickly took nurse aside and explained.With rapidly increasing numbers of us with this condition WHY do some hospital staff have NO IDEA how to speak to, and make sensitive allowances for, someone with dementia?
 

brambles

Registered User
Sep 22, 2014
257
0
NW England
Oh I am so sorry. What an awful experience for you both.

I have had similar problems in the past and found an email to the trust chief executive brought an immediate investigation and a lot of the issues were sorted out, but we shouldn't have to complain.

Brambles x