Elderly parents that need help. 4 teens, work full time. DH stressful Job

One thing I’ve learnt from my dads old age, he’s moved around in Last 12 months alone to 5 places. Not by choice.
he has Lewy body dementia. He’s been into dementia specialist units (nhs hospital), psychiatric assessment units, and already 2 different units in care home. Even now the care home we thought he’d now stay in for rest of his life , has “rejected” home as his needs are deemed too great. We chose them as they said they had an EMI ward. Transpires they don’t want to fund EMI (ok, it’s called something else now) as dad would be their only resident with this need so expensive. So we are now looking for yet another place for him to go to.

please don’t move close to your DD with expectation that she’ll provide care. You need to put provision in to buy in care. The burden of care is huge and dramatically alters relationships between people when a loved one goes form being a “loved” one to a “needed” one. Never get into a situation where you’re asking your children to provide intimate care - it’s not safe, it’s not dignified for either of you, and it’s just going to break down the relationship you once had. Daughters do this all the time due to social programming of women to be kind and the social guilt they feel .

also bear In mind that if you move closer to family, that family may need to move agian. I have never lived anywhere longer than 14 years due to my graduate job and ,y parents graduate jobs before that. Until your children retire the,selves you cannot guarantee they won’t need to move again.

I’ve sadly learnt a lot about the whole elder care issues since dad got older. He has a terrible disease. Ive rewritten my whole LPOA and the associated “expression of wishes”. My rose coloured specs are firmly off, and I recognise that I may have to go into a home that isn’t very nice, isn’t what we’d ever want our relatives to go into etc. I’ve also recognised how much placing your nearest and dearest into a position of even part time caring is not on, leads to their own health issues etc. I’ve even had to recognise that sectioning under mental health act is a positive thing, when dealing with these sorts of common aging cognitive illnesses

I’ve also learnt that the best laid plans are almost always going to fail. A bit like birth plans they’re wishful thinking, you might get lucky and meet some of those plans, but all too often you have no idea at all what you’ll be faced with until it get there, and best you can do is plan for worse case scenario .

Hang on…there’s a massive difference between a LPOA and specifically agreeing to be someone carers or taking it on by default

. The two are not connected unless the LPOA stipulates the attorneys is also the main carer. And you can always refuse to be the attorney if someone had written such a daft thing into their LPOA . most LPOA say no such thing, and a solicitor would never allow such a thing to be written

An attorney is there to make DECISIONS on behalf of the person ONLY. and those decisions are defined in scope by the document and the,
lasting powers given.

my dad has dementia now, eldest brother is both his “nearest relative” under mental health act and his Attorney for both his health and financial LPOA. we siblings have all been very clear with social services, nhs etc that NONE of us are his carers. We all have other responsibilities that make that impossible. As do our locations. We visit regularly. We have refined a process to record his issues, health etc on a log we share so we can all see who is dealing with what, what’s happened, and how dad was at recent visit. We share WhatsApp for issues that arise. We track meds, we dial into review meetings on care plan etc. . We make the decisions about his care (we visit care homes etc) and my elsdest sibling does the formal legal signing off on these decisions and moving dad’s money as needed . But none of us provide hands on care. He and the local authority pay for that.

I WAS deemed carer for my exh who had severe and enduring mental health illness for last 20 years of our marriage. The one lesson I learnt eventually, was to be VERY clear with social services and mental health teams that I was NOT his full time carer. I was mum to our two kids, only breadwinner and looked after exh as a wife but I was NOT a trained CPN or mental health worker. I should have made that point a lot sooner in his diagnostic journey. Took me a long time to realise I was just dumped on. After divorce, I said to both our dc to NEVER accept role of carer for their dad, to keep his care plan, psychiatric visits etc at arms length. Yep they have LPOA if needed (eg if he’s ever sectioned). But they’re bright enough to have seen first hand the huge toll that took on me being defaulted as carer. You have to keep a distance and state this agian and agin to service providers. The sad truth is that 50% of people caring for someone with mental health issues develops mental health issues themselves- I managed 20 years but in the end I divorced under safeguarding issues and still deal with mental health issues as a result.

so it is nowt to do with POA, it is default stance that social services, nhs etc would like to do- to offload care responsisiblty to the mug of a unsuspecting relative that is guilt tripped into caring. It doesn’t make sense financially either, as that person in turn will most likely end up needing services themselves

NEVER advise someone not to do a LPOA. This is irresponsible

The problems it causes when you haven’t legally defined who can make decisions on your behalf are both enormous and costly. It costs around £500 a year for instance to pay to OfG for “deputy” (as its now called) as the deputy has to provide annual reports etc. it is a complete pain, as well as the poor deputy not really having any clear mandates over the wishes of the person they are deputising.

It can also vary in the couple. I would like to downsize, move closer to two of my children (they all live in their university cities and no where near us but two are fairly close together) maybe look at a bungalow near my DD which is a sort of elderly community with bungalows and supported living flats with a care home you could move to if the need arose or you can arrange care visits with staff based at the home. I'm early 70s, DH late 70s and disabled and he won't budge. It is infuriating for me never mind our children but he won't even talk about it.

I think we are already there tbh if this thread is anything to go by

We are all mortal and need to consider these things. As you do when you prepare for any stage (parenting for example) How many of us truly understand parenting until we actually do it?

Then they need paid for carers.
frankly you shouldn’t be lifting and supporting with intimate care either. you could completely do your own back in and end up immobilised in your own old age. At the very least they need hoist and you need proper training.

you MUST arrange for a care assessment for them both. That will then potentially trigger financial suppr t to pay for some carer support, but also correct equipment requirements and potential financial aid towards that. You can also ask for your own Carer Assessment. However, funding is limited unless doing it as a nearly full time role

they may not want outside support, or agree to assessment, it’s the one job you DO have to make it very clear to them that you simply cannot care for them at this level,and they must agree or you will be acting negligently. Some,people see get carers in is just one step away from a care home. So reassure them it is vital for them to continue to live independently.

it is not sustainable for you to be visiting and supporting to this level long term. Or your other sibling for that matter even if they were to step up. Maybe they have a better sense of realism than you which is why they don’t engage so much. But, admittedly they should be talking with you about care provision for your parents

please also make sure they have LPOA in place, now, before it is too late. It needed be complicated, but waiting until it’s too late results in a very very expensive and convulted process.

I don't think you can label it as selfish. As your needs increase and your ability to fulfil them decreases, your own world takes a greater and greater part of your brainspace. This isn't the same as the selfishness of a younger fit person who simply chooses to put their own desires above those of others, and if we talk about it as being "selfish" it paves the way to becoming uncaring and inconsiderate towards older people.

I remember feeling guilty about my parents and when I examined my feelings I found that I felt guilty because they were old and I was younger.
I felt guilty because I felt I ought to compensate them in some way for the fact that they were old while I was still young.
I felt as if I ought to restore them to their full power- when they had dominion over me.
Isn't that what we all want but no one can have, to be forever young?

katypp and gloriosaford

I agree up to a point however not all parents are the same, my parents in law made plans and provision for changes of circumstances however, despite taking about it with them, my parents have stuck their head in the sand a bit. Choosing to 'wait and see' as Dad has said and 'not right now'.

Then when things have changed they struggle, they have watched and commented on other's struggles while thinking it will not happen to them.

We are all mortal and need to consider these things. As you do when you prepare for any stage (parenting for example) 😊

I agree that it's unfair to blame parents for the way that they become when they are elderly but at the same time it's not fair to expect adult children to sacrifice themselves for their elderly parents.

We should not have to kill ourselves to keep them alive.

I absolutely agree with this, which is why I am taking exception to pps who think their parents are being deliberately selfish, needy and demanding.
I am not for a minute saying it's not frustrating, annoying and time consuming for the caring child, but unless your parents were always like this, you need to cut them some slack

Me too, they are self-centered yes but they haven't made a deliberate choice to be self centered, I think it happens by default as your ability to keep all the plates spinning declines.

I’ve come to the conclusion that your ability to make those long term, difficult decisions is one of the first things to go as you age, and as your world shrinks, you get very good at being selfish and sticking your head in the sand
I completely agree with this.

I found the ambulance people great with my elderly relative but my experience of them being taken to A&E and then admitted was not so great. I live 200 miles from relative, ambulance told me where she was being taken. I phoned, spoke to doctor who assured me her regular med was there as ambulance people took it, I emphasised how important it was that she got her dementia med on time. The following day I called for update to be told she was in a taxi on her way home, December to a cold house with carers cancelled for the day as I was told she would be still in hospital. I asked if her med had gone with her, same doctor claimed to have no knowledge of that but he reassured me that she had been given paracetamol. I asked about her dementia med and he said he knew nothing about it. Lying bastard.

An additional benefit I've since discovered is that it means their prescription details are on the NHS hub(?) so if they end up in AandE over a weekend it's very easy for hospital staff to find out what drugs they are usually prescribed and the dosage. Otherwise this is almost impossible whilst the GP surgery is closed. I made Dad a laminated card he carried in his wallet with his drugs list on one side and his next of kin contacts (Me, DH,DC) on the other side with allergies and GP surgery. Ambulance staff were very appreciative.

We all had a copy too, so we knew his drugs list

I'm not sure that getting the POA is a great idea. I took it on for an elderly relative and it was a nightmare, Social services very uninterested as it was my problem, when her dementia resulted in her making repeated 999 calls I was the one who got grief from the police. When I told social worker I was going to revoke the POA so they had to pick it up I was told that was fine but they would cancel the carers she knew and liked and use the company they favoured. I said that was unfair as she was a. difficult and b. the carers she had knew her and understood how to manage it. Reply was that was down to me and if I thought it was important I had to continue.

I would never take it on again, I will do it for finance for my husband just to make it workable but for care? Forget it.

After that palaver she realised that electronic prescriptions would have helped and her local pharmacy would deliver too - although I'm not sure if that service is universally available. But of course she has now lost the social interaction of the 4 chats, the three days when there has been reason for her to leave the house. Lack of social interaction is one of the drivers of dementia. But it’s easier for us to look after the physical safety of our parents than their mental health.

Of course maintaining our own social networks is important for us too, both for our own health and to reduce our dependence on our children.And that’s another reason to maintain boundaries.

Sadly, needing help with toileting doesn’t come in isolation. When that day dawns, you will be beyond getting to Switzerland under your own steam.

Think they must have been reading from the same script as mine! .

As is often the case, it took a crisis to convince mine.

@EmotionalBlackmail That is my.next project!
I said my.mum that there must be an easier way and she cheerfully told me they could be ordered online but she 'didn't do that sort of thing' 🙄
They now get their prescriptions delivered occasionally but my mum is convinced they're doing her a favour so she 'doesn't like to take àdvantage too much'.
Honestly, if it wasn't so annoying it would be funny

@Katypp have you thought about getting your parents set up with electronic prescriptions? My DM absolutely refused as she enjoyed dropping the slip off at the GP (chat to receptionist), going back two days later to collect (chat to receptionist), drop off at pharmacy (chat to pharmacy assistant), return next day to collect (more chat). Then she couldn't do it when ill one time, refused to let neighbours do it (didn't want to put them out!) and expected me to do a five hour return trip on a workday during working hours to sort it out! After that palaver she realised that electronic prescriptions would have helped and her local pharmacy would deliver too - although I'm not sure if that service is universally available.

It does make an amazing difference - DH recently managed to get a same day prescription issued without even leaving the house!

An additional benefit I've since discovered is that it means their prescription details are on the NHS hub(?) so if they end up in AandE over a weekend it's very easy for hospital staff to find out what drugs they are usually prescribed and the dosage. Otherwise this is almost impossible whilst the GP surgery is closed.

I feel for you op. But to carve out some Me time, you need to do less. Dont expect your brother to step up - he doesn't want to which is his right, and you can’t make him. Defo don’t expect your kids to help - surely they have their own lives and are busy living them. Your parents need more external help. End of. Alternatively keep doing what you are doing, head slowly to a break down, and neither your parents, nor your own family, will have the pleasure of a healthy you going forward. Please do something to sort this situation before you snap op.

My dh got very stuck in, so it made all the difference but there is no way we could do it now with our working hours.

We looked after both in laws - my parents are just about hanging on. It was too much then, and there simply isn’t the time now.

katypp

Omg I wish my parents had planned all they say is 'we will see what happens' soo frustrating 😳

It has happened (DM terminal cancer and DDad unable to care for himself (never cooked, cleaned etc and proud)

Nightmare 😢