To be not entirely keen to look after my Grandma

[StWinifred]

My Grandma is 100 years old and rather debilitated, although fully compos mentis.

She was being looked after her by her son, who had lived with her for decades. He had a heart attack in the 1980s and I think the strain of looking after his Mum did for him, and he suffered a fatal heart attack in July.

Since then my parents has been looking after her, in her home, which is a largely original 1930s house.

She went to stay with my parents in their own home (an hour or so away) for a few days a month or so ago. She found this a bit disorienting but they were grateful to get home; this was curtailed when she had to go back home for medical appointment.

A few weeks ago my parents wanted to go away so they asked if I could help, I said she can stay here (in our hours for a week), but there's no way I can go there because of various prearranged commitments locally, school, etc. They didn't think this was a good idea.

My sister proposes early on that she should stay in her home as she has been in the area since birth. My sister has been with her partner (she doesn't believe in marriage I think) for a decade and has no children (doesn't believe in this either). Her idea was that we (my parents, my sister, and I), should look after her a couple of days per week each.

Due to work/childcare I can only do this over the weekend. Last weekend I headed there at 6pm (takes about 1hr 45 to get there) on Saturday and got back home at 5:30pm on Monday to pick up the kids from school. My sister was there from 6pm Monday till 8am Wednesday, working from home Tuesday, and I think planning to on Wednesday also in future, though she had a meeting on Wednesday so left early - in future she might be there until afternoon/evening though.

My father said he thinks I shouldn't go every week on Saturday as it would be disruptive to our family. I haven't made any commitments.

Anyway he called on Tuesday to ask what time I was coming on Sunday, and I said I didn't know I will let you know at the end of the week. He called me today at 11:30pm to ask the same, sorry I don't know, does it make any difference? Well we were thinking of going away for a couple of days, he said. Oh really?

He then sent me a rather nagging email saying they would appreciate a routine, and also could you come round and stay with the kids during half term to balance your sister's 'input'? (My DH has work to go to, locally, so it would be me + kids.)

I replied saying sorry I can't give you a routine after only one visit there, it ain't routine yet, and I'm not about to promise to match my sister, what she does is what she can do, and she's got her circumstances and she mine, and actually I didn't really feel the house was suitable for kids when I was there.

Grandma can't make it up the stairs, so she sleeps in the living room, and there's no toilet down stairs, so there's a commode there. She's got severe incontinence so lots of pads to dispose of, plus the commode to empty. She tends to fall over and she can't be left alone at home for more than about 2 hours. She needs her breakfast, lunch, dinner prepared, plus tea, drinks, etc.

They've been in this house for nearly 3 months now and they have no bed, just two very old 'small single' mattresses on the floor. Apparently they ordered a bed from Homebase but it takes 3 weeks or something? Anyway, I thought this was ridiculous, so when I was there on Saturday I went to a local shop and they said they could deliver a bed on Wednesday. Passed this information on to my father and apparently he couldn't get through to them on the phone, so er, still no bed for me to sleep on this weekend.

There's another empty bedroom for the kids (but no bed) but the window frame is rotten and there's a hole in the window.

My DH doesn't like this arrangement at all, and thinks Grandma should go live with my parents, and that it's their responsibility to look after their mother.

My father OTOH seems to think that its our collective responsibility (the four of us being her only direct descendants), and on that basis I should tell him what I'm doing and when, and not only that but try and 'make up' days that I haven't done (when compared with my sister) because childcare in the week is not practical.

I have told him several times that my DH is not really happy about the situation/disruption to family life (e.g., last Monday and foreseeably all future Mondays was disrupted because I had to get up at 7am to give Grandma her breakfast, after she was up till 00:45 watching TV the night before, and then I had to cycle 12 miles to get to the station to get home, and was way too knackered to cook a meal for the family, or to work with my DS on his 11+ preparation), but rather than taking the attitude that 'you are helping out, thank you very much', it seems to be more a case of 'why aren't you doing more'.

I am not really sure if IABU to be resentful of this attitude.

My parents have never told me what they are doing in advance, they will just do it on the day, and I have followed their lead, so if they want to know for instance what we are doing in half-term, I will tell them the day before, because that's when I will know myself. If they want to go away or something, then give me the dates and I will try and help, but it seems like they just want to go and do some gardening at home, ok well you don't need two weeks notice for that do you, and actually perhaps you can get a bloody bed in before I come round again.

[Wowserz129]

I agree. You have young children to look after and they are your main priority! I think that others such as your parents and you sister who have less going on in their lives. I think you should try help when you can buy don't put pressures on your own family to please your parents.

[BiddyPop]

Well, if your uncle's room hasn't been touched, your mum (his sister) will have to face that he's gone and tackle it, if they are staying put. And if they want others to stay there regularly (it's probably better to have at least a second overnight room available to help out and also reduce things like washing sheets every time there's a changeover if it's so regular).

If there are smells lingering, Gran may need a straighter chair (that's more stable for her, has arms to use to push out of and support her, and has wipe-down or removable and washable cover) - which could be as well as the existing couch for others, or getting all chairs the same.

I can understand not being suitable for Stannah - 1 gran was for a few years but the other never was (well, refused, and then was too unstable).

If you need to replace the porch anyway, surely a builder could do that and ramp at the same time?

A downstairs bathroom does sound like it's needed. And in the meantime, maybe look for a nice washstand in antiques place, or even just decent table that you could put a decent bowl for washing on top, so that there is no bending etc, and she can reach things she'd need and hang a towel on a hook on the side. A sturdy IKEA table with a hook/rail added on the side and nice sticky plastic (maybe patterned, or matching room colour?) covering the top would do even, not needing to be expensive.

Another way to look at it might be to move gran upstairs again closer to the bathroom, but make another upstairs room into more of a sitting room and the downstairs room into a bedroom for a more able-bodied person. So gran can still have TV, nice seat, different room to move to etc but can go to loo and wash in bath/shower.

It might be that, while you can't give time in the house, you may be a person who can do more organising of things that need to be done. It sounds like you can see them more clearly, and may be more likely to get on with it. Or talk to different people about what's needed (with photos, dimensions etc)and whittle down to just 1 or 2 that need to go to the house and see it/your parents/gran to reduce disruption.

And while you may have lived there for a year (been there, done that), that doesn't mean you take over or have a duty to ignore the rest of your family. You presumably did some care when you were there (laundry, cooking, shopping, cleaning etc) in return for staying, and there are still ways to help now without being physically there.

I say that thinking about my Gran and what she wanted - not to be dependent on family, and also getting care that was available to her and delighted to see me coming whenever I could but giving out every time because I had so much to do too (not that I made her feel guilty about being there - she just knows the reality of life with kids and working).

Has your gran said what SHE wants at all?

[LookBehindYou]

Hmm, trying again. Yes, dc are a responsibility but family life and other responsibilities continue. The kids won't be damaged by not coming first for a while. It is unpleasant to use the kids as a get out clause and a huge amount of people have said that the sister should weigh in because she doesn't have kids (ie. less important life), which is just rude. I think emphasis should be on a nursing home for mum if the parents aren't willing to do what they need to do. But this won't happen overnight and so everyone needs to pitch in while it's being sorted. This is family life and good for the kids.

[StWinifred]

"The kids won't be damaged by not coming first for a while."

Well this is a bit of an issue, DS is (high-functioning) autistic and due to senior schools, etc., I am spending a lot of time with him working on various issues.

Not saying he is being damaged but at the moment in particular it is quite important that he comes first.

[Wowserz129]

Also agree with the point that sheltered housing complex or similar might be more appropriate as all this different people, no own space etc can't be good for her.

[expatinscotland]

Your son needs to come first here, St Winifred.

[LookBehindYou]

StW, I understand. Tricky. Call a family meeting with your gran their too. Give her lots of love and talk rationally about the best thing to keep her safe and happy. A great outcome would be sheltered accomodation that delivers meals and gives more hands on care that's close to your parents.
I strongly suggest you all talk together asap. You'll be around after your gran and so it would be best not to fall out over these highly emotive and stressful things if you don't need to.

[LookBehindYou]

Aaaaagggh predictive text - drives me nuts!

[MerylStrop]

LBY - I don't think the OP has said her sister SHOULD do the lion's share, just that having her own DC make it more difficult for her to do as much as her sister (that and living a 2 hour drive away and having a job).

[LookBehindYou]

Meryl, I didn't read the OP saying it but a lot of the comments did.

[StWinifred]

Expat, I am working with him after school Monday, Wednesday and Thursday till bed time (Tuesday and Friday he has activities), except Monday I didn't because I was exhausted after coming back from Grandma and couldn't face it.

I can't realistically say that me being away Sunday and Monday while he is at school is going to fuck up his life, but obviously it's not ideal, but then as my Dad has said the situation with Grandma is not ideal....

[rockinhippy]

Honestly Stwinifred the assisted housing complex IS the way forward, look at the link I posted, the left hand side allows you to search your or your DPs area to see whats available, I visited my DPs when they lived there, the place really was amazing, properly equipped bungalow for their needs AND a first class restaurant where they could eat & socialise if they chose - meals where included in the price, quality food too & if they didn't want to eat in the restaurant then food could be delivered, they had as much help as they WANTED, nothing was pushed on them, but staff made sure they felt involved if they wanted too - when my DPs are older, one dies then I already have the local Hannover complexes book marked for them

[EduCated]

Please speak to SS. We have just arranged for some care for my DGPs. Currently it is only cleaning and meals on wheels, but the 'cleaners' are actually from a care company, so that if we/my DGPs feel more care is needed, it can be picked up by them and will be with familiar faces. SS talked the family through the different options and how best to proceed, although it is a private arrangement with the care company.

You have to think as we'll about back-up plans. What if one of you ill? Who will pick up the extra care? What about when you want to go on holiday? When something happens with the DC? If you/DSis want to move house?

[BiddyPop]

Definitely a full and frank family conference is needed. It may need 2 sessions - (possibly both without Gran in the room) - the first to get your parents to understand exactly what Gran's needs are now and likely to become as time goes on. A second, after a few days to reflect on that reality, and to talk to Gran about her wishes, would be where the plan going forward could be agreed (options may be laid out at the first). That conference should also include SS and whoever is your Gran's lead medical care (GP or if she is under a geriatric or other team in hospital etc, they would be involved - in fact, geriatric teams are great for making family understand reality in such cases).

Your parents probably want to do it all themselves, because that is how they were raised. But there are physical limits to what can be done, and then the needs of the elderly person may not be met by family, even though they mean SOOOO well, but could be met under other circumstances with family still taking an active part in that care or even stepping back from physical care and resuming purely family relationship.

[DowntonTrout]

LBY do you have experience of this situation?

Your comments seem to be somewhat idealistic.

I do know what caring for an elderly relative with heart failure means. Caring for someone towards end of life is extremely difficult, time consuming and distressing. It's not something you can do with young children there. (especially if the OPs DS has AS.) I did do it - with an 8yo at home. But I would never, ever, do it again. It is hard on you, the children, and the person being cared for.

That is why Mum, with Alzheimer, is now in a home. It would not have been her choice, but sometimes you have to put all emotion aside, yours and theirs, and do what is practical. Clearly the current situation is not. I think people are blinkered as to how exhausting and emotionally draining caring is. And as I said before- guilt gets in the way and stops people from addressing what needs to be done.

[BiddyPop]

And yes, you have definite priorities in helping your DS at the moment - there are sources of help for your Gran if family will allow those to be used, but your DS may not have another shot at this transition (DD is HF Asp/ADHD, so I can really see where you are in this!).

[ginnybag]

Put your foot down, now, OP. I know how this ends. In fact, I posted about it on here a couple of years ago.

My Great Aunt was very similar. Very elderly, doing alright, then had a 'funny spell' and never recovered her independence. In her case, she developed Pneumonia, was treated and recovered, but never regained her independence, in part, because of the first few weeks after she left hospital.

We started ( Me, my mum, my sister, and both my aunties) off by spending the nights on rota with her immediately after she was discharged. We'd arrive at tea time-ish, make a meal and chat, then go to bed, then make breakfast and leave.

It was meant to be for a couple of weeks, 'just until she gets back on her feet' and for the first month or so, it was fine.

The problem is, she never got 'back on her feet'. The more we stayed, the less able to be alone she became. It went on for four years. And the demands grew as my great aunt's health failed.

Like your Gran is now, she started sleeping during the day, because she was alone and bored, and then wanted to stay up all night nattering. Because she was awake at night, she needed care at night. We started not being able to just leave her and go to bed, because she stopped being steady on her feet - like your Gran - so we were making drinks, then helping to the toilet, back into bed, then a new drink etc etc.

Eventually, she couldn't be left, at all.

Like you, OP, I had a small child - a baby, in fact, born during the early parts of this. I took her with me, at first, but as GA's health dwindled and DD got older, the combination got impossible. Too, we were washing and toileting in the front room by the end (even with a downstairs bathroom!) so GA started refusing to allow me to being DH with me, and the combination of curious toddler and commode was horrible!

And, like you, I (and one of my Aunt's) lived 50 miles away, neither of us driving, so the refusal to have 'strange men in the house' meant we were both faced with a three hour commute each way. We both work full time, she had her own health issues and I had a toddler who I now had to either take (so she didn't see her dad all weekend), and then struggle to cope with because she was mostly being ignored, or leave with her dad (so I didn't see her all weekend).

My sister, 17 at the time, started struggling at college due to the broken sleep on her midweek stays.

My mum, also working full time, started being late for work all the time, because GA would always need 'just one more thing' as she was trying to leave.

Eventually, the only person not massively struggling was the other Aunty. The only one who lived locally, had no young kids, did not work.

Guess who was always on the phone asking when we were 'taking our turn?'

I loved my Great Aunty to pieces, I genuinely, truly did. I do not regret caring for her, but I resent that it was never best for any of us, not even her. By the end, we weren't coping and she must have known.

The thing is, OP, we started off with a woman younger than your Gran, with better facilities by far, with more 'carers' and with SS support, and it still became too much.

If your family start this, you will not stop. I would strongly, strongly say that you must not start. It's not right, or best, or fair to anyone.

Find her a lovely home - they aren't awful dives with heartless carers - and continue to be her family, not her nurses. Enjoy her remaining years, not resent them.

[BiddyPop]

My other gran (not the one I was as involved with, as she has more family physically near her to help out and more paid care involved too - so I devoted my time to farther away gran who needed me more) is currently dealing with 90% heart failure. 1 daughter never left family home, 1 other daughter is heavily involved in physical care, other daughter does emotional support (cooking, letting the other 2 blow off steam and offering tissues, etc) but gave a lot of physical stuff when both grandparents were still able and live-at-home daughter still worked FT. Meanwhile 2 sons are around a lot and do various bits, while 1 SIL tends the garden and other SIL does a lot of scrabble evenings etc. There's a range of things that can help.

But they've found that since she's become bedbound (past 6 months), they use a commode on wheels - which can being her to bathroom upstairs (toilet or to sit on in shower), and be the commode in her room.

Sorry, I keep thinking of things slightly randomly that may help in your situation, but I do really think a frank discussion with family and professionals, including backups for when some are ill, if gran has a setback, how about holidays (she may last a good few years yet) etc is vitally important.

[rockinhippy]

UK ASSISTED LIVING ACCOMMODATION LISTS IN HERE

I can recommend Hannover, but theres lots more in the link

[StWinifred]

That's really illuminating ginny, it's great to have a personal insight into this.

I'd love to send this thread to my parents and say 'look, all these random people on the internet say this is untenable', but obviously I can't.

There are basically two perspectives on this:

• mine, which is I was there last Saturday, I can come round this Saturday again, so they can go away and have a nice break, which I think is a good idea for them, and me having gone around only once as a carer ever, is not a big deal, but then that's not to say I'm going to be caring every wee.
  
• theirs, which is I am going to be going there every Sunday for the rest of Grandma's life, and on that basis they think it's unreasonable for me to go on Saturday as well, in view of the fact that I am going to have no Sundays with my family for the indefinite future, so they are doing me a favour by sparing me that, whereas of course I am happy to do them a favour this Saturday, but not on the understanding that this (to any extent) goes on forever.

[Wingedharpy]

Sorry OP but your parents sound a bit useless to be honest.
Cleaning threadbare carpets while upstairs, Uncles bedroom is left with 25 years of muck covering it and Granny's washing in a bucket doesn't sound to me like they've taken things in hand at all - more like arranging deck chairs on the Titanic.
Meryl is right - you sound like the only practical, realistic one in your family so it will be up to you to make stuff happen.
As has been said, this situation could go on for years - just because Granny is 100 doesn't mean she won't be around for much longer and,it's only been a matter of weeks but the cracks are beginning to show already.
Have you considered getting her a lifeline-emergency-round -the- neck-thingy that she can wear and press should she have a fall?
It's not ideal but it may mean that you would be able to leave her unattended for a bit longer in between visits.
If this was my Granny and my family my starting point to be honest would be to get social services involved as your Granny is a vulnerable adult and needs someone who knows what help is available and can help steer you all in the right direction.
Having Granny take a week or 2's break in a residential home while you all pull together and get the house clean and habitable would also be a sensible move if it is agreed she will go back there. The double glazing could be done at this point too.
Your parents sound as if they are overwhelmed by it all and need someone to take the reins and get things organised.
Phone Social Services today.
They don't move speedily but at least you would feel that you were taking control rather than being brow beaten in to taking things on that you are unable to sustain.

[StWinifred]

Thanks rockin. I looked at the list and there was nothing hugely local, although I'm sure there must be places within a mile realistically.

It's really hard for me to be the one to push granny into a home, you know I don't want to be the evil heartless bastard here, I had hoped that they would come to their senses independently, but I think (a) my sister finds it personally fulfilling and (b) my parents are very pleased to finally get away from 24/7 in a falling down house in an area they don't like, so that just leaves (c) me.

[rockinhippy]

To give you an example, my DPs lived here for a year? The building was state of the art, amazing stained glass sky lights that were actually solar panels, lovely spot & all bills & a 3 course meal included for a reasonable price covered by their disability benefit, & all sorts of facilities on site.

[JammySplodger]

Can you make a few enquiries now into care homes / ss help and propose something so any caring that you are collectively doing has an end date?

[StWinifred]

"Have you considered getting her a lifeline-emergency-round -the- neck-thingy that she can wear and press should she have a fall?"

Yes she has that, but even so the consensus appears to be that she should not be left for more than 2 hours as a maximum. So if for instance I went round with the kids at half-term we couldn't go out for the day and leave her for example, and the amount of stimulation that she requires, were it possible to take her out e.g., in a wheelchair (and this is a bit tricky as DH uses the car to get to work), is very much less than what two young children are used to.