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Is this the end of my road?

Esther Endotether

Registered User
Mar 4, 2019
11
Hello kind people

I have just been reading some posts and realised I have not posted since March last year when I was in a stressed state with my mum and dad!

Well guess what? Its all got worse! My dad has now got a diagnosis of Alzheimer’s disease and had a minor heart attack in May. The hospital stay was dreadful as he was SO confused and I had to organise a family rota to buddy him to take the pressure off the ward staff. Two good things came from the admission: we got referred to the psychiatrist and dad’s driving license was revoked… a relief to all.

Since March last year the disease has steadily progressed, although dad has no insight at all and thinks he’s on top of everything.

My mum who is tetraplaegic after a serious accident 7 years ago has also become physically frailer.

I backed off from trying to persuade them to come stay close to me and just did my 2/3 days per week.

However, things are deteriorating so much – dad will not consent to the other carers making food before they leave; the kitchen is not hygienically clean despite having cleaners once weekly (mum will not consent to twice weekly as all is fine!); ready meals are being served up still frozen in middle; either no dinner or half a ready meal for one; dads clothes can be stained and he doesn’t seem to notice – he was always so fastidious; he doesn’t understand money anymore; he can’t write any more or read any more – he was a voracious reader and he mons about all things and everything as does mum.

I am doing my best – I suggest plans to resolve the issues, they decline the solution.

Dad’s mood swings are becoming difficult and mum has not got a good way with him, tending to shout orders, which does not go down well. Mum is very demanding since her accident and although she could help him more by prompting and encouraging nicely, she tends to stick to the negative and shout/demand/humiliate when he gets it wrong/

I have suggested for some time they need a buffer in the house and wish I could pop in daily but a 2-hour commute each was makes this impossible.

My mum is obsessed with saving money and has cut down the private carers time (they are not doing a great job any way as mum and dad don’t like to ask toom much of them and send them away early every day anyway). They wait till I arrive on a Wednesday and I get all the tasks to complete for the week.

After my mum’s accident she got a considerable insurance pay-out. As she is considerably disabled and we knew my father could not look after her (also knew dementia was slowly progressing) it was agreed that they would come and live next door to myself and my husband. I gave up my job (which was local for me and I really enjoyed) to look after them. They matched my salary for me to leave, with the plan being I would be next door, would manage the care package for both of them, do the cooking etc etc – just hold it all together and hopefully ensure they both did not go into nursing home care.

Once I had burned my boats and we had spent £25K on half of the panning/architect’s fees for planned build, they pulled out. That means that I have to travel 2 hours there, stay over and travel 2 hours back, with additional visits as and when one of them ends up in hospital. Then I have to stay over 24/7 for as long as the crisis remains.

My dad used to do a lot of housework and clean up but he is now not able, SO I clean the house, I do the shopping, I prepare food for re-heating when I’m gone and cook good nutritious food when I’m there, I take dad out to give mum a breather from him and try to respond to all their moans groans and keep everyone happy.

I get no thanks or appreciation. My husband and I did Xmas and New Year and have done both with them for the last 7 years.

Last March with mum nearly dying I tried to persuade of need to move to make it easier on me. How selfish of me! At that time my aunt and uncle visited and persuaded/advised them it was not the right decision so they changed their minds!!

Now as dad is getting worse and it is having a negative effect on Mum…. Mum was weakening and phoned her lawyers to discuss the possibilities of going ahead with the house.

Then guess what: said aunt and uncle appear, there is lots of conflict and all of a sudden, the decision is that they will NOT go ahead with the planned house.

I feel so frustrated and betrayed by my aunt and uncle…. Who visit every 6/7 weeks for a weekend and don’t do any of the hard work.

I feel I am constantly trying to find solutions for problems that they won’t accept, but I am somehow responsible for their satisfaction/health/well-being etc. I feel blocked at every turn and corner and it is starting to turn me into somebody else, who I don’t recognise.

I feel depressed/low/angry/frustrated/used/abused …….. and guilty because I can’t fix it!

This is maybe horrifying to anyone reading this (and God knows it horrifies me too) but I think I am going to resign my job with them and leave them to it.

Is that cruel? I feel so disloyal doing this.

I think there might be a little plan on the go with said aunt and uncle. Uncle is already saying my dad should go into nursing home, then mum could have live in carers and just visit dad every day which would be good for mum as it gets her out daily! Guess who live ins are planned to be?

Only fly in their ointment is that my brother and I have continuing POA welfare and financial for Dad. We will not consent to him being put into a home, as he always stressed, he did not wish to do this and I promised to support to prevent either of them going this way.

However, I think I am going mad and need to get out, although the reason I had to give up work in the first place was I was always getting emergency phone calls and having to rush away over for sometimes protracted periods and it became unsustainable as I was messing my employer around.

I have been here before, when I think I have to bow out and return to full time work but always hesitate as I know I will still get the emergency phone calls and find it difficult to say NO…. get on with whatever. My husband and I are their only support. Who will help them if I turn my back on them?

I feel so conflicted.

Does anyone have any words of wisdom apart from shooting me?!!
 

canary

Registered User
Feb 25, 2014
11,617
South coast
Oh sweetheart, you have tried so hard, but you just cant win with dementia - it will take everything that you sacrifice for it and still want more.
I think the crux of your problem is this
We will not consent to him being put into a home, as he always stressed, he did not wish to do this and I promised to support to prevent either of them going this way.
It is a promise so many of us make, but it is a promise that cant always be kept.
You know that they are not safe. You cant continue with the level of care that you are providing. Something will have to give and I hope it is not your health. It is time to stop enabling their wants and start implementing their needs.

I really do think that (on paper) your aunt and uncles idea is a good one. I think that deep down you know your dad aught to be in a care home, and this way your mum will also be looked after. You asked what would happen if you just walked away and I strongly suspect that they would both end up in a care home.
You will need to oversee this (if it goes ahead) and it may well be that your aunt and uncle discover that they have bitten off more than they can chew, but it might work. Dont dismiss any possibilities out of hand.
 

Jaded'n'faded

Registered User
Jan 23, 2019
659
High Peak
Well you can't continue with things as they are.

Whatever 'promises' you made to your dad or mum, this was done at a time when no one knew what their needs would be. You may think keeping them at home is the right thing to do, but is it? There comes a time when their needs are far more important than their wants and you need to keep them safe. I don't see how you can do this if they remain at home.

Ignore the interfering aunt and uncle - you have LPA so they can't do anything without your say so. I do think resigning from your care position and stepping back is the right thing. Meanwhile, organise a care needs assessment for them both and please, start checking out care homes. You could always move them to a home near you so you could more easily keep an eye on things when you visit.

Unfortunately your mum and dad are only going to deteriorate - the time for independent living has gone now - they need full time care with a team of professionals.
 

Hazara8

Registered User
Apr 6, 2015
416
Well you can't continue with things as they are.

Whatever 'promises' you made to your dad or mum, this was done at a time when no one knew what their needs would be. You may think keeping them at home is the right thing to do, but is it? There comes a time when their needs are far more important than their wants and you need to keep them safe. I don't see how you can do this if they remain at home.

Ignore the interfering aunt and uncle - you have LPA so they can't do anything without your say so. I do think resigning from your care position and stepping back is the right thing. Meanwhile, organise a care needs assessment for them both and please, start checking out care homes. You could always move them to a home near you so you could more easily keep an eye on things when you visit.

Unfortunately your mum and dad are only going to deteriorate - the time for independent living has gone now - they need full time care with a team of professionals.
What you most certainly do NOT want is "emergency respite". I alas experienced just that and was 24hr care living with my late mother at the time. You hold POA which is important. One always focusses on "best interests" even when there appears to be conflicting emotions. This is never a game as you well know and there comes a time when "continuity of care" becomes both essential and positive. Siblings, relations, close friends can innocently offer advice and gut reactions - but dementia requires scrutiny and non-stop care. The Care Home can resolve much angst, albeit not a panacea. It seems quite clear that you have stepped beyond the call of duty in as much as you are becoming frustrated and probably exhausted by various external factors. Here on TP you will find a whole world of situations like your own. Many can be genuinely tragic. Only you can gauge your own situation and only you as "carer" should guage " best interests " which often benefits from professional assessment to enable a truly positive outcome. Dementia knows nothing whatsoever about sentiment or emotions - that is a luxury for those who fortunately are living free of this uncompromising disease.
 

Esther Endotether

Registered User
Mar 4, 2019
11
Oh sweetheart, you have tried so hard, but you just cant win with dementia - it will take everything that you sacrifice for it and still want more.
I think the crux of your problem is this

It is a promise so many of us make, but it is a promise that cant always be kept.
You know that they are not safe. You cant continue with the level of care that you are providing. Something will have to give and I hope it is not your health. It is time to stop enabling their wants and start implementing their needs.

I really do think that (on paper) your aunt and uncles idea is a good one. I think that deep down you know your dad aught to be in a care home, and this way your mum will also be looked after. You asked what would happen if you just walked away and I strongly suspect that they would both end up in a care home.
You will need to oversee this (if it goes ahead) and it may well be that your aunt and uncle discover that they have bitten off more than they can chew, but it might work. Dont dismiss any possibilities out of hand.
Thank you so much canary for your thoughts on the matter.
I have updated their GP on the matters and am awaiting a call back today to discuss.
I agree that if I walk away they will probably both end up in a care home, which neither they or I want.
I note your advice on dementia and how the disease will take all you have to give and agree it is a cruel truth.
My mother does not have dementia but has full capacity, though physically has a LOT of challenges after a life changing serious accident.
I have broken off all communication with my aunt and uncle as I can only see them being obstructive to me and blocking any solutions I try to reach for the greater good - this makes things difficult to oversee!
I fear I am starting to sound paranoid but I have the aunt and uncle and also two step-brothers in the mix!
You see Canary my biggest problem is not the promises I made to mum and dad well before Mum was awarded a considerable sum of compensation. My biggest problem is the large pot of money, which the sons believe is their inheritance. They see me as competition for that money...…. how horribly this reads but it is the sad truth.
The sons fought tooth and nail to persuade my mother not to go to live near/with me as they think I'm in it for the money!
I'm not. For the years after the accident before there was any legal claim at all I changed my work life to be able to help them...… there was no surety that any money would be awarded. I don't want the money - it has never been the motivating factor in my life.
Once the big pot of money was there the sons visited weekly/twice weekly and kept on at my mother till she relented and killed the plan for a house. She then signed over their current home to the boys (it is her house) and I'm not even privy to what will happen if she predeceases my Dad as I'm not sure if he will be left homeless as he constantly tells me that Mum has told him the boys are to have the house on her death.
I live in a small one bedroom cottage and would not be able to house my dad, even if I wanted so I'm left constantly worrying about the future and how I'm to look after dad if he is left with nothing.
My mother's compensation money has all been put into a trust fund and although there is a will leaving dad provided for, the will only covers the money in their current account as all other assets have been put into the trust. The trust money will be disposed of as per a letter of wishes which I presume my mother has made but she will not divulge where my dad is left.
My God...….. I feel as if once I have started to talk it is all spewing out and is so distasteful and Machiavellian.

I think I better stop now!

Thanks for your advice/support it means so much just to talk
Esther xx
 

Esther Endotether

Registered User
Mar 4, 2019
11
What you most certainly do NOT want is "emergency respite". I alas experienced just that and was 24hr care living with my late mother at the time. You hold POA which is important. One always focusses on "best interests" even when there appears to be conflicting emotions. This is never a game as you well know and there comes a time when "continuity of care" becomes both essential and positive. Siblings, relations, close friends can innocently offer advice and gut reactions - but dementia requires scrutiny and non-stop care. The Care Home can resolve much angst, albeit not a panacea. It seems quite clear that you have stepped beyond the call of duty in as much as you are becoming frustrated and probably exhausted by various external factors. Here on TP you will find a whole world of situations like your own. Many can be genuinely tragic. Only you can gauge your own situation and only you as "carer" should guage " best interests " which often benefits from professional assessment to enable a truly positive outcome. Dementia knows nothing whatsoever about sentiment or emotions - that is a luxury for those who fortunately are living free of this uncompromising disease.
Hello Hazara8
Thank you so much for your advice, I really appreciate it.
I feel exhausted by trying to reply to everyone who has been so kind. Please see my reply to canary on TP as this really explains everything - it's not sentiment or emotions from other family members...………. it's just about the great big pot of money!
Many who are struggling financially might think I am a spoiled bitch as we have resources to care for mum and dad privately but never underestimate the poison money brings to the chalice!
Thank you so much and forgive me for the brevity of my response - I have exhausted myself pouring it all out to canary!
Thank you, thank you, thank you,
Esther xx
 

canary

Registered User
Feb 25, 2014
11,617
South coast
Mum was awarded a considerable sum of compensation. My biggest problem is the large pot of money, which the sons believe is their inheritance.
Im sorry to say that this seems to be a common view. So many relatives suddenly come out of the woodwork once they think that "their" inheritance will be used up in care fees.

Nevertheless, it is time to think about the long-term. It really does sound like your dad needs a care home, or alternatively (if they have the money), a live - in carer. This is what your mums compensation is actually for.
 

Esther Endotether

Registered User
Mar 4, 2019
11
Well you can't continue with things as they are.

Whatever 'promises' you made to your dad or mum, this was done at a time when no one knew what their needs would be. You may think keeping them at home is the right thing to do, but is it? There comes a time when their needs are far more important than their wants and you need to keep them safe. I don't see how you can do this if they remain at home.

Ignore the interfering aunt and uncle - you have LPA so they can't do anything without your say so. I do think resigning from your care position and stepping back is the right thing. Meanwhile, organise a care needs assessment for them both and please, start checking out care homes. You could always move them to a home near you so you could more easily keep an eye on things when you visit.

Unfortunately your mum and dad are only going to deteriorate - the time for independent living has gone now - they need full time care with a team of professionals.
Hello Jaded n Faded
Thank you so much for taking the time to read and reply to my post - it means so much.
I totally agree that their needs are more inmportant than their wants and I want to keep them safe and do all I can to make sure the rest of their lives are happy and they are well cared for and loved - that's all I'm trying to do.
However, my mother has capacity and makes all the decisions, even though I have POA. She has all the money and so all the power.
I feel defeated, tired and worn down and can't even think to tell you the whole horrible truth as I've just written it down in replying to canary on TP. Please can you read my post there as cannot write it all again : (
Thank you from the bottom of my heart for caring enough to reply to me - it means a lot
Esther xx
 

Esther Endotether

Registered User
Mar 4, 2019
11
Im sorry to say that this seems to be a common view. So many relatives suddenly come out of the woodwork once they think that "their" inheritance will be used up in care fees.

Nevertheless, it is time to think about the long-term. It really does sound like your dad needs a care home, or alternatively (if they have the money), a live - in carer. This is what your mums compensation is actually for.
Thank you canary
I totally agree and am waiting for their GP to call me today to discuss matters - not sure where that will lead us.
I have given up trying to tell Mum that the compensation money is for her/their care and welfare and not for leaving to others but it falls on deaf ears and she is obsessed with keeping as much money as possible to leave to the boys!
Mum has capacity and full control so any recommendations I make are only that!
I'll struggle on x
 

Hazara8

Registered User
Apr 6, 2015
416
Hello Hazara8
Thank you so much for your advice, I really appreciate it.
I feel exhausted by trying to reply to everyone who has been so kind. Please see my reply to canary on TP as this really explains everything - it's not sentiment or emotions from other family members...………. it's just about the great big pot of money!
Many who are struggling financially might think I am a spoiled bitch as we have resources to care for mum and dad privately but never underestimate the poison money brings to the chalice!
Thank you so much and forgive me for the brevity of my response - I have exhausted myself pouring it all out to canary!
Thank you, thank you, thank you,
Esther xx
Understand entirely, Esther and warmest wishes.