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.

So sorry ping pong- is hospice an option? So much to deal with.

So sorry to hear this. It sounds like the hospital and macmillan team are doing all they should, good to hear CHC is being pursued, but of course all this is nothing compared to the fact that your mum is very ill. Wishing you and your Dad strength.

So sorry Pingpong You must be drained.

I don't have a good feeling about my Mother. She is apparently rambling and coughing all over the place and I think her heart failure is going to lead to pneumonia and she still has raw legs with cellulitis. May well be wrong but feel her body is giving up and have been trying to persuade my Brother to come. He just says he doesn't accept that she might be near the end and simply needs the right Antibiotics.

Thanks everyone. Drained is the right word. But I'm not as drained or as tired as mum, or dad of course who is contemplating the loss of his wife of 56 years.

CHC assessment went well, the MacMillan nurse who carried it out is just lovely, seemed on the ball & confident that mum will get fully funded care. She's hoping to confirm this later today or tomorrow & will come to visit mum in the home on the day she is transferred.

I asked about hospice care, but the nurse said that a nursing home should be able to provide everything that mum needs right now. Only if the nursing home can't cope with her care needs, would they consider a hospice stay.

Two things keep popping into my mind from yesterday - the consultant said they were putting a DNR on her notes (in agreement with us), & Mum's comment that she won't need her summer clothes to be brought back from their home in France.

Oh ping pong I am so very very sorry. What the consultant and your dm said must have torn you apart. Sending you and an un mumsnetty hug. My dmil spent her last few weeks in a nursing home where the care was excellent. Your poor df.

thank you so much twenty - I am sitting crying at all the kindness we've been receiving in the last few weeks. The support on MN is so so helpful. I hope at some stage I will be in a place where I can support others too.

I have received so much help and advice from here and know what it feels like to deal with all these awful practical and emotional issues. Glad it helps to know you are heard.

Thinking of you Pingpong

End of a difficult week here trying to manage my Mother's deterioration and my Brother.

She is now completely bed bound and I couldn't even get her to lean forward to pull one side of cardi round her, very weak. Still eating and drinking but can't stomach porridge anymore so switched to something lighter and suspect this is start of appetite decline.

On steroids and has nebuliser plus new Antibiotic which are helping chest a little and wheezing less. She seems fairly with it then will suddenly think she is in America.

She is desperate to see my Brother who as usual is stalling coming over. I can't see her getting back on her legs now. This has only just started and she is trying to fight a lot of infections so am open to the idea she may respond to new meds but know it is very unlikely.

She isn't fighting me any more and does actually want me to come in now which is easier and harder all in one go.

Current Home have confirmed won't kick her out till new one ready which is huge relief. Hopefully that will be ready in a month but heard that before. Am going to have to find out transportation options as non ambulatory is a new one on me and haven't got my head round the new logistics needed yet .

DH starting new job this week and will no longer be working for my Brother which is a good thing for all of us.

That is sad.

Though from what you say it sounds as if the game playing has finally stopped. She is recognising you are there, and welcomes it. Whatever your DB does is up to him. Mine barely visited my DF when he was dying and I think this is something he later regretted. (Similarly I think he was in some form of denial.) FWIW I think after everything you will find it was important to be there.

Sugarplum.

Good to hear your Dh has a new job though.

Theres quite a lot of wheelchair accessible taxis around, so that shouldn't be too bad to find.

Pingpong - how are things going?

Thank you both. I am finding I want to be involved now so have a few things planned for this week to take her. She is desperate to see him but again he struggles to come and has been busying himself with looking at medical escorts for flights.However as my poor Mother says, the idea of getting out of bed to the toilet seems insurmountable now let alone on a flight.

I think the NH mentioned ambulance transfer last week but things got a bit blurry at that point as I hadn't realised how bad she was and it was a shock.

I guess we will see how she responds to the new meds this week and maybe she will improve but I have this feeling that this is a new phase of the disease. Unfortunately as solicitor involved the health professionals are cagey and not inclined to say what they think.

I think I might look at CHC in the not too distant future if she doesn't rally.

Sugar - it seems that our DMs are getting to a similar stage. DM is incredibly frail now, I’ve been helping her to drink through a straw, she only eats shakily with spoon, cannot move her body at all and her feet only shuffle an inch or so at a time.

We are contemplating a formal complaint to the hospital as they are not completing her monitoring charts, not checking her every 2 hours as per her notes, she was left for 4.5 hours one evening in a lot of pain which left her crying, despite repeatedly pressing the call bell and calling out, & the physio & consultant’s instructions that she should always have 2 people to move her in & out of bed is being ignored. Somehow these instructions never made it onto her notes . Oh, & the physio also recommended that her blood pressure is checked before getting her into the chair, in case she passes out. That’s never happened, except when the physio is there . Oh, & after a week in hospital they've suddenly decided she can't have salad as her neutrophils are low & she can't fight infection. They've been rock bottom since she was admitted, & they only decide that now, fgs??

The better news is that CHC funding is confirmed & she moves tomorrow to a NH which is less than 5 mins walk from Mum & Dad’s house. It has a good CQC report, local friends have recommended it, & although my heart just sinks at the thought of Mum having to take this step, I think it will be fine. It looks & smells clean, food looks nice, staff are welcoming, ratio of carers to residents looks fine, & when we returned today with more detailed questions about how they will care for mum's particular needs, we were much encouraged by the manager's answers, & the general friendliness & positivity of staff. Her room is not big, but is larger than many others there (which looked no bigger than the student room I had in student hall in the 80s). Not en-suite but the bathroom may as well be on the moon, given Mum’s complete lack of mobility.

Even better news is that Dad’s sister is coming over from Australia next week, for 10 days. Everyone is thrilled as it will be a huge boost for Dad, will ease Mum’s worries about Dad, and will take the pressure off me for a bit. Next step will be funeral planning. Mum's already in thinking mode for that.

I completely failed to hold it together over the weekend. Lots of family time with the DBs, lots of talking and emotions coming out. I told DH I really, really need someone to take care of me, & although he needs a nudge, DH does a great job once he's started

Pingpong I am so sorry. It is hugely emotional when someone moves into a NH, however much you know they need to. And although highly sensible, I can't imagine a conversation about funeral planning and how hard that must be. We've got as far as knowing she would like to be cremated and her ashes scattered by the river where she grew up (not in this country) I can see my Brother not turning up, Mum has a sister abroad who she is estranged from, my Brother is estranged from my Dad and the whole thing blows my mind a bit.

Really pleased your DH is doing a good job, you do need someone to look after you. CHC very good news as is your Aunt coming over.

DH came with me today to NH as I wanted his opinion . She is less grey and had just been washed so looked a little better and was brighter and less confused. Still in bed 24/7 and no sign of walking or getting up. She was described by the staff as 'feisty' today which I guess is a sign she feels less unwell. My Brother emailed and said she gave him a hard time about getting her out of there.

The problem I have is I think no one will really tell me where they think we are time wise as they are scared of the Solicitor and being sued. I guess the reality is no one knows. It is hard when my Brother talks of recovering and her walking around when I look at her and think no chance but maybe I am wrong. One thing is for sure as the nurse said today, she is very sick.

Its good to hear your mum will be moving to the NH Pingpong, and that your aunt is coming over for some support.

Sugar, I think when it comes to funerals, you invite/inform everyone and let them decide whether to come. My mums brother never speaks or writes to her, and hasn't seen her in 16 years (and that was at their parents funeral), but I know he'll deserve the offer of making his peace.

So sorry to hear the news Ping pong and Sugar. So much going on-so much to handle.
I know it is of little comfort but just wanted to let you know you are being heard across the Tinternet. Take care

Sugar up until last week we also had no real idea of timescales for Mum. In September we were given a leaflet which said that survival was an average of 14 months from diagnosis of MDS, for those of her age, with her strain of the disease, but it depended on treatments and advances in medicine. About as much use as a chocolate teapot. More useful was the opinion on what treatments would extend her life, and by how much, so she could decide on whether to choose them. Sometimes I look at Mum and think – wow, she looks better – & it’s hard to believe she’s so ill, as the damage is all going on in her blood. But then she gets sleepy, or I see her struggling to move, and it hits home. The rollercoaster continues for all of us.

You’ve probably already seen this, but in case you (or others) haven’t – I was looking back through this thread as I thought someone had posted about a Radio 4 programme about getting CHC funding, and how difficult this can be. I found a transcript here - news.bbc.co.uk/1/shared/bsp/hi/pdfs/18_11_14_fo4_continuinghealthcare.pdf and on the programme there was someone called Dan Harbour from ‘Beacon’, who help people with CHC problems. Their website is www.beaconchc.co.uk & they are apparently endorsed by AgeUK. They have a free ‘navigational toolkit’ and a good FAQs page. I get the impression (from MacMillan and CH manager) that it’s a bit of a postcode lottery.

Twentyten – how are things with you & your family? Thank you for posting.

Hi ping pong. Thinking of you. Things with me are calm- my mil died in October which was a release after Alzheimer's which we are still sorting out- fil is settling but still needs reminding mil has died but is in an excellent care home. My dm is stable- needing looking after but planning her 90th later this year. Dd has got her uni offers and seems less stressed which is good.
And I am doing less- having learnt to my cost that I cannot do everything, and giving myself permission to do less.
Please look after yourself.

Oh pants. Dad rang (while I was taking ds to school) to say he was going to hospital. He said he had another kidney stone, but who knows.
SS have put emergency carers in for now.

So of course, I feel bad because I can't be there, but also because I feel so darn resigned to it all kicking off again, and that I should be more worried about them.

CMOT I am very sorry to hear that . I think resignation is something all of us on this thread can relate to. It is part and parcel of the Dementia roller coaster we are all on.Did you hear anything yesterday evening about how he is ?

Thank you Pingpong for the CHC info, very helpful. I can imagine the disconnect in your head seeing her look well must cause, very difficult for you all .

Twenty ten I am glad things are calm and somewhat impressed that you are saying that with a child in Year 13 - my friends with children in that year are looking a little harassed !

At the moment my Mother seems to have rallied so my Brother insisting her meds were reviewed has paid off with I factions abating, for now.. She is very grumpy though and very indignant about the hoist being used to move her.She keeps saying she will be really difficult, her aim seems to be to get kicked out which is a very real possibility. I had got current place to agree to hold her until the new Home but if she really kicks off I don't know if they will. I am patiently explaining that she can't move until either the new Home is complete or a Doctor certifies her fit to fly (her GP has told my Brother she may never will be but him and Mum remain optimistic so I shut up).

Hello everyone

I thought I'd come and join in as I think I am here for the long haul now. I have another thread about the state of my mother's house and whether or not she should be discharged back there, but this no longer seems to be the biggest problem, as she's much iller than anyone thought - she has COPD - and I can't see her being discharged to anything other than a nursing home in the foreseeable future.

We haven't had the closest relationship in the past - I didn't live with her after I was seven - and she's had all sorts of problems with alcohol and depressing, so at some point I think I am going to be screaming with resentment, but for now it's going to be the four hour round trip up and down the motorway each week.

Tender, welcome so-to-speak. My mother was never easy and I had plenty of reasons for turn away with a "your bed you lie on it". FWIW I am glad I did not, as much as anything wanting to break the cycle for my own children. (I don't fully understand but my mother seems to have had a very Victorian childhood which left her quite angry.) Now things have settled we have achieved a new acceptance of each other, and in a lucid moment a few months back she deliberately thanked me for what I had done. Equally touching was my last visit when, after five years of me rattling up and down the motorway without any comment or indeed the offer of a coffee, she suddently worried that it was late, I had a long journey and that she had not offered me anything to eat. Coming to terms with issues from childhood is a great freedom.

Your childhood sounds waaaay worse, and your support for your mother seems generous. But also something that I hope brings you satisfaction.

Will you need to go down every weekend? I found it was not just four hours on the motorway with the risk of delays from roadworks/accidents, but the chores and emotions the other end, that ground me down. I found I always needed a day or two to recover. For me dementia makes things easier. Now things are settled and support in place, I dont need to go down each weekend, and my mother would not remember anyway. She knows she is visited, has local visitors as well, plus obviously she is now living within a community so has lunch with others etc. Will your mother actually want weekly visits or will a daily phone call and perhaps organising a weekly delivery of fresh flowers work as well in terms of her knowing she is not alone.

I don't know what ages your children are but if you are freelance, could you book an out of season holiday cottage or similar for a week or two to break the back of the initial tasks (finding a care home, speaking to lawyer, working out what to do with the house) and then simply travel up for specific things. I try to schedule dentist, check ups and other such appointments in a way that gives me a trip down every month. After four years of day trips, we cracked and bought a small holiday flat. Being able to stay overnight makes a huge difference: not just for me but the chance to complete chores one day, and then have a social visit the next. Plus having a base meant DD did work experience down there last summer, I have been able to build/renew friendships with people there, the ILs are going there for a second time and will take my mum out. I think she has forgotten the row before my wedding! And DH has been happy to spend weekends down there, not least because it is a chance for him to catch some home football games.

A long way of suggesting you pace yourself, and that you try to organise things so there is more in it for you and it is less of a chore.

CMOT - the dreaded phone call. I had a missed call from my mum's care home on Saturday. Actually something trivial, but at some point it won't be. Your dad must be exhausted. No wonder his body is crumbling. Do you think he has reached the point where he accepts he can no longer look after your mother, or is caring for her central to his life.

Welcome TenderButtons. I'd echo that you have to put yourself first, and not keep trekking down the motorway if it is all too much.

Dad is back at home - he had ruptured/torn something 'near his spleen'. Better painkillers, but nothing to be done apparently.

In all truth, I think dad hopes they'll both die before a care decision has to be made. He is afraid of the cost, and about how mum would feel about care (she is anti social at the best of times). However, I know the home near them I'd use, and one near me (literally 5 min walk from the house) and have a full proper emergency plan in mind.

Thanks everyone, and I hear what you are saying. For the moment, she's in a hospital ward with no phone for patients, and they're still trying to work out exactly what's wrong with her, so I'm feeling guilty at only going once a week.

After that, I will try and cut down a bit, but - and I haven't really processed this yet as we were only told yesterday - the consultant said yesterday that her COPD is so bad that he doesn't think she's got much more than a year. But I do hear you and will try and find ways of stopping it being so much of a slog. My stepmother lives about 45 minutes away, and so we can go and stay with her, leave DD there and go and visit and get things done.

Hello all. Some brilliant advice tender from seasoned pros- I really think the hardest part in all this is finding a way to handle/ manage our own feelings and self care- I have a wise older friend who helped me see things from other perspectives and also try prioritise my own needs. Thinking of you all.