Caring for elderly parents? Pop in for support/advice/a bit of a rant...

[picklemepopcorn]

Pace yourself, it's a marathon not a sprint!

This is a safe place to offload- don't be embarrassed about how you feel. No judgement here...

There are lovely people here with practical experience of some of the issues which crop up who'll share their hard won knowledge!

cockroach yolo.

Well said Sandwich and Pierce. Well done for tackling house Yolo. I have that mountain yet to climb as not set foot in the house since DM died due to DB being in residence there. No idea what he's been doing to house or with their belongings.

dont envy you that sandwich. So far I have cleared various drawers, chucked loads of photos into sideboard (which was full already) so place more photoready. Spent at least 12 hours going through my father's 50 years of diaries (in the form of A4 ringbinders) chucked away lots of really boring bits about engines at sea; have small pile for me to read through at leisure and much bigger pile for DB. Planning to start on wardrobes on Friday as have to be there all day poss waiting for various bods to arrive. My DM has shrunk so much that nothign will fit her, so I will do big charity bags and extract nighties/cardies/bedjackets that she may want? Somewhere in the house is my father's naval sword and scabbard but no one has seen it for years - is for only male grandchild, so hoping it turns up!! I got ruthless today, chucked out every single toiletry I could find in her bedroom and bathroom - no one wants second hand toiletries do they?

Yolo They don't like to diagnose dementia while someone is actively delirious, as it's so hard to separate the two. We were convinced there was some underlying dementia as mum's confusion was so prolonged and severe, but they wouldn't even consider it until she was discharged.

They'll be thinking they can get a better picture of how your mum is when she's out of the hospital environment and hopefully more settled.

Clearing parents house. They both have dementia and are now in nursing home. They were super organised before dementia so it’s not too bad but still such hard work emotionally.

Had a man with van today to take some bits to my house for later sorting. A million photos. Got their personal papers reduced down to one file.

My mum went through a spate of 'clearing' her house a while ago, but as she has dementia, it meant that complete tat was kept (toiletries that were probably opened at least a decade ago), and valuable things binned (her dad's WW1 medals). So I had to go through the bins to rescue things when I was aware she'd had a blitz. She now fixates on some of the missing items, convinced that someone has stolen them or, more usually, that I have taken them. Not the medals, but a tacky leprechaun fridge magnet. I'm grinding my teeth just thinking about it!

🌺🌺☕️☕️ to all trying to clear houses- dh and his siblings had to clear pil’s house when both went into homes. They fekt it harder because they were still alive- knowin* what to keep was hard. Fil post stroke was still asking for jigsaws etc several years later.
Good to see you whatever

Hi everyone
I thought long and hard before posting here because I feel like you are mostly going through far worse things than I am, but perhaps if we hold each other’s hands…?

My situation
Live about 90 mins away from folks. Took redundancy a while ago with no real plans (good settlement). Single, no children.

Shortly after, my dad fell ill with what seems to be a cancer like disease, but actually the docs admit they don’t really know what it is. He is completely bedridden in hospital but they still have some treatments they can give. I am concerned that they will release him and he will keep bouncing back into hospital, but he is likely to go into a nursing home.

I feel absolutely at breaking point, but I want to look after my mum. So at 43, I’m considering moving in with her. Is that madness?
At the moment, things are so dire, I feel rubbish when with her but also rubbish when not. That said, it probably is less strenuous at my own home because I can at least watch TV and forget for a time.
Mum is also battling with every day tasks – she was the kind of woman who let her husband do everything. So I’m very conscious that if I move in with her, I’ll be taking over that role and may live to regret it.

They are both 80 by the way.

I live in outer London, they live a way away in a nicer place, a nicer community etc but I’d have to make new friends.

I wake up every day dreading what comes next – not helpful that we don’t have a real diagnosis I guess though at 80 I think any illness could point to decline?

Anyway, I’m in awe of many posters here and how you are all coping. So I wondered what you guys think about moving in with mum. We get on but I find watching her age and so on incredibly hard.
I would say to her, if she needs a carer then we get one. I wouldn’t want to be official carer, more companion if that makes sense?

All thoughts welcome and to all who are going through so much.

Welcome grace. Ask yourself honestly why you are considering living with her when you say you feel rubbish when you are with her? You're 43 - what do you think the rest of your life will look like? Gin for breakfast? I would suggest you spend time now putting things in place for your mum to be able to live independently. Bills paid by DD, financial POA, etc. Attendance Allowance goes a long way to pay for things like a cleaner, gardener, etc. Work out what your bottom line is for what you can do whilst maintaining your independance, eg go once a week and do shopping, sort paperwork etc.

And then get yourself a job so that the time you've allocated for your parents doesn't creep into being full time.

My very strong advice is not to move in with your Mum.

You will need that time away to decompress more and more in the future.

With my Dad I visit regularly and help out a huge amount but am starting to put extra support in place in his own home. I really need the times when I'm at home.

Hi grace you are welcome. I would echo other posters- do not move in with your mum.
It sounds like you could do with some time thinking about what you want in your life- 43 is young! As others say, help your dm put things in place but you need to have something in your own tank to be of any use. It is a lesson many of us have learnt the hard way.

Grace I do think you need to think hard about moving in with your mum. It's one of those decisions that may be irreversible as she would rely on you for so much. Although you get on with her , your relationship would change and you would slowly become her carer. Putting POA in place and organising from a distance may keep your relationship in a better place.

Hallo. My Dad has prostate cancer that has spread to lymph nodes and bones. There are appointments every other day and surgery planned to control the prostate so he won’t need a catheter permanently.

Worse than this, he has lost about 50% of his mind. He is so confused and distressed. He has had antibiotics for a urinary infection and I kind of hoped that that would be the explanation for the confusion, but it’s not. He is distressed and overwhelmed.

He is a widower, lives 120 miles away and I am an only child.

I guess my story is so similar to everyone else’s.

I wasn’t expecting to feel so emotional and drained. I am new to all this. It only started 3 months ago.

Hi Undercover. It is the emotional strain that comes as the biggest shock. It is truly exhausting just at a time when you need your energy to cope. I'm sorry your dad is going through this. Please remember to look after yourself and try and find ways to relax. Easier said than done I know.

Piglet - thank you. We are sorting out Power of Attorney paperwork. I really thought this was a long way off. The man was cycling round France in April. He’s 77.

Thank you for all the replies
Undercoverbanana, yes, the emotional strain is so horrendous, it’s quite painful.

This brings me to my mum….I suppose I just really want to look after her, but I’m conscious that could be a decision that goes badly wrong in the long term.

Another option might be to move closer to the parents I guess. I suppose I also see a plus in that it would be a way to move to a new area, get to know people etc, instead of my original plan which was to move somewhere nicer after they had passed away – like Wiltshire or something.

I’ve spent a lot of time over there though, and realised it’s a nice area with a nice community feel and it doesn’t feel too much like “London” which is what I wanted to get away from.

I’m finding myself increasingly lonely – most of my friends are married with young children, or still madly bar hopping and eating out etc, not stuff I wanted to do. So helping mum and getting to know a new community seemed, on some level, like a good idea, but I’m aware there are long term aspects to consider.

I’m assuming dad is going to pass on soon because he is so ill but to be fair we haven’t been told that. I never thought living with uncertainty could be so hard. Then I find myself thinking, am I just really ill equipped to deal with this because I’m single and don’t have children, therefore haven’t had to do any kind of “for better or worse” for anyone? I don’t know.

grace and *undercover, I feel for you both. The thing about retaining your own self, looking after your self is very important - hard to do, but we all have to learn to do it. I think as women we are socialised to 'make things better' but in situations like this better is not really an option. 'least worst' is perhaps as good as it gets.

I became DM's carer by default over the space of about 10 years. I never wanted to be a carer and it's not what I'm good at. I think if you move in - and you could be doing this for 10 years or so - you would be really risking your independence. Could you move closer, so that you are not constantly at DM's beck and call? (although even that gets bloody hard as they get more fragile...)

@Grace212 I would like to join the other posters urging you not to move in with your mom. I can totally understand why you would consider doing this, and, I have the feeling that had I not had my own family I would have done this myself 18 months ago when things were really difficult and my parents were refusing any outside carers.

I have got a friend who lives with her elderly mother. Basically, my friend never left the family home in her 20s as most of us do. Fast forward a few years, her brother has a career and family, rarely visits, her father passed away a couple of years back and my friends life is now solely taken up with work and caring for her mother, now in her 80s with physical disability and dementia. She has promised her mother she will never let her go into a home, but has absolutely no life of her own.

My friend is 52, she may be doing this for another 10 years; I see her giving up her job to full time care. You are 43 years old, that's in your prime, please don't let this be you.

On the other hand if you are happy to move closer to your parents then a shorter journey can take away a lot of stress of the amount of time hospital visits etc take. Do encourage daily carers, gardener, cleaner, day centre day out, help set up online shopping delivery. Keep on persuading in your jolliest voice. I don't think I did this enough, gritted my teeth and got on with things until my parents homelife was actually dangerous (gas appliances turned on, not lit etc)

After a year of increasingly costly 24 hour home care my parents are both now settled in a lovely care home. Obviously it's still difficult when your parent with dementia thinks you're someone else, or asks you to rescue them from the army of people in their room stealing their things; and there is the house to clear and sell. But compared to my life 18 months ago a weight has lifted.

DB's best laid plans seem to be coming to nothing at the moment. POA doesnt come through until Nov 8, without which we cannot pay the almost £10k (!) deposit asked for by nursing home he wants her to go to. Obviously it will then take a few more days to provide certified copies etc, organise private ambulance (£900) etc etc.

In the meantime, hospital wants her out, they can do nothing, and won't keep her another 3 weeks or so til her affairs are in order. Discharge Team meeting this lunchtime, most likely outcome is they will move her to local cottage hospital. Local is a bit of misnomer, there are 2, each 1.5 hours away. I assume they will move her as soon as there is a bed available.

Really, I hope this will be her last ever move and that she comes to an end as soon as possible. Such a bloody cruel process - for everyone, not least her.

Please can I join in and have a rant? DH isn't helpful, as he gets as screwed up by it all as I do, I just need someone calm.

Aged parent district nurses in twice a week, in theory. DN has been 3 times today, not waited long enough for him to get to door, not asked me to drop round with key, third time rings me and says "I haven't got time to do anything anyway". He won't have a key safe because of security, won't let me get an electrician in to fit a intercom by door (because he has a perfectly good one that he can fit himself ....).

And he won't let me book a chiropodist because "it's not urgent, you don't know what the DN will do next week" (One thing I do know - she won't do his toenails).

This is just the last in a long line of things where he's making life more difficult for himself, often by deciding something is too risky (eg can't get an electrician in because they would condemn his supply and he'd end up with no electricity)

Every time I visit him or phone him, I end up needing down time (MN and wine) - "popping in to see he's OK" ends up as 2 hours visit and 1 hr recovery. How can I stop letting it take such an emotional toll on me?

I don't know Mere but when you find out let me know!!

I am trying to let go of the image of the happy settled and above all grateful mother in my head. She's 84, life is intrinsically not great for her and there is not going to be an answer that pleases everyone. My sister is still hell bent on making her life objectively better on our terms. I am very slowly accepting that extreme old age is a foreign country where the control to make things worse is better than lack of control. Your dad retains the ability to stop people entering his house - maybe he prefers that to having the DN visit whether he wants her to or not. In the same way my mother would rather die of a mouse-borne disease than let us organise a cleaner for her.

Having said that, the Dn is being fairly irresponsible. Don't let them offload their concerns onto you.

extreme old age is a foreign country where the control to make things worse is better than lack of control Very nicely put! Analogous to the guidance on the Power of Attorney website that capacity also includes the capacity to make bad decisions.

Welcome Dint. Sometimes it takes someone in authority (preferably a man) to get that generation to see sense about those sorts of things, rather than us? DM also refused a key safe etc, until OT told her she had to have one, then she complied. Is there anyone who your dad would listen to?

grace write lists. First one is what you gain from moving in with parent and second is what you lose and what you risk.
Then write against those lists different ways of managing those outcomes.

Themes of this thread:
Difficult relationships
Difficult dealings with hospitals and social services
Family dynamics-No one gets it unless they live it...
Impossible to help and resolve the many challenges of dementia and old age because everything seems against you but particularly the elderly person you’re trying to help
Guilt
Exhaustion
Emotional toll
Wine