You don't need to be an 'investor' to invest in Singletrack: 6 days left: 95% of target - Find out more
Firstly I'm a long-time member who used to be on here as milky1980 but I've forgotten my password and the reset goes to an email address I no longer have access to! I wandered away as all the pop-up issues were doing my head in and in the intervening gap I've had a bit of a shit time. Seeing as others have found it useful to use this place as a way of offloading to complete strangers I've decided to do the same, I'll try and keep it short!
12 months ago my mum was diagnosed as having a large tumour growing in her stomach area, with the concern it could be cancerous. Cue lots of tests and visits to specialists where I had to take lots of time off work to drive her where she needed to go as my dad had just had a knee replacement and mum can't drive very far as she's been bipolar for nearly 30 years and it gives her panic attacks at very short notice. My sister tried to do a few trips but as she was pregnant at the time and has a small family to look after plus work she could only do the odd one or two. It ended up with regular runs from South Wales to Birmingham while they finished off the investigations prior to removing the tumour, each time it could take 6-8 hours as mum is unable to be in a car for long before she needs to get out and reset herself. She had the op to remove the tumour in October last year and it was massive! 10lbs and the surgeon did a brilliant job of getting it out without having to remove the lower intestine and a kidney, we had been all set for her to need colostomy bags for the rest of her life.
The next 3 weeks with her in hospital were hard as she was under heavy sedation, seeing her unable to even take a drink unaided was tough. As a family we tried to get someone up to her every few days, that fell to me to get my dad up there twice a week and my sister managed one every week when she could. Whilst doing this I noticed my dad (who's 80) was getting weaker and losing weight but not drastically so, I put it down to stress and being home alone for the first time in 38 years.
The time came to bring mum home and I was the only one able to do it as dad had a doctor's appointment and my sister was having a visit from the midwife. That journey was tough, stopping at every services it took nearly 5 hours to do 120 miles! We got to my parent's house and the relief was palpable from all of us, the 'adventure' was coming to an end.
Then my dad piped up and said he had some news from the doctor. He had been suffering with small, itchy patches on his legs and round his groin area for a few weeks but kept it quiet as we all had more important things to sort out. He'd had some tests done by the doctor and the result had come back that day: Skin Cancer. A rare, vicious type too. He was to be fast-tracked through the system and get it sorted ASAP as if it got into his new knee that would have to come out. So then followed another few weeks of me driving him to various appointments, clinics etc.
Come February they had a plan for him. The cancer was too far gone for the initially intended laser treatment so it was Chemo for him. The first batch was scheduled for a week after my sister was due to pop so it again fell to me to run him to most of the sessions, mum was driving again by now so she could do the odd one. In the first session it was mentioned that he should avoid contact with babies for the duration of the treatment, we managed to get him to see his new niece (who was born just before his second session of chemo) once for about 20 mins. He didn't see her again until late July.
While all of this had been going on I had been dealing with issues at work and come mid-February it became too much and I ended up spending a night shaking uncontrollably and my heart racing. Called NHS Direct and they got me to hospital, the stress had finally got to me. I was signed off work for 6 weeks, which was horrible as I now had nothing to take my mind off things! Those 6 weeks were a blur, I remember very little of what went on. I must have blocked the bad stuff out as all I can remember is two rides I had with mates during that time. Cue the usual prescription of 'Happy Pills' and stress courses that I've been working through and still am now.
So, fast forward to July and my dad was mid-way through his chemo treatment. I'm back at work and I get a message from my mum to call her. My dad had gone to the hospital for a between-treatments check-up, taking the bus as it's only 6 miles and mum was not up to driving him. Should have all been fine but as he was walking back from the bus stop to home (about a mile) he had sat down on a bench for a rest and couldn't get back up. He had chest pains so he phoned the doctor's surgery who called an ambulance. He'd had a heart attack. A serious one. He ended up in the Heath hospital in Cardiff having emergency heart surgery to put in 3 stents to the right of his heart. This also meant that he would have o stop having chemo as the stress of both would be too much for him. Cue another round of running him to appointments etc.
So that brings me up to August and the latest news. Mum now has an undiagnosed issue with her legs: all the smaller blood vessels are breaking down so they are covered in small blood-blisters and swelled up so she can hardly walk. Her tumour is also suspected to be regrowing. Dad has had the skin cancer flare up again too so is looking at a fresh, stronger chemo treatment. The effects of his heart attack are also showing where he is suffering short-term memory loss and his eyesight is deteriorating.
It's going to be hell for the foreseeable future. And yes, that is the short version! There's also the issue of part of my family putting massive strain on my mum for everything in their lives and my issues at work that are still ongoing but getting better. I could easily have written twice as much.
I'm now off to one of my Stress Control courses, time away from it all for a bit then a quick ride to clear the head.
🙁
Offload as much as you want.
Stay strong dude. Keep riding, take a bit of time for yourself, you can't be much use to anyone without making sure you're ok.
I'm so sorry to hear all that. You're having a tough time and seem to be coping which is good, but there's a point where you need to stand up and say "I need help". Well done for for doing that. I sympathize as we lst my mum to cancer recently - thankfully my Dad's ok, I'm proud of how well he's coped, but I do fear the day when he starts to suffer.
Be as strong as you can, but don't be afraid to say "I need help" and remember that people will help if you let them
Sorry to hear all that. I think you're local to me (?) so if you want a ride let me know.
Just effing horrible. So sorry to hear it
Couple of things - when you look at the whole situation it all appears insurmountable and overwhelming. Look at things in small bits instead and concentrate on what you can do do not dwell on what you cannot alter - far easier to say than do but a very valuable tool .
The other is look after yourself as well. You have already seen what happens when you do not. You need to be in top shape / form to help the rest of the family. Even if that means sometimes saying no or sometimes taking time out for you.
You have my sympathy,
It’s sad, tiring and very frustrating, especially if you don’t have much back up.
We found it helps to break things down in to TATs (Tiny Attainable Tasks) and try not to get drowned in the things you have little control over. When the day to day tasks work out, those small victories (for a while) can be a real boost. It’s a tough gig and you can only do so much.
Good luck and look after yourself.
Sorry to read this, yes well said focus on what you can do not what you cannot. And look after yourself so you can be strong for others.
I m a carer when in UK, it can drive you mad. However i saw an ad in the local paper shop looking for fellow carers to get together for support, just the thought that there were others like me keeps me going. I may even join up next visit.
Also get out and enjoy something you like.
That is a lifetime's worth of crap to have to deal with in one short period. Sounds horrendous, feel for you!
Gosh. That's a lot of horribleness to deal with all at the same time. Others will be along with actual advice so all I will add is good luck to you and your family in dealing with it all. Keep posting updates as it will help in getting it off your chest.
Lost my mum when I was 16 and she was 36 and my dad relatively early too (54). One of the few things I am thankful for is that I never have to see them go downhill or get dementia etc as they get older.
Offload on us as much as you like.
We're down to the outlaws this weekend having had the news that FiL's prostate cancer has spread and there's little they can do now. Which helps me keep my parents constant moaning about non-crises into perspective. I'll miss them when they're not here to do my head in.
Got a potential job in the pipeline that will mean I'll have to give up the part time hours I've done to fit around the kids, right at a time when parents will need the time and support instead. Not sure what to do for the best.
That’s terrible. What a load of complete shit to go through in such a short time.
Its hard watching a parent decline and die, I lost my own dad at 63, so I have some idea of what you are going through. He lived 175 miles away and the logistics made something incredibly hard to deal with, extremely difficult to manage.
You seem to have done everything you can and must be a very dedicated son. That even at this time is something to be proud of.
We live in Birmingham and if you ever use a hospital in Brum again, please feel free to say if you need anything.
Thanks everyone, always nice to have complete strangers give words of encouragement!
Sorry to hear all that. I think you’re local to me (?) so if you want a ride let me know.
Yep, we rode on that semi-failed Cardiff meetup a while back. I tend to ride alone (always have done) and like the clear space but if I need company I'll give you a shout. I have riding mates but they are all over the country and beyond so it tends to be pre-planned meets with them, which I also like. Riding regularly so that is one part of my life that is good right now!
That is a lifetime’s worth of crap to have to deal with in one short period. Sounds horrendous, feel for you!
It's the cream on top of a long-running saga, starting with my mum being sectioned when I was 17 and having to drop out of college and redo the course the next year. Add in that school wasn't a happy place for me before that and it has sort of become the norm for me to have something bad happening most of the time. Just taking each bit as it comes along, like I always have done. The problem is I'm so used to it that I have become very good at seeming happy and normal to others, putting a public face on that even has most of my friends fooled. I've actually had to cut a few friends loose these last few months as their reaction to me not coping has been somewhat un-friend-like to say the least! Some of the family haven't exactly covered themselves in glory either.
The hardest part so far has been telling my parents that seeing them in their current states is heartbreaking and that I've been struggling to visit them, I always feel crap on leaving. To their credit they've told me to do what I want to do on my days off, they'll let me know if there's anything that's needed doing. I still visit as much as I can cope with as they have a garden that needs sorting (it's an overgrown mess) and a dog that really needs the walking they can't give him so that he's not running around like a demented devil trying to expend some energy. Plus they both have a habit of saying they're fine but when you see them in person it's obvious they're not. It's tough.
My parents are both in their 90s and in decline. We're very lucky in that they're still at home and managing with twice-daily visits from carers and a fair number of family living locally who all go in and do their bit. We always make sure we have a proper large family get-together and sit-down dinner with them once a week.
I'm the "go-to-guy" though and tend to be the one who gets the call at all hours about falls and other crap that needs immediate attention.
Two bits of advice I would give to anyone in a similar position:
Don't beat yourself up starting to feel resentful about having to go and sort things out, or even hating dreading not particularly enjoying spending time with them. What you're doing is mourning the people they once were, who have largely gone now.
Don't let it mess your whole life up. Sure, some things can mess a day, a weekend, a month up; that's fair enough. But they don't want you to ruin your life. After all you can do your level best but their life's still going to be shit. Your's doesn't need to be.
From time to time my dad tells medical professionals that he's stopped taking his tablets: he just wants to fade away, doesn't want anything to prolong his life, just wants to be free of discomfort. Each time the medics have given exactly the same answer - don't do that, we can understand and sympathise with what you're doing but you're likely to have a heart attack or stroke and have a long and painful death, causing inconvenience and misery to all your loved ones - you wouldn't want that would you?
The fact that 3 unrelated people have given the same response makes me think that everybody over 85 must be saying the same thing and all medics have been on a course to tell them how to deal with it.
Old age is getting to be progressively worse. They're curing every disease they can so we're just going to sit and rot till we're 100 and spending all our savings on care home fees. When you're young you're told do/not to do things in order to live to a fine old age and when you get there you wish you weren't! Roll on voluntary euthanasia!
My mum died last year after a few years of gradual decline. In her early 90s. Dad died 10 years ago, so early 80s. Latterly in very sheltered housing (which I can recommend - kind of half-way house between care home and sheltered housing). The staff there were determined she would pass away within the comfort of her own 'flat' - and that's what they did, sorted medication, visits and sat with her in the last few days. Blown away by the compassion and care she was shown by folk who were not medic professionals / palliative care.
But I would be visiting - maybe not every day but three times a week (i'm local which helps, no siblings which is good/bad). It did - and I can't deny - get to a burden, and my friends would be horrified that I 'only' visited 3 times/week. I don't think they realize what a drawn out and sad process it is latterly.
Two bits of advice I would give to anyone in a similar position:
Don’t beat yourself up starting to feel resentful about having to go and sort things out, or even hating dreading not particularly enjoying spending time with them. What you’re doing is mourning the people they once were, who have largely gone now.
Don’t let it mess your whole life up. Sure, some things can mess a day, a weekend, a month up; that’s fair enough. But they don’t want you to ruin your life. After all you can do your level best but their life’s still going to be shit. Your’s doesn’t need to be.
wise words
I would add as a part of the first bit that you can only do what you can do - when you have reached the point you can do no more ( and that point is different for everyone) then you have to be content you have done your best. You may wish you could have done more but you couldn't. this could be for practical reasons, emotional ones or physical ones
As an example a very dear friend of mine got MS. Progressed rapidly. I supported her at home a lot. However once her mind went and she went into institutional care i simply could not cope and never saw her again. She died 18months later.
I had done all I could cope with emotionally. I have to be content with that
I feel your pain mate.
Struggling here too.
Both my parents terminally ill.
"Get everyone to the hospital ASAP" call for both in the last week or two.
DNAR discussions for both recently, tough, very tough.
Several times I've written it all out on here but not posted it for fearing it doesn't read well.
I'd echo TJ's words & say let others help, talk if you need.
And ride bikes if your up to it.
Just effing horrible. So sorry to hear it
Couple of things – when you look at the whole situation it all appears insurmountable and overwhelming. Look at things in small bits instead and concentrate on what you can do do not dwell on what you cannot alter – far easier to say than do but a very valuable tool .
The other is look after yourself as well. You have already seen what happens when you do not. You need to be in top shape / form to help the rest of the family. Even if that means sometimes saying no or sometimes taking time out for you.
Oh man that's really tough to read. There's plenty of good hearted folk on here who will listen to whatever you want or need to get off your chest.
Make sure you take the time to look after yourself too.
A possible help might be contacting the Cinnamon Trust who can provide a bit of help for owners who are too ill to look after their pets, but without giving up the pet because of the valuable emotional and mental benefits pets can bring.
Life can be hard. Sometimes it's too hard and can be a relentless **** for quite a while.
Look after yourself and unburden as much as you need to.
Just got back from visiting them on the way back from a ride. They were in good form, taking the piss out of me for getting slightly sunburnt (I was sweating so much the sun-cream just fell off every time I tried to re-apply it!) but they're both struggling still. Dad's not happy about not being able to go out in the garden while it's sunny and mum is being harassed by her cousin to take her to the supermarket to get ice cream for her 4 kids even though she knows mum isn't capable of driving. Facebook messages, texts etc. I've sent said cousin a message that she should pay for a bloody taxi or get a delivery, thankfully I don't normally deal with that side of the family (they're all a bit Jeremy Kyle: multiple kids by different dads, never worked etc.) so I was able to be very blunt and direct but she sent my mum another message straight after asking if she could do Tuesday instead!! My blood was boiling but held it together for my mum's sake.
The good bit was the dog was perfectly happy to just lie there in his little paddling pool to keep cool, too hot for him to go walkies. Just got to get through the next 9 days when the results of mum's tests on her legs should be available.
We've been watching MIL die very slowly over last 15 years. Started with heart attack, then stroke, heart failure etc etc. FIL didn't say anything to us but we had to force him to the docs as he looked unwell. Stage 4 lung cancer, and died a couple of months later. That left us sorting everything for MIL since, about 5 years now. She's in a Nursing home as she has now lost mobility.
Its hard, but you must look after yourself too, as you won't be able to help if ill.
It took alot out of our family, and still does. SIL was round in tears last week over some issues at the home.
Yep, been there. It's shit. (mine was pretty crap as I was busy getting divorced AND going bust at the same time as my Mum of 80 was dying of lung cancer, talk about stress)
I'm still here, (no doubt to the chagrin of some on this forum) but It's still shit.
I think the best thing I did was to keep my Mum quite occupied with humour, asking questions about family that I didn't know much about, & try to lead on to funny stories etc. (depends on how well you know your family maybe)
My dad then had a stroke 2 years after, shit times again. 2 worst years of my life, (apart from the last 2 years while my wife has been recovering from bowel cancer)
You'll be fine, but only if you keep yourself busy on other stuff. Keep biking, having good times/memories with other family/friends.
Can't say much more really....
Old age is getting to be progressively worse. They’re curing every disease they can so we’re just going to sit and rot till we’re 100 and spending all our savings on care home fees. When you’re young you’re told do/not to do things in order to live to a fine old age and when you get there you wish you weren’t! Roll on voluntary euthanasia!
There's a lot that I agree with in your post.
But you're talking from a younger persons perspective, a lot of people in their 80's are perfectly content - your outlook changes, they enjoy pottering around, day drinking and spending time with their family.
If I managed to get an early diagnosis of Alzheimers I'd get really ****ing high and jump out of a plane, naked, with no parachute.
Old age is getting to be progressively worse. They’re curing every disease they can so we’re just going to sit and rot till we’re 100 and spending all our savings on care home fees. When you’re young you’re told do/not to do things in order to live to a fine old age and when you get there you wish you weren’t! Roll on voluntary euthanasia!
I previously worked in an older persons social work team. And old age is something I quickly learnt is very overrated .. certainly not something I want much first hand experience of.
The Nirvana of being able to potter around in the greenhouse - and drink cups of tea & chat with family is the dream. Health, financial and often social network issues make it an impossibility.
Best of luck OP. As others have said - take care of yourself.
Well I'm off work again, couldn't sleep last night as I had nausea, my shoulder muscles were locked rigid (seems to be my symptom of over-stress) and my brain wouldn't shut off despite me being really tired. Got no sleep whatsoever and my brain is really struggling to function. As soon as I'd made the call to work though I was out like a light, strange as I don't find my work stressful and enjoy dealing with the customers!
The last few days have been stressful with mum struggling to get her FireTV stick to work (turns out she'd dropped the remote and it was dead), this made her stressed and argumentative so it was affecting dad who couldn't really escape as he's still not allowed to sit in the sun in the garden for any real length of time. Popped in yesterday on my way back from the Cycle Show (which was disappointingly bad, was hoping to de-stress looking at bike stuff for a few hours...) and the atmosphere was poor, they haven't been keeping up on household stuff (hoovering etc) so I had to do a bit of that for them and arranged for a supermarket delivery for them for today. My cousin has still been pestering my mum to take her shopping, my sister is going to have a word with them about it this time. Going to get out on the bike for an hour, try and relax a bit.
Feel for you,
Am going through similar,
Small steps is my secret,
Worked on both parents till finally they agreed to get a cleaner in , only for 2 hours a week but it means the housework is kept on top of,
Then it was a gardener, so likewise,
Then persuaded them that as I went to the supermarket anyway I could easily get their shopping at the same time
Still a long way to go, Mum had an operation for breast cancer 6 weeks ago and wont slow down to aid recovery, which in turn led to hospital admission last night ☹️ ,
If she doesn’t get fitter then radiotherapy will be delayed and we are in a nasty catch 22 situation I hope doesn’t
.
Not much help I know, but share your concerns if you can and they somehow don’t feel quite as bad
I feel (literally) your pain mate. My teeth have all started aching - I'm clenching them because of all the frustration with my folks. I managed a whole hour to myself yesterday! Woo hoo!
But the good bit is, there are quite a few new trails I found on Cannock chase since last time I was out.
Well things are going in a bad direction.
Went to visit them on Friday and there were a few things that I saw that made me very nervous. Dad is stumbling over a lot, not really aware of where his feet are. He's also repeating himself a lot too. I did notice quite a bit of food in the fridge was well past it's best, had to throw out some of it together with 3 bottles of milk. He did say he was having a bad day when I asked if he was ok, but I'm worried he's just saying that to hide deeper problems. Mum isn't in the best shape either, sleeping a lot and not in the mood to do anything. She's still planning to babysit my niece a lot the next few months as my sister finished her maternity leave this week, but we're both of the opinion she's not up to doing it. Breaking that news to her will be horrible as it's one of the few things she talks about that makes her happy. Really felt like things were taking a downward turn in general, not just a small setback.
I would go visit them more often but A it upsets me every time and takes me a few days to get over it and B they tell me off for checking up on them rather than doing things I want to do, seeing friends etc. Good thing is I'm back at work although I do have 2 week's holiday coming up so will have to try and resist going to them too much. Strangely mum isn't asking about Christmas yet, she's usually planning who will be where so that we all get to see each other by now.
How have others managed to cope with any of this? I can't tell them what to do or be there every day to check up on them!
I hate all of this.
Have you had social services in - Get in touch with their GP and explain how serious things are.
I assume they don't have carers - something needs putting in place to help them. We had carers 4x a day for MIL, even when FIL was alive - was just too much for him on his own.
They might not like it, but it's to ensure they are safe and have been fed. First thing is get a GP out to them both, and go from there.
Its normal to feel as you do - in the latter stages I visited my mum quite a bit (though not as much as my mates, without knowing how it all was, thought I should...) and I felt rubbish while there and not happy when I got back. And that was shortish visits, just across town, when I could keep an eye on things day by day.
The same stuff - milk going, odd requests for things for me to buy for her, just generally going downhill. Still trying to get over that I think.
And latterly she was in very sheltered housing where at least I could rustle up extra care.
I did this back in 2008 and its quite literally a living nightmare - I'd zone out with the stress and come round to the realisation it was real. Waking every day to that same realisation was also hideous.
When mum eventually died (6 month from brain tumour diagnosis to death) it was a blessing. No more suffering.
Then 11 years of having to support my dad later....
Stay strong.
My MiL hired a cleaner to come in 3 days a week for her dad when he was struggling. Except she wasn't really a cleaner more a nurse/home help that was acceptable to him. She'd arrive with shopping, clean, makes sure they were eating properly, cook them lunch leave a few meals in the fridge etc.
Expensive, but it gave peace of mind without upsetting anyone. No idea where you'd find someone like this though... There must be private nurses out there.
There must be private nurses out there.
My mother has Alzheimer's. She now has had to go into a home because her mobility has got too bad for her to continue in her flat. But before things got too that stage we had carers from Home Instead, who were absolutely fantastic. Not cheap, so not an option for everyone.
Alzheimer's is a terrible thing. Mum has now forgotten about her grandchildren, and is getting to the stage where she isn't always sure who her children are. For all practical purposes, the person she was is gone, but there was never a time when we could say goodbye. She used to say that she was grateful to her parents for dying quickly (she was never sentimental), and dementia was the only thing in life I ever knew her to be afraid of. Luckily for her, just about the only thing she is certain about now is that she doesn't suffer from it.
For all practical purposes, the person she was is gone, but there was never a time when we could say goodbye.
That is so very true.
She used to say that she was grateful to her parents for dying quickly
Reading this thread its something that I'm grateful for, had my dad live with us for the last 5yrs of his life to keep an eye on him but he passed away in his sleep just as we started down the route of getting carers in. My heart goes out to anyone dealing with long term illness in their aging parents as I saw what this did to my mum whilst looking after my gran.
Me and my sister looked into getting some sort of home help a few weeks back but my mum is dead set against it. Her bipolar means she's incredibly untrusting of strangers and she craves her own space, as she has no sleep pattern (takes random naps of 3-4 hours at random times) getting someone to work around that is impossible. She's bad enough if we offer to clean for her, her defenses go up and that's the end of the conversation! Dad is also very proud of being able to do things himself, although he is happy to have his wounds dressed three times a week by a nurse but he goes to the local surgery for that.
She used to say that she was grateful to her parents for dying quickly
If only that could happen to all of us, it would make the whole death process so much more bearable. Sadly none of my grandparents managed to. Dad's mum had a severe stroke and spent months in hospital virtually paralysed and unable to speak but was obviously aware of her surroundings and in terrible pain, mentally and physically. Mum's mum had a gradual deterioration resulting in pneumonia before eventually collapsing in agony in our front room. Mum's dad also had a heart attack after a long period of being severely ill but then went into surgery to save him, dying on the operating table the next day. My dad's dad had a painful death too but it was before I was born so I don't know the details.
Why can't we have a service like Dignitas here? Surely that's the humane thing to do, with checks and failsafes obviously. I know if I get to the stage of my life just being constant pain and discomfort I'd want the option of checking out on my terms.
Even getting parents into Nursing Homes has it's pitfalls. MIL is in a lovely one, but they aren't getting her out of bed on time or indeed hoisting to the loo enough - down to staffing - these places don't pay well. MIL had no bed sores at home despite being in bed, or in a chair all day. Now she is in a Nursing home, she has sores - she's bought herself a £2.5k chair, but because she is so immobile, she is in nappies, but they aren't being changed quickly enough - she knows when she needs to loo but there aren't enough staff to hoist her to the commode (takes two staff under H&S) so she ends up wet (and she is large).
It's crap getting old with a knackered body too - her mind is there. We can't believe she is still here, but modern medicine is keeping her going - we were at the 'now't we can do' stage in hospital in February..
It's the stress of going through these 'near death' stuff every year... it's exhausting and so draining on the person affected.
It's not good getting old...
@Fossy. My lad is a learning disability nurse and says he never wants to go in a home. He works in what looks like a lovely place all the staff are doing as much as they can for the clients but there's never enough money/time to do the job he wants. The budget for days out is pitiful (essential for mental stimulus for the learning disabled) which leads to 'warehousing' of the residents. That's the bad.
The Good. The care assistants do a great job of making sure the clients are accompanied and interacted with at all times. This weekend a lady in the home had her 57th birthday. They threw a party for her and staff not due to work turned up to celebrate with her, care assistants did ABBA songs in costume for her. (ABBA are huge for the learning disabled). All the residents had had their hair done, make up for the women and best clothes/shoes put on. It was a humbling experience for me.
Why can’t we have a service like Dignitas here? Surely that’s the humane thing to do, with checks and failsafes obviously. I know if I get to the stage of my life just being constant pain and discomfort I’d want the option of checking out on my terms.
This really is a whole new topic. Needless to say I have very strong views about it and why its not available here. I have family in the Netherlands where physician assisted suicide is available. My brother in laws sisters husband recently availed himself of it. Diagnosis of leukemia, he sorted his affairs out, went to his GP, signed the papers and a week or two later the GP came to his house and gave him a shot. He got to die in peace with his loved ones around him with dignity and at a time of his choosing
I know my parents are scared of dementing or becoming dependent. I have power of attorney in place for them and know their views and I will fight as hard as I can that those views are respected
to me this is a fundamental basic human right. To be able to have a dignified pain free death at a time of your choosing. Once I have retired I am intending to do some campaigning on it.
To the OP - have you got a power of attorney? ( or whatever its called in England / these days)
If not get one as soon as you can - its much easier to get while your parents are of sound mind and it does not come into effect until they are no longer capable of making decisions.
Its well worth looking into
I knew you'd be on the case with that topic tjagain, it is indeed a big can of worms to open up!! Definitely one for another thread and time.
Yes, POA is being discussed currently. My sister is doing the ground work on that front as she's a qualified accountant, she's working my dad to get my mum on side as he is/was a chartered accountant so can help put any issues to bed correctly. We're having to take it slowly though as my mum had a friend who used it to fleece her parents of their substantial wealth and steal it from her brother. She knows neither me or my sister would do that but it still makes her resist the idea.
This weekend has been hell.
My mum has had to go to Dorset with my 15 year old cousin after her dad and brother beat her up last week. It's the latest saga in a dysfunctional family that I've mentioned before, but this is serious. Social services and the police are involved this time and we needed to get my cousin out of town immediately. We have access to a caravan on a park in Dorset so the authorities agreed to my mum taking her there while they sort out a foster family for the end of the week if possible. Cue a late Friday night drive by me (there was no way mum could have done it and dad still can't drive) to the Poole area. i then had to drop them off at a local hotel then drive back to South Wales for work the next day. I then had to drive my mum's car back down there so they had transport for the week then get the train back, which was cancelled between Hereford and Abergavenny so cue a rescue drive by my sister to pick me up. I'll have to get back down there this weekend and drive them back too. My cousin's dad has been sending threatening texts to me, my sister and my mum saying we've kidnapped my cousin but the police and social services know exactly where we are and how to contact us. To make it worse he had a firearms charge court appearance on Tuesday! We don't know what has happened with that as we've all blocked his phone, my mum has had to switch her phone off as she was getting threats from the rest of that branch of the family which means I have no contact with them in Dorset right now. That side of the family is a real-life Jeremy Kyle Show, they all have dysfunctional home lives, drugs, none of them work, kids by multiple fathers etc. My mum's not very well right now as she's changing meds but there was literally no other option at the time so the situation is what it is . My dad's having an intensive round of radiotherapy this week so he's at home but the cousin's father has tried to get in his house once already. The police are aware and have made him sign a voluntary agreement to not visit again but dad's in constant fear of him turning up so the house is fully locked up and he's wary of going out to walk the dog or get the papers. I'm going out of my mind as I can't phone mum and see if she needs any help tomorrow (day off tomorrow so I can go down and back easily in the day) so it's all a bit of a mess right now. Friday is going to be awful as we may have to bring her back to my parent's house which she is adamant she won't do, she ran away from the police on Friday so she could do the same from my mum. The poor girl is really messed up right now, it breaks my heart.
That's the short version.
Jeez, you’re dealing with so much right now. Keep posting on here and engaging. No matter how much you are struggling, you are doing everything in your power to mitigate a bad situation and that’s all that can be asked of you. Keep going, good luck and try to remember to take at least some time to look after yourself.
Small update: had to do an emergency rescue on Thursday. Mum basically collapsed due to the stress of the situation and both me and my sister had to rush down there to bring her home. It took us both nearly 10 minutes to get her in the car due to the amount of pain and discomfort she was in, she's also picked up a nasty chest infection. The GP said she just needs rest and that the normal prescription of antibiotics can't be given as it will react with her other medications. Took over 6 hours to get her home with all the stops for her comfort etc, it was only 110 miles. Such a stressful day it was surreal. Was up for over 24 hrs so missed work on Friday, no way was I going to be functional after all that! The good news is that my cousin looks to have a foster family lined up for the 11th November with the possibility of going sooner. Not guaranteed yet but definitely looking positive. The shock of seeing my mum in such a poor state meant we had no problems bringing her home. Social Services have moved incredibly quickly on it all, they are genuinely shocked at what has been going on behind closed doors. Even we didn't know about a lot of it and I can't go into details but how she's survived it all I don't know, it would have broken me. How someone can be so cruel to their own child is beyond my comprehension.
Hopefully in 10 days or so it'll be back to just worrying about mum and dad. It does mean we will most likely have very little contact with my cousin from that point on as full cut-off and name changes have been discussed for her own safety.
How can the human race be so cruel to itself?
Good luck to you all.
My parents are both mid 80's and live in Ireland. My mum had a brain tumour, I'm guessing around 20 years ago. It was operable but left her with impaired balance and hearing loss. The balance thing sort of stopped her going out and doing much, except eating, she does like a biscuit. Roll on a few years and her back starts to crumble with osteoporosis, so she's in a wheel chair when she goes out, spends most of the day shuffling about between the living room, bathroom and kitchen with her walking frame and has a home help every morning to get her washed and dressed. She's got her special chair in the living room and is now so heavy she barely has the strength to heave herself out of it.
Dad had esophageal cancer about 10 years ago. Lucky boy, he was getting a yearly camera down the throat for a hiatus hernia and it was picked up really early. He's one of the very rare survivors. He's also got osteoporosis of the spine and is more stooped every time I see him. They've both got exercises to do but neither bother. The old man would benefit greatly from doing them as he struggles with mum, more so now that that he can't stand up properly.
Just to add to the cancer thing, little sis (3 years younger) got diagnosed with pancreatic cancer 3 years ago. Caught early and not the usual type she seems to be doing well. She had what's known as the whipple procedure and takes a cocktail of digestive enzymes before every meal. Hopefully her life expectancy will be much longer than normal 5 years. She's now 53.
If you've read this, look after yourself. Weights, stretching and aerobic exercise (in that order) are the key to a healthy old age.
That sounds properly shit piranha, worse then my situation for sure!
It's kind of good, but also not good, to read other's posts of going through similar situations. Makes me feel less alone for some reason. I haven't replied to most of them as it's hard to not just type things objectively, trying to keep emotions out of it really.
Still doesn't make it any easier.
Sorry to hear that you are going through such a tough time.
If you haven't already, check out local hospice provision and contact Macmillan Nurses. Good palliative care makes the world of difference at the end. No one should be in pain (physical or mental) at this time of their lives. Hospices and Macmillan will also offer you support.
Just got off the phone with my dad after his latest radiotherapy session.
The doctor has given him the news that they are no longer winning the fight against the spread of his lesions. It's not bad enough that it'll kill him in a short time but all they can do now is continue to treat him and make him as comfortable as possible. The cancer may decide to slow on its own accord or may speed up but they can't give any timescales. He's as comfortable as he can be and can still move around on his own given a bit of time. He won't be rushed and driving is definitely out from now on.
Strangely it's better knowing compared to the eternal hope they were winning the fight we've had for the last few months.
We had two and 1/2 years of ver6 similar with two parents nursed with cance4 and a host of other things.it seemed like there was no light at the end of the tunnell.
BUT there was , it was a very difficult time but we got through it and life is good again now.
So keep looking after your family in their time of need, and slowly things will get better
Good luck
Well dad's started to accept that his time is nearing it's end so he's started to sort out the dumping ground that is his garage. As in a long double garage that still has remnants of carpet and paint tins from when he bought and renovated the house in 1976!! I gave him a hand and it was ridiculously hard work as he wanted to keep almost everything 'just in case'. Just in case it was worth something. Just in case he suddenly found he had a Fiat 127 again and it needed brake shoes and a fuel filter. You get the idea. Cue 50% of the place then being a huge pile of stuff that is only good for the tip including 5 different cat flaps, a trolley worth of that sticky draught tape (all perishing), 3 boxes of unused 5 1/4" floppy discs and I lost count of the golf balls we unearthed when I got to 50! We also now have 5 drills (3 unopened and one with a price tag from the old hardware store that closed in 1997), two industrial heaters (both never used), 4 car battery chargers and enough special buys from the Aldi Isle Of Dreams to open our own Aldi - routing bits, gloves, heated ice scrapers, etc. It quickly dawned on me we'd need a skip or a day running back and forth to the tip, I reckon 7-8 car loads at minimum. So I left it at that and went home.
2 days later mum phoned me to say he was picking though the pile and most of it was ending back up on the now clear shelves! I wasn't having that so I took counter-measures. I now have a small trailer I picked up from FaceBook Marketplace which I delivered to him yesterday and promptly filled it. I have to book it in with the tip so couldn't do a run straight away so I've put the loaded trailer in the other garage we have down the lane they live on and it's blocked in by my mum's car so he can't just wander in and pick through things. The plan is that every time I empty it I'll then spend time with him getting the next load sorted then hide it in the bottom garage again, rinse and repeat until it's all done. I reckon there's a good tonne of scrap metal in there too, should be able to weigh that in and use the money to wave a carrot at him to do the rest. It doesn't help that he's been getting very indecisive and forgetful over the last few weeks (taking an age to decide if he wants a cup of coffee, leaving things halfway through doing them, losing track of conversations easily etc) so we're having to go gently with him on everything. It's incredibly painful to watch and as I'm only down once a week I'm seeing how quickly he's degenerating, he can out on an act for a while but it doesn't take long to fall off and the real damage become visible. I've got to get him a load of firewood too as his stock is running low, the trailer will be handy for that as he's bought a delivered load the last few years and the delivery was just as much as he paid for the wood! He thinks there's a good amount in the store but it would only last a week of cold weather at most.
I doubt anyone's really interested in all of this but it's therapeutic to type it out and read back.
Keep typing RJ. Not much I can add but man hugs etc.
Keep going RJ, a long hard journey nearly done. You are a good son.
Take an hour here and there entirely for yourself, phone off if need be. Bike, music, retail therapy, just you. You can't keep pouring from an empty jug. Hugs.
Keep on posting - folk may be able to offer advice and a problem shared is a problem halved and all that.
Well that's the first trailer load taken to the tip 🙂
Unfortunately dad's memory is emptying too. He was incredibly forgetful not soon after I arrived, struggling with remembering what was on the TV (F1 3rd practice) and even forgetting my name for a minute! Its blatantly obvious he's getting frustrated with all the pills he's got to take too, it seems to be sucking the life out of him. He's normally one of the most positive people in the family but not today, not for a while now when I think about it. I've got to go back there to drop off the trailer and really not looking forward to it at all.
I really,really hope today is a one-off and he's just really low and tired.
Take a step back and let hospital transport take them to and from appointments. Its free but you have to wait a while.I'm sorry your going through all this. I've had it with my Mum this year with a hip replacement. Shes 87 and I thought she was going to die on the table as she has lots of health problems. She was fine in the end, but we had loads of hospital appointments like 30 and it was horrible.I've no patience at the best of times.
Stay strong,can you get social services to do an assessment for home care? Have a word with the hospital social work team and tell them you cant do everything.
Hospital transport are taking him to the chemo appointments in Cardiff as it's an hour's drive, due to his recent heart attack he gets an ambulance with 2 paramedics without question! We're sharing the trips as a family for the radiotherapy at Abergavenny as it's 10 minutes away. He's also got a nurse from the local surgery 2 or 3 times a week (can't remember) to do his dressings on his legions, that may well go up as the cancer has moved from Stage 2 to Stage 4.
Yesterday I took him to the local surgery for blood tests and I was shocked at how frail he's become in the last week. He really struggled to get in and out of my car where he is usually OK but not any longer. He's also got absolutely no energy and really struggles to keep his train of thought. It was absolutely heartbreaking to see, I struggled to keep it together in front of my mum. I had to though as we had a little issue of getting a car(it doesn't rain, it pours*) for them to sort out. He was determined to help mum out with this as she was adamant she would only get one he could get in and out of comfortably. He managed through that ok but I had to help him deal with the insurance swap. When we got home he slumped on the sofa with the dog and confessed that he wouldn't have coped over the last few weeks without all the help we've (family, friends, neighbours, medical staff) all given him. He can cope with the tiredness, the pain and the frustration of it all, it's the feeling of helplessness he hates. It's absolutely horrible to see him go from someone who was still working at 77, walking to the shops every day for the papers and driving to cancer-ridden, confused, no energy and virtually reliant on others in 3 years. I dread every time my phone rings now, especially in the mornings.
I hate this.
* wanted to put 'It can't rain all the time' but don't know if anyone would get the reference!
Oh and I may not reply to the comments on this thread but I am reading them and they are a great source of helping me keep it all together. I actually read it back to my sister and mum at times too, they think it's weird that a bunch of total strangers share stuff like this but then they think I'm mad for going riding in all weathers and enjoying it. They did like the picolax thread though!
not trying to hijack your post in any way but having an almost identical situation with my Dad, even down to the garages!! he was self employed tradesman and vintage motorcycle enthusiast for the past 60 years and was still working every day until August, now he almost never leaves the his seat all day long. Chemo will run its course and then, well its just a matter of time.
Sadly i cant offer much in the way of support other than you and your family seem to be doing a great job in supporting your Dad and each other.
It doesnt make things better but there is support out there including financial support that can help with general costs, we were advised of this through Marie Curie who helped with the process.
To be entirely honest, im shitting myself for the day after he has gone, one of only two people in the world who I have known all of my life and the thought of him not being there when i phone them for the first time, somebody who would always give advice without there being any agenda. The situation is a massive pile of steaming shite and no mistake.
My work have been pretty good and have let me work compressed hours so I now only work four days a week and this gives me another day just to be able to spend time with my folks and im pretty sure after all things take their course Im never going back to working for "the man" five days. Thankfully I live pretty close to them and manage to pop in every day, even for half an hour or so, mainly to see them but partly because Im being selfish and not wanting to see a step change in him, though I know its happening. I never used to pay much attention to the often used phrase of life being too short, but this has given me a reawakening and kick up the arse for sure and definitely going to be taking a slightly different view on things from now on.
I dont know you but it sounds like you are doing everything you can and supporting everyone brilliantly.
Hijack away, more than happy for people to share advice and experiences. If it can help more than one person it's doing it's job.
I dont know you but it sounds like you are doing everything you can and supporting everyone brilliantly.
I'm doing everything I can but I'm struggling to balance that with having time for myself. I also only work 4 days but the added costs of everything mean I'm having to pick up the odd extra shift just to ease the burden. My car's due a service and MOT right now and if it wasn't for those extra shifts I'd be hammering the credit card! The biggest hurdle right now is my brother-in-law who is getting grumpy about my sister doing anything, he seems to think that as I have no kids or partner right now I can drop everything all the time. They have 2 young kids but live 15 mins away, when my sister pops in with either of the kids for even 20 mins and a cuppa it makes my parent's day. Contrast that with me having an hour's drive or more (depending on traffic) then spending most of the day there doing jobs for them etc. His family see the kids all the time as they pretty much all live on the same estate, it upsets my mum occasionally she doesn't see her grandkids more than once a week most of the time.
Little things can mean so much.
Small bit of bad news today.
Dad's had the results of last week's blood test and they're not happy about his liver function levels so his next round of chemo is on hold for a week. They were hoping to get the next treatment done and give him a week or so to recover so he could enjoy Christmas relatively pain-free but that doesn't look like it will happen now. If his second blood test comes back OK next week he'll be having chemo on the 19th with the second dose on the 23rd. If he's anything like he has been over the last few treatments that means he won't really be up to much for Christmas or boxing day, it's been taking him 4-5 days to get over each treatment. This christmas was going to be a relatively sombre one anyway but it may have to be a very quiet one now.
Top work RJ and everyone else stepping up at your parents' time of need.
RJ i had to laugh at your description of garage tidying. My wife and i spent a whole summer fighting with my dad over a whole house full of crap as he'd agreed to move after mum died. Turned out he'd been a bit 'Mr Trebus' and hoarded everything, carrier bags, margarine tubs etc. amongst the detritus of many dead relatives estates.
We quickly concluded that dump was the only option. But heartbreaking as we have surely dumped family heirlooms and stuff. But the need for sanity prevails.
Wile i know its easy to say that you have to look out for yourself the reality can sometimes be harder to see that from close up. Thankfully my sister also lives close by and between us one of us goes in every day, different lives between us mean that im there most days, even for an hour or so, but if there are days I cant get there then she will go. I can understand your thoughts on the fact that you seem to be doing more and travelling further. Easy to say but would it be possible for you, your sister and BiL to have a chat about things?
We had to recently be blunt with our Mum due to her wanting to do everything, her sister also got recently admitted to a care home due to dementia. Essentially my sister told our Mum that it was going to be bad enough loosing one parent but if she carried on the way she was going then we would likely end yup loosing both at the same time. it seemed to help, for a while but we might need to repeat the discussion. Similarly for you, if you keep on trying to do so much, then it might also not be good for your health.
Looks like the treatment my Dad has been receiving is going to come to an end this week, never a good time for things like that but bit of a kick to the nutz at this time as well. He got told the big bad news on his birthday and to have this as a Christmas gift seems a really cruel blow for him.
With regards to finances, have you explored all the options? There is funding available, from the State and some charities. Sounds like from the time you are spending there you might be eligible for carers allowance, £60 ish per week, even if it covers the fuel?
I know it can sometimes be hard, but Marie Curie and other similar charities or organisations have lots of great support available, some direct and some indirect, even getting to speak to somebody who has an understanding of what might be happening. Similarly dropping into this place from time to time might help and as has been shown on so many posts when people need a little help then its amazing the support that can be available.
I'm sending my support too.
We are in a similar boat, my dad has terminal lung cancer and my mum's health is awful with 4 co-morbidities (diabetes, heart failure, kidney failure and chronic pancreatitis) .
He's just postponed his chemo for a week so he can come to ours at Christmas (to be fair the last round did nothing, and the radical surgery to give him a short while longer has probably taken more months out of him in recovery than he'll gain at the other end).
Just make sure to take care of yourself so you have the energy to help when needed.
Just posting to say good luck to everyone who has to look after parents/family in a similar situation to mine, this time of year should be one of joy and fun not a reminder of how fragile life is.
I have had a bit of good news though, my line boss has given me an extra day off this week as a carer day meaning I get a full day's pay and I'm under instruction to use it to unwind by myself. My main boss doesn't know about it so I'll feel a bit naughty while pedalling away. That means getting paid to ride my bike! It's the only day I'll have really between now and New Year as Christmas stuff will fill the rest up easily. One day at a time as they say.
That means getting paid to ride my bike!
Well deserved, go and have fun just don't spanner yourself doing so!
Seeing as it's a new year thought it was time to update this a bit and round off the hell that 2019 has been.
Since my last update dad has had another round of chemo just before christmas day but they went easy on him so he could at least enjoy some of the festivities. It didn't really work as he was rather weak up until the 29th, struggled to eat and didn't really seem with it most of the time. He was very appreciative of all his presents though as we all went for stuff to make his days easier to get through, he seemed very awe-struck that we all have rallied round on this front. It was only stuff like a 2ltr water bottle with times on the side so he can make sure he drinks enough every day, that kind of thing. The only downside to the holidays was my uncle who was being the usual gammony, argumentative idiot he always is, sad to say I did shoot him down at one point when he was obviously upsetting my mum a bit with his views! The whole time was very subdued on the whole, no real celebrations to talk of for christmas, new year or my birthday. There just didn't seem to be anything to celebrate.
The situation with my cousin is getting stable at least, that's all I can say about that as there is ongoing legal stuff with regards to that side of the family right now. I can sum it up in a drug dealing court date, firearms offences, a child abuse case and a benefit fraud investigation, more to be announced too. Apart from dealing with my cousin, who is still living with my parents, I've washed my hands of all of that.
The bad news is that my situation at work has got a bit difficult. The issue that put me over the edge and on the happy pills last February is still unresolved. A colleague was targeting me for bullying and I was finding it very hard to avoid him or get any concrete evidence of it. After I came back to work he calmed the bullying down but moved on to another colleague who also put in official complaints. We joined forces to prove a pattern of behaviour but the company have said there's no case to answer! The bullying colleague then went on the sick with 'stress' for 3 weeks during our busiest time and is now back. He's been bad mouthing me and my colleague to customers and now thinks he's basically untouchable. With everything else going on I went to one of my bosses and told him that I was at a worse state of mind right now than I was back in February and that if I had to I'd hand my notice in at the end of January if things didn't improve on my end during that time. To add to this I've got an issue where we've had new equipment supplied in November and an old shoulder injury from falling off my bike means it's very painful for me to use it. They've kept back one of the old ones for me temporarily and I'll need to have an assessment as to if there's any way I can use the new machine safely or not. If I cannot use it safely then it's looking like I'll be moved on. The trouble is we have an 'Extreme Sports' clause in our contract and that would stop me getting a redundancy payoff (we have very favourable figures in that scenario) so my options would be limited. They know the shoulder injury was due to mountain biking so there's nowhere to hide on that front. My boss gave me today off (New Year's Day) as we had too many people rostered in anyway and we're going to look at the whole picture sometime next week. In all honesty I wouldn't hand my notice in as I need the money to look after my parents, it's just the way I feel right now and my boss knows this but it's a sign I'm taking to say I need to sort things out before they come to a head again.
I really want 2020 to be a better year with at least some highlights, hopefully that will happen but it's hard to look that far ahead right now. The only good bit of 2019 was my niece arriving, I want more than that for the first year of the new decade.
I lost both my Mum & Dad, 2 weeks apart, back in Aug-Sep.
Mum had terminal cancer but mercifully her poorly heart eased her to a peaceful passing long before the cancer had a chance. We were all with her, holding her as she went.
Dad had gone into hospital back in July, a number of issues but not helped by his poor vascular system. He had a fall in hospital, which set him back. Then came sepsis. He slipped away early on a Sunday morning. His last words being that he was off to the pub.
Safe to say I don’t mourn the end of 2019. Xmas day was difficult, but a tearsoaked Facebook post captured all I wanted to say, & the mood lifted after that.
Take it one day at a time is my advice.
Bite off small chunks & deal with it one chunk at a time.
Hey Reluctant Jumper,
How are things going? hopefully work is getting a bit better at least.
@takisawa2 sorry to read that. Quite familiar though; Dad was in and out of hossie the last few months with terminal prostate cancer, sepsis, etc. He got home for a bit but after a couple of falls went back in just before Xmas, we arrived from Spain the 28th and he died on NYE. He hadn't wanted anyone to visit while he was so ill but we took the grandkids up to see him a couple of days before he died and glad we did. It was devastating to see him break down when they walked in (6&7y/o) but the subsequent half hour they spent together will be treasured, especially as he only saw my son a couple of times a year.
Trying now to process a lot of anger - prostate cancer doesn't kill you, they said. I was shocked at how aggressive it was in the last 6 months. Going through his 2019 calendar we only found three weeks where there were no appointments, it was relentless. We came over for 3 weeks in summer and although he was really ill he did dig in and have a great time with the kids while we were all together.
Funeral on Weds, staying in his house alone isn't much fun while we sort out the paperwork.
Not great but not bad is the answer @turin.
My cousin is now back living with her parents (her choice) and this has caused that side of the family to disassociate themselves from my mum. This has hit her very hard as she's helped them all through some very difficult situations over the years, literally the only one from her side still talking to her is her brother. My cousin's mum is spreading very damaging lies about her, this is getting mum down massively so we're having to manage that right now.
Dad is settling into the routine of doctor's appointments, blood tests, chemo sessions and rest. Reluctantly it has to be said but he is starting to adjust. Took him to one of the appointments a week ago and he was rather down so we took the scenic route home. He rather enjoyed that but you could see he was worried it was one of the last times he'd see that view, one he has seen every year of his entire life. Very sobering to see.
I'm kind of trying to make a good start to 2020, got a few miles under my belt already but I've picked up a bit of the flu bug that's going round work so taking it relatively easy so as not to get the full one. I tend to shrug off bugs quite easily so hopefully it'll just be a cold and I can get on with things. Work is a bit difficult as the bully I mentioned previously is back to his old tricks towards me, my boss is aware but as always you need lots of evidence and I can't get anything to stick. I have a horrible feeling that this will not go away anytime soon so just trying to not let it get to me and just keep a diary of it for future reference. I've set myself a target for my biking and solely focusing on attaining that right now. I was hoping to buy a new hardtail frame this spring and build a new bike up specifically for this but that is on the back burner now, don't really feel in the mood to splash out on expensive luxuries. Mentally I'm down at a low a point as I was back last February when I was signed off with stress and anxiety, the difference this time though is that I can see the path ahead so am struggling, but managing, to keep things going on the right direction. Hopefully this will continue but I have a few close friends and my sister looking out for me so that safety net is there.
One good bit of news is that the local health board have now reviewed our situation and are now going to pay for the nursing care my dad is getting 3 days a week. Me and my sister have been paying for this for the last 6 months and our savings are low enough now (ie gone) that, together with my mum's savings all going on a replacement car after hers died just before christmas, that we now qualify for full cost cover. This is in no small part to a family friend pulling a few favours and getting out situation on front of the right people, no queue jumping just making key people aware. It's a massive weight off our shoulders, especially mine as work is going through a massive cost saving exercise so any overtime is not available. I know it's poor form to rely on overtime to make the household budget balance but with the extra cost of the nursing home visits and all the extra trvel to and from mum and dad I've been desperate for every penny, that will no longer be the case from March onwards.
So, like I said at the beginning: Not great but not bad is the answer.
Just posting an update so that there's no gaps for when/if I look back at this.
Dad's had to forego a round of chemo as the doctor wasn't happy he was well enough to take it. He didn't take the news very well. He thought that he was doing well at losing a bit of weight, watching what he was eating etc but the doc said he was losing it due to the cancer and he needs to eat more! It's upset dad a lot and pushed him back quite hard. He's also struggling to hold his train of though more now. His brain is still working well but the lack of energy is causing him to stumble on longer conversations. It's so heartbreaking to witness that I'm sorry to say that I have been avoiding going there to see them both. It also doesn't help that mum is coping by smoking a lot more than usual and the smoke is affecting my asthma. I had a nasty cough and sore throat for a few days after my last visit which was nearly 2 weeks ago! Add this on to the work issue with my bully and it means that my anxiety is getting rather hard to control. All in all not a good time right now.
Hoping I'll get there to see them and watch the first Wales game with them on Saturday, determined to spend decent time with dad as much as possible.
It’s so heartbreaking to witness that I’m sorry to say that I have been avoiding going there to see them both.
This is what I meant about everyone has limits to what they can do and you have to be content with that. #Don't beat yourself up over it. You have done what you can and have reached your limit. You are no good to them at all if you end up upset / resentful / broken. so keep within your limits when yo can do some good for them
In support of what TJ said, be careful what you do for him/family that might **** you up.
When my dad had a stroke and they turned off his life support machine I elected t stay with him those 45 minutes or so whilst he died. How hard could it be....
Prior to flipping the switch, he was completely stationary and placid. But when the ventilator stopped he was making all sorts of noises and movements (to put it mildly). This lasted for ages and ages. It was as if he was fighting and fighting for life, just at the point where we had taken it away from him. After 2 days in a coma (or whatever it was) he was now reacting far more than he had all that time.
My sister and mum came in every now and again, but couldn't watch. For some reason I stayed there like a **** out of some sense of duty/solidarity, and watched his body move, shake and these horrible wheezing breaths.
It really ****ed me over. Properly. I felt like such a basturd watching him fight to stay alive after we had betrayed him and turned him off.
I've already told my mum that if she goes through the same then she's on her own. And if I have any say in it there is no way I will let my kids suffer the same.
YMMV
What others are saying makes sense about looking after yourself is so true and its probably better to try to focus on quality time like you are doing so fingers crossed you get the victory in the rugby 🙂
Do you know if your Dad/folks are getting all the help they are able to? Going through a not too dissimilar scenario here and while I have nothing but positive things to say about the NHS we have found that the different parts dont always talk to each other and the result is that when they do more support has been available, some financial, some practical and some emotional all of which have been very gratefully received.
We have recently had the hospice option chat and while we now know what is desired, we hadnt really dared go there before, a change in attending GP has opened up some discussions and help that we werent aware of, including respite care/support for my Mum from the hospice. So if there is somewhere like that close by they might be able to help on various subjects and not just the ones you might expect. It has helped us so just thought Id mention it.
Yeah I am aware I'm close to my limit. My anxiety has been rearing it's ugly head again so taking that as a warning to think about me for a bit. Planned to ride both trails at Brechfa today, had to force myself out of bed and get ready. Was riding well but every time I came to a fast or exposed bit all I could think of was who would look after them if I binned it. Wasn't enjoying it so only did the Gorlech, annoying as my favourite bits of the place are on the Raven trail! Got tomorrow off too so will get out then and see if a decent night's sleep helps.
@thegeneralist - went through similar with my gran, she went from an active social butterfly to just lying there after a bad stroke. Went to visit her every few days with my dad and we were there when she went, absolutely horrible to see in person so you have my thoughts on dealing with that and making sure your kids don't go through it if possible.
@turin - there's limited help where they live as it's reasonably rural and Powys County Council's services are all at the other end of the county 80-odd miles away. I'm constantly looking at options available to us so we're getting help where we can but it's nowhere near the level I could get if dad lived with me in Cardiff. One of the downsides of living surrounded by mountains and fields I suppose. We did get a free mobility scooter from his Chartered Accountancy body Benevolent Fund which has been a godsend as it means he's not stuck in the house if he can't manage the walk up the hill they live at the bottom and of. If he didn't have it I'd be buying him one.
Every little helps as they say.
@thegeneralist i did the same with my mum, but had to give up after 2 days and go home (as she wouldn't!). Bizarre isn't it. Me and my sister looked at each other at one point, and a pillow nearby, and without having to speak knew that we we're both thinking it would be more humane and dignified to finish it. I'm sure some people must.
Time to update this, purely for my own records if nothing else.
The last week has been horrible. It truly has. Mum has been going downhill for a bit recently and it has ended up with her in hospital. She was getting a few water blisters appearing all over her which have been rupturing into small open wounds. The docs gave her a load of cream and bandages to control them but it wasn't enough. It possibly would have been but last weekend their house was caught up in the flooding in Crickhowell. Only the kitchen, utility room and downstairs bathroom were submerged but it's meant the house was full of fumes from the dirty water and something got into her. She is now in hospital and is really weak with the medics determined she's not to go home until it is a clean environment for her. I haven't been able to get to see her due to road closures and work but hopefully I can see her tomorrow, provided the ward allows visitors as they have a bout of D&V running around right now. Dad is still at home as he refuses to leave but without any central heating (there's a wood burner in the lounge), cooking facilities or easy access to sanitary facilities he can only be struggling. I haven't been able to get there to see him as the roads have been closed plus I've had to work but me and my sister are going there tomorrow and see the situation first hand. I have a feeling we're going to have to make the difficult decision of persuading him to essentially abandon the house until it is repaired, that is going to be really hard to do. The big worry is the germs in the flooded kitchen and bathroom will spread to the rest of the house and get him too. He did mention on the phone that the insurers have mentioned alternative accommodation but he insists he can manage fine using the rest of the house. The issue is they have also said not to clean or remove any damaged property until the assessor has been. If we could just take photos of the damage and then clean it to a shell we would but I don't think that's an option without detrimentally affecting any claim payout. The last two years dealing with them both being ill has wiped out all of my savings, most of my sister's and the family pot is dwindling fast so we need to make sure the insurance takes care of re-instating the house to a liveable standard.
As for me, I know I'm not coping well. I have very little reserve capacity to fall on right now but there is no way I can take more than an hour or so for myself until the fallout from the flooding is taken care of. It will most likely mean I'll crash when it's all over but I can deal with that when it happens, more important things to see to first.
Just got to see what tomorrow brings now.
Hi RJ,
sounds like a tough period just now, in addition to everything else that's happening. I feel for you with it all.
Can imagine the wrench for your Dad and why he might be focused on trying to stay where he is, hopefully the chat goes okay tomorrow. Having never had to deal with insurance companies for things like this I hope they have a human side and are able to help you out with accelerating your claim under the circumstances, if you can let them know whats going on.
Is there somebody you have that you are able to get support from, even an ear to listen to?
Not really as all my friends are spread out around the country, the close ones are all tied up with kids seeing as it's half term here. I'll worry about all that after the next few days, more pressing matters to deal with first.
The assessor is due today so me and my sister will be there to help support dad. If we can I'm going to push for alternative accommodation as just not having cooking facilities and heating is too much for them to cope with right now. Hopefully that will push the insurers along with repairs so everything will be sorted faster.