Caring duties

[hvml]

Having read some of the other deeply moving threads about the progression of dementia, I wonder if I am going about things the wrong way? As Dad's primary carer, my SIL has always insisted that the role means everything - caring, cleaning the whole house, cooking, ironing, gardening, laundry......I have been doing it all for 3 and a half years and to be honest, it's leaving me little time for Dad and also, I'm getting burnt out. It's been arranged that I will give up the role in April next year to return to life with my partner and go back to work. It's going to be so hard to leave and I'd like the remaining time here with Dad to be as positive as possible for both of us. What do people think would be the best way of achieving this?

Heid

 

[sleepless]

Having read some of the other deeply moving threads about the progression of dementia, I wonder if I am going about things the wrong way? As Dad's primary carer, my SIL has always insisted that the role means everything - caring, cleaning the whole house, cooking, ironing, gardening, laundry......I have been doing it all for 3 and a half years and to be honest, it's leaving me little time for Dad and also, I'm getting burnt out. It's been arranged that I will give up the role in April next year to return to life with my partner and go back to work. It's going to be so hard to leave and I'd like the remaining time here with Dad to be as positive as possible for both of us. What do people think would be the best way of achieving this?

Heid

If you don't mind me saying so, you are caring for everyone else there too! Does anyone else help with chores and garden?
I would imagine your dad does get some benefit from just having you around, no doubt you are company for him as you go about your jobs, but you need time away from the chores as well. You know him best -- could you take him out for a drive and visit a nice cafe perhaps, or sit indoors and watch a film with him. Sort through old photos?
I read on a previous post that you do get some time to go to visit your partner, but I hope you also have some other free time for yourself?
Best wishes.

 

[Selinacroft]

Having read some of the other deeply moving threads about the progression of dementia, I wonder if I am going about things the wrong way? As Dad's primary carer, my SIL has always insisted that the role means everything - caring, cleaning the whole house, cooking, ironing, gardening, laundry......I have been doing it all for 3 and a half years and to be honest, it's leaving me little time for Dad and also, I'm getting burnt out. It's been arranged that I will give up the role in April next year to return to life with my partner and go back to work. It's going to be so hard to leave and I'd like the remaining time here with Dad to be as positive as possible for both of us. What do people think would be the best way of achieving this?

Heid

Hi Heid

It certainly sounds las though your SIL is getting a good deal while she pursues her career. What plans do you have for Dad once you return home next April?
Do you get any financial support from either Dad or brother/SIL for the care you provide? I know it is not always straight forward or easy to discuss. I claim CA and also get Dad's AA plus I work a little so I get by.

Have you asked for a Carers Assessment to see if you can get any respite or help towards me time as a carer. Local Authorites offer different levels of support but here we get pampering vouchers or a chance to hire a beach hut. Councils might also provide a sitting service for so many hours at a much lower rate than agencies.
It sounds like you need some care support to do the donkey work of care while you enjoy some quality time with Dad.
I've just started another thread on quality time as I am feeling similar things- never having time to just chill -I'm either working, making meals, clearing up, sorting things for dad, chasing and organising carers for dad etc etc.
and is any of it appreciated-nope not by Dad and not by family. If it weren't for the likes of you and me , rest of family would be coughing up £800 to £1400 per WEEK for care homes.

 

[hvml]

Hi sleepless and selinacroft. My brother does the evening washing up and my SIL directs gardening activities at the weekend.She also often cooks on Sunday and we take it in turns to do the ironing once a week. The rest is down to me. The only time I get to myself is after Dad has gone to bed. Oh - and we have a neighbour who comes to sit with him once a week while I go for a walk. I think a new carer's assessment would be a good idea I had one some time ago, but Dad didn't have incontinence problems then and was happy to sleep in until 8.00am. Now, I have to be up at 6.00am 7 days a week to get him up at 6.30. It's getting tiring to be on the go until 7.30pm.

When I go back to London in April, the idea was that my brother would give up work and take on the caring role. This will depend on whether the fistula can be successfully treated, as my brother can't deal with the messy side of things. On the day that I go to London, I get an early bus and have to leave the house at 6.00am. The last 2 times, he has insisted that I get Dad cleaned up and ready before I leave. It's been nice to have breakfast as usual before I go away, but still....

 

[Shedrech]

Hi hvml - I wondered on your other thread who cooked the meals - and really I was asking "Do you do everything for everyone in the household?" - and effectively , you do. Amazing.
Is the house your father's?
If so, it seems to me that your brother and his wife have had one cushy deal for the past 3 years - in the name of your 'role' as primary carer. I hope that they are, at least paying their way. And maybe even paying you as the one who gave up her job - clearly s-I-l has no intention of doing so (I am NOT suggesting she should either) - and I do wonder how serious your brother is, especially if he won't do the messy stuff once in a while to give you a break. Is this all just a coded way for him to be able to put your father into a home because he won't be able to cope? Apologies if I am being cynical - but he can't even eat at the same table as your father without causing a fuss over table manners and that doesn't bode well.
And your partner is an angel! Lucky you. The sooner you are back together the better - April is a LONG way off (why then? not sooner?)
So - until then
yes a carer's assessment but also a re-assessment of your father's needs. I am assuming he would self-fund any care - if so, please look immediately into getting regular carer visits ASAP. Someone to deal with his morning routine would free up your time and let you and your brother see if home care visits are viable when you leave. Maybe a bedtime visit too - with some day care and overnight respite.
I assume your father is OK with the new arrangements being made.
With care visits in place you can have some time to recharge your batteries and be fresher for your time with your father. If you can't drive yourself, is your father able to go out in a wheelchair so that you could use a taxi which specifically takes a wheelchair and have a few outings together. Maybe have some movie afternoons and get popcorn and watch a favourite dvd?
I'm sorry, I can't resist this any longer - if your s-I-l thinks the carer role means that you do everything you list, PLEASE be aware that you are caring for YOUR FATHER so any chores are related to HIM ie his washing and ironing (personally I don't iron at all), cleaning only rooms he uses, making only meals he eats etc - how can 2 ADULTS live in a shared house and not do her and his FAIR share of the chores?! You may not be in paid work but you are worth your weight in diamonds!!!!
Sorry - I know what you do you do for your father, he's a lucky man. But you are an individual in your own right and should be appreciated!

 

[hvml]

Thanks so much Shedrech. I wondered if I was being a bit self obsessed.

It is Dad's house, yes. My brother and SIL pay the council tax and everything else is split 4ways. I'm getting CA and I get Dad's AA. If I got carers visits put in place, would I have to pay for them out of the AA? With the bills and helping my partner to maintain the flat, it sounds fickle but I wouldn't be left with much. It would be great to get a bit better quality sleep though and provide more consistent care for Dad without feeling frazzled all the time.

 

[hvml]

You are right about my partner. He really is a star and has been so supportive. I was originally planning to go back in November, but my brother asked me if I could stay on until April to give him a chance to wind down his taxi firm. I discussed it with my partner and we decided that as long as I could have a week's respite once every 3 months, we would manage. This was the plan before Dad got bad with the fistula. If the situation does continue as it is, it does look like my brother will put Dad in a home. He looks after him for 1 day a month - I doesn't have a clue about the longer term issues around full time care and how much it will take for both him and Dad to get used to each other. Every day has been a learning curve for me and I'm only now beginning to feel more confident! In another thread, Bod comments that it's a lonely job and it certainly is.

 

[Slugsta]

my SIL has always insisted that the role means everything - caring, cleaning the whole house, cooking, ironing, gardening, laundry?

Heid

I thought slavery had been outlawed long ago?!

Joking aside (although I don't see much to laugh about) you are not superwoman, you cannot do everything and nor should you be expected to do so. Get whatever help you can, either from family or pay someone, so that you can actually spend a bit of quality time with your dad (or get some 'me time', or see a bit more of your OH...)

 

[Shedrech]

The CA is yours as main carer - but not after April. The AA is for your father to fund his care needs - which you are providing for at the moment. Certainly your father will pay for his home care etc. from his income (pension?). Have you contacted the LA for a reduction in Council tax?

So, you do everything and pay your share of bills.
If your brother were in his own home he'd pay a mortgage or rent - and council tax. They are making quite some saving. Has he always lived with your father? And if your father goes into a care home AFTER you leave?

Has your father set up LPAs? If not you need to get these in place - I wonder if being sole attorney would be part of your caring role?

Am I wrong to imagine your brother and s-I-l have their own agenda? Apologies if this is being unfair. But they are living in your father's home and seem to be taking advantage of you and him.

So get as much care in place as soon as you can to give yourself a break.

ALL is only my opinion and can be totally ignored.

 

[hvml]

I'll get in touch with my dementia support worker today. Something has got to give.

My brother and SIL moved in to Dad's shortly after I did as I said I didn't feel I could do it on my own.
Prior to that they were in rented accommodation. Regarding LPA, my brother has that and deals with all the financial side of things.
If Dad does go into care, they will go back into renting. It has crossed my mind that they are doing well out of the arrangement, I must admit.

 

[Selinacroft]

Thanks so much Shedrech. I wondered if I was being a bit self obsessed.

It is Dad's house, yes. My brother and SIL pay the council tax and everything else is split 4ways. I'm getting CA and I get Dad's AA. If I got carers visits put in place, would I have to pay for them out of the AA? With the bills and helping my partner to maintain the flat, it sounds fickle but I wouldn't be left with much. It would be great to get a bit better quality sleep though and provide more consistent care for Dad without feeling frazzled all the time.

Hi hvml
Our situations do sound similar. I get Dad's AA but I pay for Dad's morning carer which is all he has now from Dad's bank account and keep the AA as my earnings so to speak for the rest of the care provided or I could not manage even though working part time.

If you don't hold POA , make sure you get third party access to dad's bank accounts so you can pay his care bills from his own money. You certainly shouldn't be using your own. LIke me , I expect once anything happens to Dad things will be divied out equally regardless of your 3 years of earnings sacrifice so don't cur yourself short by feeling guilty.
I suggest you perhaps keep a record of time and duties you have carried out and expenses paid out for dad and what they are for just in case of future arguments and hopefully this evidence will never be needed in battle!

 

[lizzybean]

If Dad (not you) can afford get a cleaner in, you are there to care for Dad not to be a skivvy.

 

[hvml]

These are good points and I will have them to put forward when we have the discussion about who will pay for the extra care. Half the problem is that my SIL is very assertive and always has points that catch me on the hop. When I have thought about it on my own, it's not seemed fair at all, but having had no one to talk it through with, I have just seethed to myself and given in. Oh TP people.......if wishes were horses and ifs and ands were pots and pans....I'd love to have found your wise words nearer to the beginning of this process.....still...I have 6 months to make the most of my time with Dad. It's made a big difference already Xx

 

[Shedrech]

Hi hvml - glad what we have been posting is helpful - I worried that I had been a bit too opinionated but I am truly saddened by your situation. I know what it is to be put upon and your efforts not acknowledged and to have family take advantage.

There is no question of who pays for your dad's care: it's your dad.
I assume he has assets = the house, private and state pensions.

By the way, an attorney is obliged to act in your dad's best interest. AND an attorney and his family may not benefit themselves from acting as attorney - your dad's money is his and only to be used for him.

They moved in 3 years ago with no rent to pay and only half the bills, plus council tax. On the understanding that you would not be able to care for your dad on your own. In my eyes, they have not held up their side of the bargain - the amount of 'care' they have provided is negligible and indeed your brother has refused to give some care.

So that is the past. Now:-

I suggest you write out all you want to make clear to your brother and his wife - nothing emotional, just a list of bullet points of things to raise and how you think each could be dealt with. Then hand it to HIM. Actually, this is all between your father, you and your brother. Can you also ask to have sight of your father's finances (maybe you already have), just so that you and your brother can assess together what effect the costs of care will have on his monthly income. I wonder if your partner could just happen to visit on the day you have this meeting?

I am wondering what part your brother's wife will play in your father's care when you are gone. And, if your father goes into a care home, they will go back to rented accommodation???? I take it then that you are all agreed that your father's house is to be sold. IF they suggest staying in the house, they are required to pay all the bills and pay rent at the market rate. And this is only if the care bills can be paid fully from your dad's income which would include the monthly rent.

I don't envy you this awkward situation and admire you for having cared for your father so long and for having realised that it is time to claim back your own life.

 

[hvml]

Hi Shedrech. I think a list of bullet points would be a good way to approach things. My brother always does any discussions through his partner - they are not actually married, my SIL has been misleading, but that is how I refer to her and I just carried on - as he is quite taciturn and quiet, whereas she is chatty and assertive. I'll give it to him, but I'm still sure that he will say that the care costs must come out of the AA. As things stand, when I go for my week's respite, they insist that I contribute a week 's worth of the AA towards the respite care bill. My brother is very guarded with his responsibility as POA and spends as little of it as possible, to the point where I could not even persuade him to pay for day care so that I could do some volunteering for my CV
Re the house, my "SIL" always says that any savings Dad has will be used up before the house has to be sold. I think they will stay there until that time comes. When all is said and done, I hate to say it, but I know that Dad has willed the house to my brother, so that is probably in their minds too. You are right. It's a truly horrible situation to be in.

 

[hvml]

Just rethinking my reply. I should have summed up by saying, the reason I have stayed in the situation is of course, to give my Dad as good a quality of life as I'm able to. My brother has been very impatient with him - although he has improved in recent times - and my"SIL" thinks he's self centered and selfish, although she is less snappy nowadays too. In a lot of ways, I'd prefer that Dad go into care when I leave.......

 

[Shedrech]

Oh hvml I so feel for you - of course you have stayed and put up with this for your father - and power to you for that
but it doesn't pay the bills does it and it has all put your life on pause
while brother and partner get on with theirs and appear to be looking forward to a rosy future
I think I keep replying because I found myself in a similar situation in many ways and working hard to find a way through it - we do what we have to, to keep a clear conscience and for our dads' welfare!
It explains why your brother is behaving as though the house is already his and is so careful over your dad's finances. You don't have to say but what is your inheritance to be? Is there a reason you were not jointly named on the LPA? I am not suggesting you are remotely bothered about what you will get on your father's death (you are much too busy making sure his life is a rich as it can be) - but there seems to be an imbalance somewhere, and not in your favour.
The AA is to finance your dad's care and to that extent it's difficult to argue against him in using it to pay for care visits etc BUT other replies have mentioned 'skivvy' and 'slavery' and if your contribution to your father's care is not acknowledged in any way by your brother then you have effectively been enslaved ( and truly stuck at home if you do not drive). Maybe it wouldn't rankle so much (with me) if care and household duties were being split evenly, but they are not.
What your household really needs is a cleaner, gardener, personal care visits, respite and day care - you are instead fulfilling all those roles - and even with all of that YOU would still be supplying the 5 hours a day caring to qualify for your carer's allowance but could leave the house to do some volunteer work or a part-time job and certainly for some much deserved 'me time'.
Seriously - why are you waiting until April to go back to your partner?
You've said that you'd prefer your dad to go into a care home when you leave, why not sooner - would he be OK with this? Or even if he is no longer really able to make that call himself, would you be content to have him in a home sooner? If so, really carefully consider telling your brother that you need to go to your home NOW, that you cannot go on and that 3 years away from home and partner is too long.
I am being the naughty imp whispering into your ear - you can tune me out.
I am also a hypocrite as in my own situation I have had to compromise - but halfway is better than nowhere near and I am. like you, working to move things even further.
Very best wishes!

 

[hvml]

I'm so glad that you have replied to me Shedrech. It's been such a relief to discuss a subject that is too sensitive to bring up with anyone in my immediate circle, including support workers. You have given me some very constructive and objective advice. I think that I will end up staying till April as I agreed. I'm looking forward to a weekend off next weekend, then a week in November.....the time will soon go and......it's been so rewarding to be with my Dad.I left home young and was not close enough to visit often, so....it's been a bit of a gift. Even though I have got the negative points off my chest, there have been positive things for me. My. "SIL" helped and encouraged me to lose weight - 4 1/2 stone - I have recently given up smoking, have got my confidence back after a bad bipolar break down a few years ago, have learned valuable skills in caring and hope to make it my ongoing career option.....I had a lot of pent up issues to get out, and will definitely make improvements to the situation. My partner and I are closer than ever due to the hard times and will be over the moon when we are back together. He puts an equal importance on family and every time I come back to Dad's, I come with presents from my partner. I have been in touch with my support worker re carers to get Dad up in the morning, so that I can enjoy the day from breakfast onwards. Re my inheritance, I heard from a relative that I have a trust fund. As you say, it's irrelevant to the current situation, but does have a bearing on my life. Que sera sera. Xx

 

[hvml]

I have also been told by relations that my Mum would have been proud of me. We lost her 10 years ago and I can feel that she is happy . Xx

 

[Shedrech]

Lovely, lovely post hmvl!
So very pleased that there is a truly positive side to your story.
I wholeheartedly agree that it is gift to have such time together as father and daughter - I have memories I will treasure all my life and don't regret a minute of it.
So glad you and your partner are such a team - you lucky pair.
The support worker is clearly listening, so changes are afoot.
And if you are happy with how things are between now and april, then your father will continue to benefit from your care and after april the caring profession will also benefit. Win : win.
PS Lost my mum nearly 10 years ago too. Proud?! Wherever she is, your mum is fit to burst and shower you with stars!