Cockroach Cafe - Autumn

[rookiemere]

A new thread but the same themes, for those of us going through the ongoing challenges of supporting elderly DPs and relatives.
No judgement just support and virtual gins or tea on tap depending on your preferences.

Sil feels that just because the system does not allow for exceptional care to be provided, it doesn't mean it shouldn't be provided. Nothing will convince her, she knows the impact it is having on her - she wants all of us to be in it along with her but we won't, we don't agree with her and that causes it's own problems but were are still trying to be supportive.

Again I am very much reminded that we should not do this to our kids but I fear MIL would have said the same thing when she was younger - she's scared and vulnerable now and she's using everything she has to survive.

I think MIL has become so stubborn she'd say leave me to die, she's not had a good ending - she's been utterly miserable for months.

@glasswings if SIL breaks, and this sounds like it is coming, MIL is going to be left quite literally sitting in her own mess. Possibly for hours.

These are the hard facts which need to be spelt out first to SIL then to MIL. It sounds brutal but the reality is brutal.

My DM is bed bound virtually immobile. To avoid pressure sores she has an air mattress which inflates and deflates to move her weight. Does MIL have similar?

Before DM became fully bed bound her carers could use an array of different lifting equipment to move her from bed/wheelchair/chair/toilet. It always involved 2 trained carers. At no point was anyone supposed to hold or grab DM, hold her clothes etc to move her. Is SIL trained? Does she have the necessary equipment?

This is the big advantage of care homes. They have trained staff 24/7, the equipment. They are designed to host elderly people with constantly evolving needs.

@glasswings it sounds like SIL is very much part of the problem. She has set an expectation that your MIL will be cared for in a certain way and that is what your MIL now expects. Maybe over time your SIL will have no choice but to look at other options as it all becomes too much. Unfair of her though to expect you and other SIL to step into a situation that she has created.

@funnelfan thank you. I think there's a feeling (from my Mum and also my Dad when he was alive) that my DM simply can't be responsible for her own happiness and therefore others need to pick up the slack. But it's impossible, as you say we can only be responsible for our own. If I have mentioned this IRL a couple of friends have taken the "oh but she's elderly and frail, why don't you <insert some additional thing I need to do to try and make her happy>"

I think a lot of people believe that old age is a free pass to give up personal responsibility and that we shouldn't expect anything more of them.

I think the only way this situation will get resolved is when the carers say they can’t manage with one person and they don’t have enough people to cover two and/or sil can’t do nights alone or sil breaks and there is no choice - until there is absolutely no choice then she will battle on.

@glasswings you are probably right.

@glasswings Do you think there's any way you could appeal to SIL to consider the impact on MIL of putting off considering residential care? In particular the fact that it would only take SIL to be unwell for a few nights for her to need overnight carers to be organised at very short notice which will mean much less choice and no chance to really think about options. Is there a chance that this sort of reasoning (rather then the impact on her own health) might encourage SIL to agree to at least looking in to other options (even if just for a short term respite/emergency care arrangement)?
I know the answer may well be no. My brother (I suspect with much less altruistic motives) refuses to even consider the possibility of residential care at any point for DM so I know that sometimes absolutely nothing can get past the 'Never ever going in a home no matter what' stance.

@bigdogpawsno we have already had that conversation and she will just say she doesn’t have a choice and she hopes her health will allow her to continue for the sake of her mum.
Dh feels he’s hit a brick wall and having any more conversations is just causing upset and for everyone’s sake they are best avoided.

You do come to a point were you just have to say "ok then". But my strategy was to have done some research about options when the inevitable happens to minimise the pain at that point.

@glasswings I completely understand how your DH feels. But in my own situation, to protect my own position on this I've found I need to mention alternatives sometimes otherwise the accepted narrative very quickly becomes 'everyone agrees that care at home by family is the only way, but leaves it all to Brother'. In my situation this narrative meant even more upset and frustration when I have refused to step in to the role of overnight carer for a few weeks.

@bigdogpaws
It is so hard to say no to overnight care - the pressure on our the other sister is enormous and we are trying to support her too.
I think we need to ask the carers if they have done a risk assessment in light of the recent deterioration, it might be that they haven't given this enough thought and that they need 2 carers to do their job safely.

@glasswings a risk assessment sounds like a good idea. Have you seen how the carer moves MIL? Any limb or clothes holding is an absolute non starter. Huge risk of direct fractures or clothes ripping resulting in a fall.

Exactly the same risk with SIL if she is moving MIL in the night.

You could frame this as concern for carer safety as there is risk to them as well from incorrect technique being used.

I did notice that CH staff were much more competent than hospital staff in moving DM. Hospital staff were prone to grabbing rather than using the safety straps. DB thought this was better but he's a moron.

I think people accepted caring for elderly relatives more in the past because people just didn’t live as long, on average, so the burden wasn’t for so many years. (Plus factors like fewer women employed outside the home, higher birth rate so more siblings and extended family possibly in the house to watch over someone). They would have heart failure or lung disease or cancer or a heart attack; fewer antibiotics available, fewer vaccinations, so they were just more prone to simply die. Nowadays everyone lives for bloody ever, so you could be carrying the care for 10 years or more. I think it’s changed things massively but it doesn’t get noticed unless you’re in the arena as it were.

@MotherOfCatBoy you are so right. My dm cared for her FIL but he died aged 65 so she would have been mid 30s and working v part time. And it was months rather than years. My SIL cared for her dad at home with a bit of help from us, she took compassionate leave and it was 7 weeks from diagnosis to death at age 70. Again my SIL was in her 40s.
Im late 60s, DH not in great health at the moment, looking after grandkids a bit which is a pleasure. DM and DF in early 90s, both in poor health but not enough to need carers but do need checking in on daily, shopping, admin and taking to appointments. In a paradoxical situation where you don’t want to lose them but wonder just how long this limbo living can go on. It’s affecting my mental health particularly around avoiding planning future stuff, just in case

I don’t think enough people plan for their old age - they spend all their time trying to get rid of their cash so they can access free care - that free care can be excellent but it can also be bloody awful and if it’s awful - who picks up the pieces? Do you burden your family or get left by them to get on with it?

So many things have shifted in the last few decades.

Living on with increasing frailty because of improved testing and treatment. This means an increased burden on older DCs. State resourses are being stretched over a bigger frail population.

The growth of home ownership means we have an increasing number of frail, elderly people unwilling to give up their homes. It was their big achievement, to own rather than rent, now they dont want to give up their biggest asset to pay for care.

Fewer people have extended family in the same area. So the burden of care falls on a smaller number of family members.

So many shifts in society, health, wealth. Each in themselves are positive but the overall effect can create a huge negative.

That's so true. I also think the family/societal expectations around how elderly people are helped/cared for have not caught up with the realities of modern working lives or the fact that people are now living for longer in increased frailty.

I know many people with elderly parents who insist that they must remain in 'the family home' for the rest of their lives and expect their adult children to facilitate it. Their rationale for this usually involves not wanting to give up the lifestyle they have worked for or their independence, wanting their children to inherit 'the family home' and a claim that looking after your elderly relatives is 'what's right'/'just what we do' because previous generations did.

As well as the fact that many of these people are far older and need far more care than the previous generation, this fails to take in to consideration the fact that the adult children being expected to take on caring responsibilities now are themselves older but usually still also working full time. Or the fact that 'the family home' is often unsuitable/dangerous for a frail older person.

No one seems to take into account the physical and mental health implications for the carers. Of course, no one can force anyone to take on caring responsibilities but it is very difficult to simply walk away and leave an elderly parent to fend for themselves in an unsuitable home.

Another aspect is that in past generations, it was common for a wife not to work, even once children were at school. I was at secondary school in the 1970s and my mum had gone back to work, but quite a few mothers of friends didn't work. But this meant that there was a nonworking adult to care for the older generation.

Go back further and families were bigger, with family members less likely to live in other parts of the country or world, so there were more people to share the load. (This is still more often the case in some cultures of course).

As @GnomeDePlume alluded to, so many things have changed that together create an almost impossible situation for many 'women of a certain age'. I know lots of women in their fifties an sixties who have no choice but to work full time as they still have a mortgage to pay and are also supporting DC through University etc but are also now being expected to juggle the needs of elderly parents. Some are also trying to help their own adult DC with childcare, since many employers still seem to expect parents to be at work from 8.30am-6pm when nurseries/wrap around care etc have shorter hours.

DM retired at 60, her parents had died some years earlier but as they had moved 100s of miles away their siblings had done the bulk of the care, DB and I were in our 30s and fully independent so she and Dad had a lovely first 15 years or so of retirement travelling the world, socialising, a bit of grandchild care, volunteering. not a care in the world. Whereas I'm nearly 60 and working part time 4 days plus I'm a school governor and will be doing so for a good few years yet, my DCs are ND and at home/uni not fully independent. And then Mum seems to think I should be able to just jump to it whenever she needs something. She weeps and wails about how awful things are for her all the time with Dad in a home now but she is living in a lovely house that she can manage with a lovely big final salary pension, us to help, friends, her life really isn't that bad and it DOES MY HEAD IN. DFIL has suffered far worse (lost his beloved wife traumatically and has had to have several major surgeries in the last 3 years) and I have never once heard him complain about his lot in life.

I know a 96 year old woman who has become frailer in the last couple of years but is still managing in her own home. She hands the washing out, cooks, does housework, makes jars of (delicious!) lemon curd for the neighbours!

Her husband (who was younger) had a relatively short but quite aggressive illness with dementia before dying about 5 years ago.

The thing is, she (and her husband) have family who help out enormously. One of her adult sons lives with her, but goes to work so she's on her own all day. When he goes on holiday, other family members take it in turns to cover. There are frequent family get-togethers at her house at weekends., when she cooks the lunch!

Now clearly she is lucky to keep her health, marbles and independence this long. But she's also lucky to have such a caring family. Or is she? Is that luck? Or was she a kind and caring mum and granny, even tempered, generally cheerful, the sort of person who people want to spend time with?

Basically if my mum was a more pleasant person and less stubborn, we would probably be less inclined to withdraw. If I had happy memories of childhood instead of panic attacks at the thought of visiting my childhood home, I'd visit more often.

I'm not sure I'm expressing myself v well here but maybe you know what I mean?

Yes, I know what you mean, I had this exact conversation with DH this morning. DFIL lives on his own at nearly 90, drives (competently), shops, cooks and has three relatives nearby that between them visit most days and lend a hand with housework etc and are happy to do so because he is good company, undemanding and never moans, puts the kettle on as soon as you arrive etc. Whereas I am starting to dread visiting my mum and only go when I absolutely have to, I spend my childhood tiptoeing around trying not to set her off fussing and worrying and left at 18 never to go back and now I don't want to go in case she screams, cries and threatens to kill herself when I attempt to leave, as for getting a cup of tea and chat out of her, no chance.

I absolutely agree with all of the above.

And adding to the changes is that many of us had our children later meaning that, in my case, I've still got children (young teens) at home as well as work and trying to support my DM.

My DM had her children in her twenties so we were all long gone by the time my Grandma was elderly. Not that DM helped her Mum particularly but that's another story!

My DM didn’t much support her DM, she left that to my DAunt, the only single daughter out of 4 siblings. Nan died at 72 when DM was 46. Grandfather died a decade previously.
DM is now 90 and still going, DF is 98, I am 54 and can’t see the end….

Having an absolutely maddeningly time with MIL once again. She's incredibly frail and needs significant care, bed bound, largely immobile. Landed back in hospital and she finally agreed she needed some professional care and that a hospital bed could be put in to help with that. Great, all on board, getting that sorted for safe discharge. This morning she says she "never agreed" to that and "doesn't want it". Gah!

Now what. She can't get home under her own steam, but we can't leave her in hospital indefinitely. Feels like a stalemate.

Don't move her, @headstand! That hospital bed is precious!

Do you think she remembers agreeing and is now being contrary? In which case you may have to tell her that you won't take her home unless she agrees to it. Or do you think she's forgotten agreeing? If that's the case, make the argument (to the staff) that she can't retain info and is unaware of the consequences of her decision, ergo her capacity is impaired and therefore her refusal can be overridden; you will be acting in the best interests of a frail and vulnerable elderly person in so doing. (Obviously you know that but you may need to spell it out to the staff. Sometimes they can be over keen on allowing autonomy where it really isn't appropriate).

Good luck!