Struggling newbie

[Helen_17011]

Hi,I'm a bit at the end of my tether so I hope you don't mind me letting of steam!
I have been looking after my 96 year old grandmother for the past 8 years and prior to that I looked after my father in law for approximately the same amount of time, in an annex in the garden.Caring for both of them was a roller coaster, but on the whole the good out weighed the bad, which at times could be horrendous. Putting my father in law into a home was one of the hardest decisions we ever made, but in the end he needed 2/3 people to lift/move him so we had no choice. He did not take it well and died less than 2 months later, on the first day we couldn't visit him, consequently the thought of putting my gran into a home fills me with dread.
My mum and dad take minimal responsibility for gran ( at most a couple of hours a week) and spend most of their retirement holidaying and my sister is a nurse with 2 kids, who has a lot to say about grans care and welfare but in reality also only comes once a week for 3 hours when it suits her.
Gran has been really ill on and off on a regular basis, but the past year it has escalated to the extent that she is not strong enough to live in the annex, so I have moved her into our family home. Initially I coped really well, but it sounds crazy now she is getting better it is so much harder. In the past week she has had 2 falls in the night, has trashed her room, tipped her commode up trying to sort herself out (she won't ring her buzzer) and she has started getting annoyed if I'm late with cups of tea or meals, or have visitors. Now her strength is coming back she's walking more but half the time won't use her zimmer ( we have flagstones, so potential disaster)... it is like having a naughty toddler again and I am exhausted and it's less than a month. I have 2 teenagers doing exams and a husband who is depressed because our business is on the verge of going under. I can't afford to lose the plot but I am really really struggling...sorry for the vent

[jenny lucas]

Helen in brief for now (sorry, just about to go out!)/../....OK, here it is. In my considered opinion it is time for your grandmother to be in residential care.

I understand you are spooked by what happened to your FIL, but, you don't mention what age he was when he died - however your gran is 96, and quite frankly, enough is enough! I know that sounds 'harsh' but right now SHE is NOT the priority in your life. Your children are, and your husband, and you.

Your gran has 'had' her life. I know that sounds harsh, but if we make it that old ourselves, we have to have both the grace and the honesty to accept that for ourselves. Would you put your own children through what you are going through?

Make it your new year resolution to start looking for care homes nearby, so you can visit easily. You will find, I think, that once the 'burden of care' is lifted from you, and on to the team of care home staff, that the time you spend with your gran is much nicer and more enjoyable!

All the best, but enough is enough. TIme to focus on your children and husband.

[jenny lucas]

PS - the fact that your children are taking important life-changing exams (ie, that will determine their future), AND that your husband faces losing his business, gives you the ideal 'excuse' for telling Gran -'TIme for residential care'. Remember, she is a GUEST in your house, there by YOUR FAVOUR, and she's had EIGHT YEARS of your life.

(PS - does she have dementia - you mention she trashed her room!)

[bowlingbun]

Ring Social Services, explain the situation and ask for emergency care for her, and then tell your parents. You must now set clear priorities, children and husband first. You have done your stint of caring, and are being used and abused by the rest of the family, who have taken the attitude that whilst you care, they don't have to.
Nan now counts as elderly mentally infirm, and will, sadly, just get worse mentally until she passes away. Her needs are already beyond the scope of one person.

[jenny lucas]

Hi again (I'm back in)

What' s the financial set up with your gran? For a start, if she's been living in your garden annexe for eight years, how has that been paid for? Has she paid formal rent, or informal - has she paid any rent at all?!!!! And what about her 'keep'? Again, she should have been paying for this - you should NOT be 'out of pocket' in the slightest. Just the opposite, she should have been financially recompensing you for the time you spent on her.

And now that she is in your own house, the same holds true.

I don't say this to be 'petty' but to point out how MUCH you are doing for her - and have done, for 8 years....while the rest of your family seem to have done 'sod all'.....

When (not if, WHEN!) your gran goes into residential care, will she be self-funding (ie, if she has assets/savings over the £23k limit), or will the local authority be paying for her (ie, if she's under that limit, though I believe there is a 'taper' down to something like £16 where there is some cross over self-funding?? The Experts at Carers UK know all this in detail!).

Self funding gives gran more flexibility as to where she goes, as not all care homes accept non-self-funding people. You need to ask when you phone them. (Just googling 'Care homes' in your area will put up a list, and you can start from there - the council also has a list too)

The rules on respite care fundings are, I believe, 'malleable' so, again, other members here, plus of course the team of experts will know. Then there is the issue of NHS funding (Continuing Health Care) that can be applied to some aspects of care (eg, my 92 y/o MIL gets CHC funding for the 'nursing' element of her care, but pays for the rest of it herself.)

What is the state of mind for your gran - does she have control of her own finances still, and is there any Power of Attorney set up?

I know this all sounds quite a lot of hard work, at a time when you are almost at cracking ,but if you put in the extra effort now, and get Gran in to respite (her 'consent' is not necessary by the way - like I say, she's a guest in your home and there is NO 'legal obligation' on your part to look after her, or indeed, anyone else other than your children while they are minors!), then when she is out of your house - starting with respite from which, of course, she simply does not come back - you will get your sanity back, and be able to focus on what is probably the number one priority now, supporting your husband as he protects and saves his business. Then it will on to focussing on your teens for their school exams.

See my next post as well for 'ideas re Gran'

[jenny lucas]

Hi again, just to say that if you feel moving Gran out 'totally' is a bit 'drastic' then you might consider what I did initially with my MIL when she first went into residential care. I would have her back to me for two nights in the week for 'sleepovers' so that she got a 'bit' of 'home life' but the rest of the time I could get on with my own life.

As her dementia deepened, that became impossible, but it worked well for about a year.

Ps - 'naughty toddler' is exactly what they can become - they utterly lose any ability to think how they are impacting others, take us for granted completely, and become 'possessive' and 'self-focussed'. It's exasperating, but we have to remember they don't 'mean' it - it's just as they become so old, especially when/if dementia kicks in.

[Helen_17011]

Thank you for your kind advice. Gran doesn't have dementia, in fact, when well is as bright as a button, but is very determined. She didn't intentionally trash her room just caused chaos trying to sort herself out rather than ring her buzzer and be a bother.Reading this back I feel really guilty now for moaning about her!
Trying to be more assertive I thought I would speak to my sister about helping out a bit more....big mistake, we ended up having an argument and she walloped me. I feel absolutely devastated, I am a 49 year old woman who has not been in a skirmish for 40+ years (My sister is not normally like this, but she has been having a tough time recently). It's an all round disaster as she says she never wants to see or speak to me again, so I am not sure where that leaves gran.

[Helen_17011]

Thank you Jenny just read your suggestions and and I will try to answer some of your questions:
Gran has paid monthly rent for the time she has spent with me, mum forwards some sort of weekly allowance (about £30 I think) It by no means covers everything I do, but I love my gran very much.
When I moved her into our house and her needs escalated, a concerned friend suggested that she should be paying a higher amount, but deciding on how much is so difficult. Given our precarious financial situation, any extra £ would be of great help.
Gran has an estate over £30k, which my mother has invested. I have booked an appointment to speak to someone tommorrow about attendance allowence and carers allowence. I have no idea what she gets and as I do not have power of attorney can not find out until mum returns from holiday.

[bowlingbun]

It leaves you as sole carer. From now on, your sister doesn't exist - does she realise that she is guilty of assault. Ring Social Services, and ask for an URGENT assessment as you cannot care for nan on your own, you need, help, now. The reasons behind her trashing the room are secondary, the fact is, she trashed the room. Gran should be giving you ALL her pension apart from £20-£30 pocket money. If she has an estate of over £30, then mum should be using this money to pay you for nan's care. Your mum should not have invested it in such a way that it is not available. Mum is failing in her duty as attorney, that's really serious. Is she using nan's money to pay for things for herself? Can I ask where nan lived before she moved in with you. Her own house, or rented?

[jenny lucas]

Very glad to hear Gran didn't deliberately trash her room!!!! But of course, you still had to deal with the results (sigh.)

It's good she doesn't have dementia, but a 'determined' elderly woman can have a lot of willpower - especially since, from their point of view, their 'will' is sometimes all they have left to 'wield power' with.

Have you discussed her living arrangemetns for the future at all, eg, when she couldn't cope with the annexe any more? Has the idea of residential care even been mentioned?

Like all of us, I'm sure she'd far prefer to 'see out her time' 'at home' with her family - which is all very well if if if that isn't causing a problem to her family. But it is, isn't it? You are the only one who 'bothers' with her in any sense at all, it seems, so it ALL lands on you.

Home caring is really only possible when it's shared over several relatives (a friend of mine used to 'timesplit' her elderly father between herself and her sister - the latter has now pulled out, and all she wants is the money from her dad....not the bother of having him to stay....so sadly, you are not the only one with 'waste of space' relatives./)

That said, what do you your parents and sister think should happen to gran? Do they say 'Just put in her in a Care Home?' or do they think it's fair for you to have to look after her yourself?

In that ghastly row with your sister, what did she say? I can well understand her 'lashing out' (not physically, obviously -but it shows how close to the edge she is - not surprising I guess if she's a nurse, given all the chaos and stress in the NHS now!), if she thinks Gran should simply be in a care home and that's that! (Different if she thinks YOU should go on looking after her on your own!)

Like I say, what does your husband think -and your teenage children? So many carers 'soldier on' way, way past the limit of their strength. Maybe they feel 'Look, I've coped so far, I'll see it out' ...but the end may not be for several years yet. I think my MIL will see her 100th - I'll be SEVENTY....the very thought of devoting a whole decade to her (she needed care from three years ago) made me want to scream my head off! There is only 'me' to look after her (I'm widowed, and her suriviving son is in the USA), so it was all 'down to me'. I cracked, catastrophically, and a counsellor friend of mine talked it through with me, and then went off to talk to my teenage son (just become a student), then came back to me and said ' He says Granny should be in a care home'....so I did. My son 'gave me permission' to 'give in' and accept I couldn't and wouldn't sacrifice the next TEN YEARS of my life nursing a very, very old lady, who had, as I said in my initial post, 'had her life'.

Helen, NONE of us make the decision for a Care Home 'lightly' - it's always always always a heart-searching and heart-wrenching decision, very often precipitated at a time of crisis (eg, the caree is taken into hospital, and then never comes home, but goes into a care home). We ALL are haunted by the Guilt Monster, that tries to tell us how Wicked and Heartless we are by 'dumping someone we love in a care home'....but the blunt truth is that your gran now needs more care than you can, and, indeed, to my mind, should give her. The time she takes, both in hours, and in stress, means that that time is not available to the rest of your family.

What if your husband's business does go under? What will happen to the family finances? What kind ofstress will that induce in him, in you, in your teenage children?

It looks to me like your entire family unit is being, sorry, 'sacrificed' to keep a very, very old lady, whom you have already dedicated eight years of your life to, living with you at home, dominating your life, and also, don't forget totally screwing up your relationship with your sister. (I'm sure she'll speak to you again when Gran is in a home - because then you won't 'nag' (!!!)' her to do more caring of her.....)

As for venting her, vent away! We all do - it's a 'safe space' because we understand what outsiders can't that 'caring is wearing'...even when you love the person you look after her. The stress levels can be utterly totally horrendous.

Wishing you ALL the best, but why not sit down tonight with your husband and Have The Conversation About What Shall We Do About Gran?

Kind regards, Jenny