Hi, Thank you for allowing me to join your group. My husband and myself care for his parents in our home, they have their own bedrooms, toilet, wet room etc. Mum in law has Alzheimers and has lived with us for 6 years, Dad in law is currently being assessed for Dementia but has Prostate cancer, has had Mini stroke 4 years ago which led to him also moving in with us.
I have left my job to be main carer and husband works 5 hours a day 5 days a week.
We dont sleep as have to watch Dad on security cameras, installed around downstairs of our home. He has become very unsteady and has had several falls (nothing too serious as yet) I could go on but dont want to look needy.
We just need somewhere we can ask questions and get support.
Thanks again,
Gill
Hi Gillian,
Welcome to the forum. You are what I call a “Heavy end” carer.
It’s not only our parents, but us that are getting older, so we have less energy as we are expected to do more!. It’s important to realise that YOU are the ones who should be in control. The only power they have over you is the power you let them have. If you decided that you didn’t want to do any caring ever again, no one can force you.
Forum members may be able to help with a few ideas, sharing their own experiences, but what is available to you and your parents depends to some extent on the answers to the following questions. Your answers will help us give the best ideas, rather than suggest things that many not be appropriate to your specific situation.
What is troubling you most? Finances, lack of sleep, lack of time with your husband?
What help are you getting from Social Services?
When did SS last do a Needs Assessment for each parent, and Carers Assessment for you? (Should be updated at least annually).
Do they have over £46,000 between them? (Yes/No)
Are they both claiming Attendance Allowance?
Do you have Power of Attorney?
How much do they pay you for the care (not housekeeping) you provide.
When did you last have a holiday?
Do you have any brothers or sisters?
To discover what your options are, the first step is to assess their finances. As BB is asking, without this information there are too many ‘ifs’ from us!
Caring for inlaws is NOT the same as caring for one’s own parents. I know this personally. I ‘inherited’ my MIL at 89 (her, not me!). My situation is ‘unusual’ in that she was widowed (long time), living robustly independently 400 miles away in Scotland in her own flat, running her own (modest but durable) finances, and seemingly ‘fine’. However, five years ago she phoned me to say she couldn’t face another Scottish winter. Understandable at her age! So I went into ‘immediate action’ with a view to moving her south to an ‘equivalent flat’ near me, in my suburban dormitory town in the Home Counties where I would ‘replicate’ what she had in Scotland, but with me being able to ‘pop in an out’.
I thought that would be ‘doable’. I’ve always got on well with her.
However, the ‘fly in the ointment’ was that in fact she was developing dementia, and it took me over six gruelling months of going up and down to Scotland, having her to stay, going to stay, snatching a bare fortnight ‘break’ every few weeks, with her increasingly reluctant to be ‘home alone’ etc etc, to realise she HAD to go into care of some kind.
That was because the ONLY alternative was her moving in with me and me spending the rest of her life with her enjoying what I came to call Hotel Jenny, where each and every day without exception was spent on HER.
I was the ONLY person she had - my husband is dead, her surviing son in the USA (What could he do, in practice, he too was divorced, so it was a ‘care home in the UK’ or a ‘care home in the USA’…).
BUT, what I can’t but emphasise is that because she was only my MIL, not my own mother, it was TOTALLY DIFFERENT from me ‘taking in’ my own mum. Had she been ‘my mum’ I would have tried much longer to keep her with me (I would have tried really hard NOT to ‘put her in a home’ while she still had any realisation of ‘where she was’). But what you can do willingly enough (or rather, be prepared to do!) for your OWN mum, you will find it MUCH harder for your spouse’s parents. However ‘good’ your relationship with them in the past, the point is that there are no ‘heartstrings’…that emotional tie that makes us want to cherish and ‘dote’ on our parents. (I was very ‘protective’ of my MIL, but again, I didn’t love her, so giving up my life for her as would have been necessary - as YOU are doing for YOUR in-laws - was just a completely different ‘demand’, and one I REFUSED to make).
So, I put it to you - in your ‘heart of hearts’, would you ‘prefer’ your inlaws NOT to be living in your house, taking over your life?
It’s fine to say no here, however ‘taboo’ the subject may be. However much ‘guilt’ you may feel in saying it (BOY did I feel guilty when I ‘put my MIL in a home’…)
Does your husband ‘expect’ you to look after his parents for him?
Do you BOTH ‘long’ for all this to be ‘over’ in some way (death??)(theirs not yours I hope!).
It’s all desperately desperately sad when the very old become the very frail, the very needy (YOU are not needy - THEY are!!!)
We’re not ‘hostile’ to the frail elderly here, but we DO understand, first hand, the appalling and often unsustainable toll it takes when another human being needs an ENTIRE ‘other person’ to dedicate their ENTIRE life to them, to keep them alive.
Wow so much info, thank you.
Ok BB, to answer your questions: Our main worry is failing his parents !! Yes lack of sleep is a big thing right now and us not able to leave the house together.
I think they have approx £47 k between them but i know Dad in law has shares too.
They both now get Attendance Allowance which was agreed they pay us as we buy everything they need (and dont need but would like)
We have POA for Mum in Law but not Dad yet, I know we need to set this up whilst he still is able to consent.
When you say pay us for care am not sure but as i said we receive their Attendance allowance aswell as the housekeeping money they pay us.
We actually had a week away last month, the first time away anywhere together for 6 years (since Mum in law moved in) We managed this by paying hubbys ex wife (we get along great by the way lol) to move in here for the week. It worked out well.
Hubby has a brother who is 11 years younger than him and has lived in Thailand for several years, he comes here for a week at christmas and thats it. He does nothing at all to help us even when home. He never sends birthday cards etc which i think is very sad but they both adore him and he is golden boy !!
Jenny, I know I do not love them as i do my mum but I actually do love them both alot. Hubby works just 5 hours a day but in no way is it all left to me all the time (quite a bit but not all the time)
Yes we both think of what our life will be like after they have passed and feel guilty thinking that. I am 57 and hubby is 60 and yes we struggle.
We had a social worker here once at the start with Mum in law but no contact since. No reviews, no help at all.
Hope this infor helps
Thanks again
__
When you say pay us for care am not sure but as i said we receive their Attendance allowance aswell as the housekeeping money they pay us.
AA paid to the carer ?
VERY topical issue to say the very least.
Out of interest , said monies declared to the TaxMan ?
If not , therein lies the potential problem.
Hi
The Attendance Allowance is paid to my in laws every month into their bank accounts. We can access that to pay for the things it is meant to be used for. Chiropodists, Hairdressing, it pays for all their clothes, trips out (diesel etc) i draw out the money as needed to cover birthdays too.
When i left my job to become full time carer to both of them I spoke to my local tax office and declared everything i was receiving. I get £62 a week cares allowance for mum in law as am unable to claim for dad in law too, so i have a limit to what
The AA pays for all the extras they need. Anything that is not used stays in their accounts. If I was to draw out all of their Attendance Allowance and use it for my own personal gain then yes that is a different matter, as i have no other income at all I am well within my tax bracket with my carers allowance and I have receipts for everything I buy and pay our for them both.
I was however unaware of the link you posted. I will be more aware and make a note of every little thing I spend their money on.
Thanks
Your welcome.
A problem for many when not exploring what’s actually available in the way of information on the forum … even stuff that most take for granted which , under closer examination , is not … that thread being a prime example.
Not a criticism … merely a fact … family / kinship carers tend to react … not act.
In 2018 , it pays to be alert … there are some really nasty things out there.
Interesting … how many out there do the same to avoid any potential problems down the line ?
Opening show … 1 in … 5,000 … purely AA and PIP / DLA … any takers ?
What is Pip ? I realise that we could possibly receive more help but we are lucky enough to be in a position not to ask.
I have to admit a Blue Badge would come in very handy for when we take them to hosp appointments, which there are alot.
Neither of them can walk without a stick and even then they need one of us to walk with them. We are so tired and then me having the stress of my mum almost 300 miles away with Breast Cancer and needing care it just takes its toll.
I think we just need to sleep lol.
PIP ?
Personal Independence Payment … gradually replacing DLA nationwide.
An Internet search will reveal all the details and reaction , mainly negative , across a whole host of sites … including the forums on the leading caree supporting organisations.
Been shrouded in controversy since first introduced in the Welfare Reform Act , 2012 , and started to be rolled out in April 2013.
Blue Badge ?
Full sp on the Government web site :
As soon as they get below the (approximate) £23,000 each limit, or £46,000 limit jointly, then Social Services will contribute towards their care. So it’s really false economy for you to subsidise them.
Do you realise that residential nursing care is over £1,000 each now?!
That Social Services care staff cost about £15-£20 per hour. Just think how much you are saving them, to your own detriment.
As well as housekeeping they should be giving you something for the care you provide. Dementia patients normally end up needing 24/7 nursing care,
Tell Golden Boy that if he expects to stay with you then you expect him to pay you for his keep.
Who paid the ex to care, you, or parents?!?!
When they die, what is in the will? You are providing all the care they need free of charge, so you should get any funds remaining, not Golden Boy! We call siblings like this “Helicopters” - GB is the perfect example.
"Our main worry is failing his parents !! "
“Hubby has a brother who is 11 years younger than him and has lived in Thailand for several years, he comes here for a week at christmas and thats it. He does nothing at all to help us even when home. He never sends birthday cards etc which i think is very sad but they both adore him and he is golden boy !!”
Both these statements of yours ring alarm bells!
First of all, I’m glad you have a good relationship with your inlaws, and that your hubby is not expecting you to ‘do everything’ etc.
But to my mind that isn’t actually the problem.
The problem is in the quotes above.
Gillian, why on EARTH are you even SAYING that you are worried about ‘failing’ his parents???!!
THEY HAVE LIVED WITH YOU FOR SIX YEARS IN VERY POOR HEALTH!
You clearly took in your MIL, leaving your FIL ‘free’ of her care, and now you are caring for HIM as well!
My dear girl, you are doing WONDERS for them! Don’t ever, ever, ever, think let alone fear that you are ‘failing’ them!
You and your husband could have said, six years ago, when your MIL needed full time care, ‘Go into a care home!’ And you could have said the same thing about your FIL four years ago…
But you didn’t - you took them in and gave up your lives to look after them…
Now, if they’d owned their own house (did they? You say they have about £47 in cash and a bit more in shares?), you might have decided ‘OK, hubby and me will do the care, and ‘save’ the house for our inheritance in exchange’ Many adult children do take that decision (it’s a risky one, but it depends how long the parents live, and how much care they need!).
But you and your husband had nothing to gain by taking them in - you have done an INCREDIBLY kind thing in doing so, so, like I say, do not for a single solitary moment say you fear you are failing them!!!
Whch brings me to my second ‘alarm bell’
Your brother-in-law.
Whenever I hear the term ‘golden child’ an alarm bell rings. To hear that he is blithely living thousands of miles away, turns up once a year to enjoy Xmas with you when he he does NOTHING for his parents either then or at any other time…is NOT ‘good news’ is it?
And then to hear that HE is the golden boy???
EXCUSE ME??? (If you can hear my outrage, good!)
So, what I fear is this - that there may well be a situation in which the ‘golden boy’ bums off to his carefree life in Thailand, applauded and adored by his doting parents, while your husband, the ‘UN-golden boy’ actually gets landed with all the work of looking after them…
What this boils down to is that I fear that it is your poor husband who is ‘trying to earn their love and approval’ by slogging his life out for their benefit, while, oh no, it’s his ‘golden boy brother’ who doesn’t lift a damn finger for the parents who ‘adore’ him who STILL gets all the praise!
You are your husband’s champion - you are there to fight HIS corner, not look after his parents for SIX YEARS in your OWN home!!!
Does any of the above ring true? If not, why not…
Is there any other explanation than the one I’ve given??? It would be great to hear it if there is!
(B ut even if golden boy’ were not in the frame, you should STILL not ‘fear failing’ your inlaws…) (Sorry, they have NO right to ‘eat your life’, or your husband’s life…sorry, but there it is. They don’t.)
On the psychology of ‘golden children’…they are very often the child who MOST resembles one of the parents! ie, they ‘see themselves’ in the golden child, hence all the adoration blah blah blah.
Do you think this applies? Who ‘adores’ him more, his mother or his father?
It can actually be a real curse to be a golden child - on the surface they are ‘spoilt brats’ (!) (though they can be lovely ‘sunny’ people - and why not?! After all, they’ve been ‘adored’ all their life and can ‘do no wrong’!).
But it’s a curse BECAUSE they’ve been ‘adored’ all their life. Often they have great pressure put on them to ‘fulfil the dreams’ of the parents…and sometimes crack beneath that strain, either grotesquely Underachieving, or simply running away (eg to Thailand?)
Or, of course, they end up truly truly ‘spoilt’ in that any chance they might have had to grow up into grounded, sensible, responsible adults is ruined from the outside by their parents doting mindlessly on them.
Far better to be the ‘UN-golden’ child…PROVIDING you don’t fall into the trap of trying desperately to earn or win the love that the golden child has …because you NEVER will (and who wants love from such flawed parents???) (ALL parents how have golden child are badly, badly flawed, and highly damaging to their children.)
Following on from Jenny’s post, who controls your household, you, or your parents. Do you sometimes feel like you HAVE to do something?
Counselling at the age of 60 made me realise that I was still in “little girl mode” as far as mum was concerned. A “good” daughter was always obedient, always did what mum said. That was me! Counselling taught me that as an adult, I could do whatever I liked. It was MY CHOICE, that the only power mum had over me was the power I let them have.
I didn’t HAVE TO do anything at all, no one could force me.
What I needed to do was stand up for myself, take control. OK, she might want me to do this, that, and the other, but if I didn’t what then? Mum desperately needed me, but I didn’t need mum (but still loved her). Changing my response to mum really, really helped. Once I felt in control, I felt better.
Maybe you and your husband would benefit from some support like this?
I think, too, it’s very very important for you and your husband to find time to sit down and talk about ‘the future’.
The trouble is, it sounds like you are constantly firefighting (VERY common for the ‘heavy end’ of caring!), and the fact that you are chronically sleep deprived the two of you indicates it (you’ve mentioned it several times, so it is clearly - and very understandably - one of THE biggest issues for you!)
However, it’s SO important to have the talk about ‘the future’.
Putting it bluntly, are you going to continue ‘as is’ until BOTH the inlaws die? When is that likely to be? Dementia patients can live even ten years on - the average lifespan post diagnosis I have read is eight years -
And what about your FIL’s cancer? What is his longevity in that respect (and the dementia). Prostate Cancer can be very variable - aggressive, it can kill. Non-aggressive, and the saying is you die WITH it, not OF it…
The question ‘how long?’ is absolutely vital. You are both in ‘old middle age’ now, with retirement looming. If your inlaws are still alive in five years time, ten years time, are you really thinking you will still be looking after them as you are now? (With YOU getting older and more infirm along the way of course!)
I know that you would like to ‘see them out’ - we would ALL like that! But it depends on the ‘how long’ question. Because otherwise you DO have to consider the ‘care home option’.
Whose life is more ‘important’ do you think? Yours or theirs? They have HAD their lives. You haven’t.
Think on it, please.
The REAL problem with elder care is not the care itself - it is the dreadful HOW LONG question. That is the ‘killer’…
I agree with Jenny.
I nearly died of a serious illness when I was just 52. I nearly died of a car accident 12 years ago, soon after I fund my husband dead in bed of a heart attack when he was just 58, while mum was still alive.
She died when she was 87. We had so many plans for the future that never happened.
Don’t let this happen to you.