Responsibility for Elderly Parents? Support thread right here!

[Needmoresleep]

Several of us are on the same journey. Some more difficult than others, some longer than others, but none easy. Feel free to share tears, rants or laughter with others who will understand.

Wow. I found it really difficult, despite the fact that my mum is in reasonably good physical health. It took over an hour. I don't know how your dad managed.

I got my mum using the shower by going down each week and insisting. I would promise an outing after. She now lets carers help. However despite the short term gain it is bound to be one step forward two steps back. I think you can get some form of blow up pad so the person has their bath and is then lifted up. A shower, though, is much easier.

Hello everyone on this post and again my best wishes. We have a lot to deal with and are all doing our best. Taking baths is one thing Dad can still do (with assistance from me or a carer). But one of his latest kinks is to turn the bath on, and wander off. Cue flooded bathroom. He continues to be quite restless, will exit the home as soon as he is awake, whether dressed or not and sometimes his carers then have to run after him and try and coax him home to dress him.
I have had to take a day off work today to go to his home town and attend a multi disciplinary meeting re his needs and care. I know the dementia team are thinking of the next step ie what to do once the carers can no longer cope, maybe because dementia has progressed. I have been asked to visit a very specialised home in a depressed seaside resort in his county. Also to investigate places near me in london. I must admit I have done neither. I feel i have enough on my plate and the thought of going to visit a place full of sectioned elderly persons just fills me with foreboding (maybe it wouldn t be that bad, but honestly I can t imagine it'll be great). To be honest I am hoping it won't come to that, that he'll either progress into some kind of placidness, or will die suddenly. But hey, his disease so far has mostly thrown unpleasant surprises at us, so why would it change now?
Sorry it sounds self pitying. As I said above, all best wishes to everyone on this thread, in this season which is hard on those us us with dependent elderly relatives. xxx

Hello Bob,sleep,cmot and ping pong and everyone I've missed. So sorry to hear your challenges and juggling acts.

Bob we were lucky in finding a specialist dementia nursing home for dmil's last few months where the care was very good. I know some of these places are awful. My dh visited pil at the weekend who told him he'd had an awful dream that mil had died. Dh had to tell him gently that she had in October.

My dm is grumbling away- I've had to remind her that at least she can get out, walk with a frame and eat proper meals- unlike my fil and brothers mil who has just had a stroke.

It is all tough- trying to emphasise positives, plan small treats and look after ourselves. Sympathy to everyone. Be kind to yourselves.

Hi everyone. Sorry to hear of people's difficulties -:it always seems even harder at this time of year. Bob, sorry to hear you need to go and look and can well understand how the idea of it makes you feel.

Allfur, huge sympathies on the waiting for a crisis thing. We had to do that and it was so stressful. In the end Mum had a UTI and was fairly dehydrated. The GP told her to go and she felt so ill she left without a fight clutching her sick bucket. She then fought to go home with live in Carers but that is a whole other story.

I've bought a tiny business so been really busy. FIL ' S live in Carers are going well thank goodness. Would love to say all is calm with Mum but it has been an ongoing saga.

The cellulitis which flared up in the summer has been ongoing. Each time it nearly heals she takes the bandages off and it gets bad again. She is very paranoid ams says the staff pours acid in her legs. She has apologised for the last time she told me to forget she is my Mother but if will no doubt happen again. The NH have said a couple of times she might have to leave.

We've found a new Dementia unit that is being built but not finished until Feb. She was assesses recently by Psych team with a view to starting anti psychotics though not heard result of that assessment. She is however being compliant currently as far as I can tell so if that is the case we will hold off. However they may well have started her without telling us as communication is very very poor..

We're all going to see her on Christmas Eve which will be the first time DS will have seen her since poison cake episode.

My relationship with my Dad has improved hugely since I discovered her Web of lies about him and other family members so that is good. I am fairly emotionally detached from her these days and quite philosophical about it all . She won't ever be happy after my Brother bounced her out of first care home, they are now places to be escaped from, until her cognitive function declines to the extent that she can no longer plot .

I hope that everyone has as good a Christmas as possible in the circumstances and wish us all fortitude for whatever 2015 brings.

Wishing everyone peace,joy and strength- thank you for being part of the journey.
Look after yourselves and those you love

Sending everyone strength and good wishes for a joyful Christmas, in whatever form it takes. Also sending thanks for all the support and wishing you all a very Merry Christmas

Feeling particularly glum today. I really feel like I should be sitting with Mum but I really don't want to. Partly because I've got a cold type lurgy, and partly because it's so damn depressing being there. Which makes me feel bloody guilty on top. Gah.

She has (a) hurt her back again and is hardly able to get out of bed, and (b) has been taking more painkillers as a result which may have made her feel sick, and has been throwing up etc since this morning. Emergency doctor was summoned, prescribed different anti-nausea pills and left. She said she didn't trust him - it's not clear whether this was because she'd not met him before or because he was Indian

Mum has mentally packed her hospital bag (as she does about once a fortnight) (& made me write a list of things to pack while I was there this morning) as she thinks she should be on a drip. She lay there this afternoon saying things I like she would rather have something take her quickly than have a long drawn out illness like the one she has. I have no doubt she feels awful, but she's instantly predicting the worst every time she has a new pain or a stomach upset. Dad is at the end of his tether again and they are shouting and crying at each other in frustration, fear and sadness at their situation. Dad is badly organised and forgetful, mum's mind is spinning with things for him to do.

Sorry, needed a rant. Hopefully she will eat something tonight and improve a bit with the new pills. I need . Is it too early?

Hi PingPong just seen your post and sending my sympathies. Long term support of elderly parents really is very tiring and draining. My morale is somewhat low too- the weather doesn't help. So i admit i am struggling to find positive things to say. I guess when it's all over we'll be able to say we were there and supported our parents. Not everyone can do that.
Dad is markedly frailer, slower and more confused than even a couple of months ago. Not sure if this is disease progression (the Alzheimers) or his infected tooth, which seems to be taking weeks to get sorted out. His dentist can't do the extraction, so is referring on to some place which you start at no 19 in the queue when you ring... Meanwhile his care is costing in excess of £4000 a month and at this rate I will inherit nothing. Maybe that's the last taboo, seeing as it mixes money and death.

Ping Pong and Bob, not a lot to say other than the days have started getting longer....

Ping Pong especially, both you and your parents have gone through a lot over the past few months. I cant really offer advice other than to pace yourself. There is only so much you can do to make things better, or indeed keep things on an even keel. Take pride in the fact that your parents know you are there for them, even if they don't say so. And find a friend or two who have been through similar, meet in a decent wine bar and off-load. Keeping perspective is crucial.

And Bob, it does sound as if a home is becomming inevitable. Your father deteriorating might not be such a bad thing. My mother has now lost a lot of fight and stubborness and accepts (though not always without moaning) both my role in managing her affairs and where she lives. She was quite depressed during the summer, saying she had nothing to look forward to. Now she seems much happier. I suspect she has lost more of her orientation so is more able to take each day as it comes. That and having a carer she likes.

Thanks NMS. Like the idea of meeting in a wine bar, but really i am the first of my contemporaries to go through this (and the last to have kids... so really well sandwiched!). I know Dad being more tranquil has its upsides, we may be able to get him into a more mainstream care home rather than the EMIs I dreaded. But still it's sad seeing him passive and knowing it's his horrible disease just marching on through his brain. Just got an email from the dementia team saying carers have reported my brother rough handling Dad and shouting at him. Something else to worry about. Aargh.

Thanks bob & NMS. Yes, whatever happens I can definitely say I was there for them.

I am very lucky to have a lovely friend who sadly lost her Dad through cancer a couple of years ago, & her Mum had surgery for cancer last year but has just been given the all clear. The friend is a real 'enabler', and fellow wine lover too, so that helps. And everyone on this thread helps too - even when there’s not much to suggest in the way of ideas, it really helps to exchange thoughts and worries, experiences etc, particularly late at night when it’s all getting a bit much.

NMS it sounds like your Mum is reaching a place of peace and hopefully stability. That’s good. bob I'm so sorry to hear that your brother is causing issues with your dad - just when you think things are settling down, something else comes along to mess it all up. Does your brother have MH workers who can help? Virtual for you to keep you going.

Thanks PingPong bro has his own mental health issues (although I'm still not sure what diagnosis if any- there was talk of Schizophrenia 2 years ago when he was really bad but of course his MH team do not have to disclose stuff to me as he's an adult. ) Maybe the team can help. Weirdly, bro does not want Dad to go into a home but is totally unrealistic about the reality of dementia as disease . I'm going there on Sunday and will have an explicit talk with him, probably along the lines that Dad is likely to die within the next 3 years (plucks figure from air) behaves the way he does because of his disease not to piss people off, and does my brother really want it on his conscience that he made Dad's last years a fearful misery.
Glad you have a good friend to support you. My best friend's parents are still around and of sound mind, but her step mum is dying of cancer. But to be blunt, her level of involvement with elderly relatives is a lot lighter, because she has 2 very competent sisters so they share things out. Still it's good to talk with someone you trust.

Bob, is your brother frightened of his future without your father? Five years ago when my father was dying, and before my mothers dementia was recognised, she was really quite agressive towards him. Looking back they were coping because she was physically fit and he had a memory. She was then terrifed about him leaving her to a very uncertain future and this came out as anger towards him. Could you frame the conversation with your brother in a way that reassures him he will be OK, and that you both need to work together to ensure that your father is properly supported.

Also last summer I found myself grieving for my mother. I think it was healthy, as it has made it easier for me to now treat her as a problem to be mnanaged (sounds awful, but I hope people understand what I mean - its that a level of emotion has been taken away as I have acknowledged that I have lost a good part of the person she was) and at the same time enjoy the good days. One example is that when I take her out for a coffee by the beach, I am now dont try to make conversation. If she wants to simply sit and watch the sea, small children and dogs, thats fine. If she is chatty, but repeats herself, that is also fine. Its a strange sort of acceptance, but a lot better than expecting her to be someone she no longer is.

Thanks NMS as ever you find the right words. Indeed bro is deeply scared he'll be abandonned once dad dies/ is in a home. i had asked him about it a few months ago and he admitted it and I tried to reassure him I'd still be around to offer support. Which I do plan to be, obviously within certain boundaries. I will be very frank with him. I suspect the dementia team could step in on a best interest basis if they felt Dad was unsafe, and get him moved out. Maybe if he realises these facts he will back off a bit instead of losing it next time Dad something that inconveniences him.
I suspect I have done a lot of mourning Dad already. When I think back to what he was like (and I have been too busy firefighting to reminisce much) social ,witty, energetic, articulate the contrast is great. Mostly I just accept things, but after evensong on Christmas day I burst into tears.
You are right though acceptance is sadly a good thing in this situation and i am glad you find it easier to be alongside your mother these days.

to PingPong and Bob for what you are going through and to NMS for her wisdom.

I feel quite emotionally detached from my Mum if I am honest and that I have moved to a new stage of this journey.

My Brother is pulling out all the stops to get her over to near him. I think this all hinges on whether he can get her certified fir to fly. I support this now as think she will be better nearer him as she is keen to preserve their relationship and she can see the baby who will know her no different, have one on one care when she needs it and be in a place speaking her native language if she reverts.

All is calm on FIL front so we are enjoying that whilst it lasts. I do find now I cam appreciate the quiet times and accept that my Mother may never be happy where ever she is for the rest of her life. That keeps my Brother awake at night but not me anymore . I am in a very different place from this time last year (thank goodness) ?? Bugger, I think I have posted an emoticon that won't delete. I hope this happens for PingPong and Bob and anyone else reading who is struggling right now.

Thanks SugarPlum I am really glad that after the absolute misery you went through you now have a measure of detachment. Who would have thought a year ago your bro would be taking this on? Well done for stepping back. I know I sound like I am failing miserably on that front, but really i am not as victimised by the situation as i was two years ago, when I struggled to get through a day at work wihtout crying. I do have to watch out and not getting over involved, and miss the good things about the present moment.
Thanks again for your kind thoughts.

Hmm, I might have spoken too soon. Thought it was all systems go to extent her passport got sent up to someone in preperation for Visa this morning. However this afternoon he has decided he isn't physically up to it right now so waiting till May and move her in interim to the other one I looked at. Suspect now she will remain there as the enormity of what he is planning is hitting home.

I'm glad you're not feeling as victimised. You're at a really difficult stage right now and I think you are doing really well in the circumstances. You have your Brother to consider as well which can't be easy.

I found learning to say no very hard to start but with practice I am quite good at it. Brother asked today if I would be available to take her to chose a room at new place (new build). I said probably not as have lots of work on and DD gearing up for GCSE'S so have trips to Tutors to factor in as she has dropped one of her options and taking a language she studies out of school instead. My Brother accepted this and has asked the new CH to pick her up and take her and we have left it that if I can I will go over but it is unlikely.

It's about having control over your life I think. The unpredictability of Dementia takes it away and makes it very hard to claw back.

Yes definitely dementia doesn't just claw away at the victim, but at their relatives too and we need to learn to fight back against it. Well done for asserting yourself. After the years of you single handedly dealing with everything, it's good your bro is doing a few things now.

Well done on getting your brother to take responsibility for the move SugarPlum.

My dad is very scared about mums future, and his own, and it comes out as anger sometimes. So I can only imagine how scared your brother must be Bob.

They are getting a bath lift, and I found dad a lovely cosy toes for his scooter on ebay, so he's accepted that.
Dad is still having his leg dressed, after a bit of a saga about it all over christmas. Hoping it will heal still

Sending support to you all.

My turn to feel quite down. Nothing really to do with my mother, instead it seems to have been sparked by my SiL retweeting something about the need to value the elderly and not ignore them.

My life is to a large extent on hold, and I am an expert in services stations on route to the south coast. This may go on for another 10 years. Ten years of at least once a month vists, long round trips, admin and property mangement. Even small things like finding a new battery for her cardreader can take a chunk of my time. DB does none of this, only a very occassinal and short visit. I have had two years of dealing with carers, the NHS, builders, and my mother herself. Yet DB is angry with me.

I need to sit down with him and work out something sustainable on my mother's asset portfolio. (One property lost its roof in last winter's storms, another has a building plot next to it and developers with very fancy plans for it, so complicated submissions to planning, claims for loss of light etc, and I had builders in a third for four months last summer with difficult complications around structural walls and building control.) It is after all his inheritance I will be making decisions on, and presumably I hold some responsibility if any decision I made went pear-shaped. Yet he wont speak to me or reply to my emails.

Things were pretty grim a couple of years back and I get absolutely know how difficult it is for those who are in the midst of firefighting. In contrast I have had two years of sorting out unsuitable investmestment, completing my dads probate, getting property to a state when it can be properly let or sold, submitting tax returns going back years, and getting my mother moved and her care sorted. Bar one small bond which matures in February, and my dad's premium bonds (a mound of form filling that makes even banks look user-friendly for Attorneys) it is all done. I thought at this stage I would feel extatic. It was a real mountain to climb, and I have to learn a lot so much.

Instead it feels quite bleak.

I suppose I want two things:

1. for DB to turn round and say that he knows it was difficult and that he appreciates what I have done.
2. to identify an escape route, even a temporary one. Now everything is transparent and under control is there anyone who might take over some of what I do. Even so I can go away on holiday.

Sorry it is a bit self indulgent, and I recognise I am better placed than most, but I need to whine.

Hi NMS just found this and sorry if i am less than articulate have had a couple of glasses of wine. I 'll understand if you can't be too specific (does SIL frequent mumsnet I wonder?) but what was she thinking? Was it a pointed comment? If i was in your place I'd be well fed up at the hypocrisy of the statement when you've been doing 95% of the supporting the elderly in your family.
Nothing wrong with being self indulgent. Sometimes people only appreciate you when you start to do LESS not more. What you have done amounts at least to a part time job. So why not just book that holiday and if there is a crisis...make sure your mum's sheltered housing has your bro's no. And make sure you are not contactable by your mum's accomodation/ carers.
Everything seems simpler after a couple of drinks, but maybe try a bit of selfishness?

Hi NMS. Just wanted to tell you you are doing an amazing job even if DB will not acknowledge it. I know my DB (Not seen for 10 years) will be here like a shot when there is money possibly to be had.
Can you arrange cover and just get away? you deserve it so much.

NMS you have coped brilliantly with everything life has thrown at you – looking after your DM sounds full-on and emotionally exhausting. I know full well that even though things may appear settled, a crisis can strike at any moment and then your own life takes a back seat, so you remain in tenterhooks for the next call. You say you are ‘better placed than most’, but it still doesn’t mean you are free to do your own thing. That can be very claustrophobic. I’m not sure I would have had your fortitude given the lack of help from your DB.

bob’s suggestion about giving your DB’s contact details to the manager at your DM’s home is a really good one. You NEED a break, preferably where you can’t be dragged back to deal with something that could wait a week or two. Be strong, stand up for what YOU need. You deserve a break for your own health and wellbeing, to rest, to catch up with your own needs.

Not self indulgent at all and very realistic. Your SIL re tweeting that given their involvement with your Mum is a reflection of her and not you.

Now everything is more organised after your extremely hard work it makes total sense for you to step back. You are entitled to your own life and it isn't fair that your Brother gets to lead his whilst yours is on hold.

What you do about it us the difficult bit. However a holiday with your Brother as the contact in your absence is a good start. Can the care agency potentially fill your shoes to some extent or employ someone on a standby basis to be available to sort things as and when they come up?

I'd also personally have a solicitor write to your Brother re the property decisions to request either a formal response as to his wishes on the property or to sign to say he wishes to have no input in the decision making process and therefore will have no future recourse.

You have tried to be reasonable and he won't answer emails so you have nothing to lose at this point.