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Brads – a peaceful dignified pain free death with your loved ones around you is the best we can all hope for at the end of our days. Condolences
Seconded.
I am both sorry and pleased to read this. You did a hell of a lot for him, I hope you realise that. Take care of yourself.
Brads...condolences to you .. TJ is so right,and in years to come you will find comfort in knowing that you were there for your Dad when he needed you..I know I do with mine.
My MIL transferred to a hospice today. I took my kids to see her to say goodbye. It's only been five weeks since her first symptoms and she was diagnosed with terminal peritoneal cancer last week. It can **** right off.
Brads. I can’t think of a better end to have than being with the people that love you. Thinking of you and yours.
littlesthobo. Such a massive shock, I think many of us who have lost someone instantly know how you could be feeling. Take care my thoughts are with you.
Many thanks all.
And good luck to anyone else going through this.
You have my thoughts and sympathy’s. It’s not easy.
Thanks to the last few posts on this thread I haven't kept it up-to-date as reading them was triggering some deep-down fears rather too strongly for my liking. But I actually have some good news to report so it's time to get this moving again.
Dad has been given the all-clear. He's not completely out of the woods as the legions do just suddenly appear but he's had over the prescribed time with no new ones appearing so he's officially beaten it for now.
Now the bad news. The stress of getting to this stage has taken it's toll on the rest of him. He's really struggling mobility-wise, especially for any period of time, to the point where he is worried about the dog not getting his walks. He struggles to stand for more than a few minutes and is taking a lot of little 'naps' throughout the day. His ability to follow a conversation has also taken a big hit, which was a big issue yesterday. We were all there meeting up for my sister's birthday, so four adults and two young kids. Dad really couldn't follow what was going on at all and excused himself to go sit down for a while. That prompted mum to say that he does this even when it's just them there as he needs to sit down and process things after more than a few minutes of talking, he just doesn't seem to be able to follow things of any particular complexity any more. He's even struggling with the Sky TV, before he could navigate the menu pretty well but now he's really struggling. He's also driving mum mad by putting random stuff in completely random places all the time and has become obsessed with a few things like putting mugs in the dishwasher. I was there for 4 hours yesterday and got through 3 mugs as each time I finished one drink it would disappear into the dishwasher, once even before I'd finished the drink! It's really driving mum nuts. She also mentioned that they are arguing a lot recently, something they very rarely do. It can be over anything, from what day the bins are meant to be out to where something is stored. I've noticed this all happening over the last few weeks but my sister hasn't been to visit for a month (due to the kids isolating due to Covid scares at school) and she was a bit shocked at how quickly things have deteriorated. I don't know what I can do to help other than just be there when needed and try not to let it get to me.
The downside of all of this is it's affecting mum quite badly too. She's really struggling to keep her energy levels up and is struggling to find any motivation to do anything. It's not at a critical stage yet, like them running out of food due to not going shopping, but it's definitely something to be aware of and monitor closely in the run-up to winter.
So the usual up/down/up/down scenario still. I'm really worried about this winter though. If there is another lockdown or things get beyond critical for the NHS then I fear the current smaller issues could become out of control very quickly. Nothing I can really do about it though so I'm trying not to worry about it too much but it's difficult.
. She also mentioned that they are arguing a lot recently, something they very rarely do. It can be over anything, from what day the bins are meant to be out to where something is stored
A common and difficult issue when someones facilities are diminishing. Your dad is fighting to retain his identity and struggling to do so. your mum is getting frustrated at his diminished ability. But if she takes "jobs" off him that reduces his self esteem further
difficult tho it is its often easier if your mum simply does not argue with him about trivia - either let it go or redo whatever task it was later. Everytime she tells him he has done something wrong it reduces his self esteem
Letting him struggle hard tho it is for others is perhaps best for him. Its awful for him to be infantalised and to be told he is incapable even if he is.
tough situation but perhaps see if yo can get your mum to pick and choose her battles better - ignore the trivia even if its annoying. Does it really matter if the cereal is in the wrong cupboard?
i
She doesn't stop him doing things like putting the shopping away, that's just asking for trouble! What she'll do is let him finish doing what he does, wait until he's gone back to the lounge to sit down then go around the cupboards, fridge and freezer and put things right. Even doing that he gets annoyed. It's not big things, just lots of little things that add up over time. I have suggested to mum that I take her away for a few days to release some of the pressure but she's petrified that dad wouldn't be able to cope on his own and she does have a point.
It's really tough to watch and I don't really know how to deal with it and the issues it's causing.
He is annoyed because in his mind she is treating him like a child and pointing out he can do nothing right
Its a really difficult one to deal with - he is "raging against the dying of the light" and your mother without intending to be hurtful reminds him of his failing
To walk the line between letting him be his own person and infantalising him is tricky
Can she sort the stuff out more subtly? leave it for a day or two? I get its really frustrating for her but its more so for him to be constantly reminded he is not the capable man he once was sometimes she has to leave him to sink or swim hard tho that is
Not an easy situation but explaining to mum why he is reacting like he does may help her be less annoyed and more understanding but I have to say in your mums shoes it would drive me crackers
Can you get each of them out of the house for a day? Bring carers in one day a week so she can get out more?
Can she sort the stuff out more subtly? leave it for a day or two?
Not when he's putting frozen stuff in cupboards and fresh stuff in the freezer, no. He's bad enough for ignoring Use By dates on food as it is without adding on stuff that's been stored incorrectly! If you read back in the thread from when they were flooded out nearly two years ago you'll find that I wrote about him trying to save cans of food that were not only submerged in filthy river water but also out of date. He was born in 1939 so the whole rationing mentality and not wasting anything is incredibly strong in him.
Bring carers in one day a week so she can get out more?
Mum has her own issues to deal with, bipolar being the main one but with the added complication of rather severe insomnia and issues due to her having her thyroid killed (radioactive therapy) and relying on medication. She rarely leaves the house for anything, mainly shopping and doctor/hospital appointments. She is very wary of strangers coming into the house and has been for well over a decade so getting her out and carers in is nigh on impossible. It's really hard to explain on here but there is a certain way that you have to approach issues that me and my sister have grown up with and it's really not a quick process at all. Add all of that on to the usual reluctance for elderly people to accept help in general and it is incredibly difficult to make progress on anything. I did get a lot accomplished last winter though as I was unemployed and there 2-3 times a week, that isn't possible now so it's back to the glacial changes that hamper a lot of things.
This is all why I'm petrified of getting old myself and fully support the drive for assisted deaths.
I'm out of ideas then really
any contact with the community psychiatric nurses - they often have good coping strategies for this sort of issue and may be able to offer support
the only other thing to remember is that you do the best you can - and that limit is different for everyone - and when you reach your limit then you have to learn to be content that you have done what you can and can do no more. don't beat yourself up with guilt " I should do more" You cannot - you have reached your limit be that the emotional limit or physical
I'm well past my limit, have been for a good few months. As for the healthcare support around them, it's beyond breaking point too. The staff are trying their best that they can but they're spread so thinly right now it can be a long wait for even urgent visits and appointments. Recent NHS restructuring in their area of Wales has meant that care now falls to the Powys Area teams rather than the South Wales one, so from the one with the best staffing levels and resources to the worst. That's not the fault of Powys, more that it's a very rural county and has no major hospital or support system. It's been a hammer-blow to lose the support network we had built up over the last few years at the worst possible time.
I’m well past my limit, have been for a good few months.
Back off a bit then before you break yourself? You are no help at all to them broken and resentful. sometimes you have to let folk sink to save yourself. Harsh tho that sounds
One other thing to just get ahead of is shredding bills etc - my parents have always been quite careful to shred anything with any personal details on (which is fine) but I now have copies of key documents that need keeping and shouldn't be shredded...
Is there an alheimers support group for carers that might support your mum @reluctantjumper ?
Back off a bit then before you break yourself?
Don't really have that choice. It's not just looking after them, my whole life has been thrown into chaos since the first lockdown. I'm not in steady work (agency driver) which means planning anything financial is tough, especially as I don't know whether I have work or not until a few days before the next week, I haven't had a break since early May and I'm finding very little time to do stuff that I want to do. My riding has plummeted in terms of number of rides and my fitness had all but gone. I only see mum and dad once a week and the whole time is spent catching up on chores for them and giving the dog a much-needed walk or two. My sister helps out where she can but she has a full-time job and two kids to worry about so I can't leave too much for her to pick up. If I didn't do some of the things I do now then their situation would quickly go downhill, even missing one weekly visit is enough.
One other thing to just get ahead of is shredding bills etc – my parents have always been quite careful to shred anything with any personal details on (which is fine) but I now have copies of key documents that need keeping and shouldn’t be shredded…
Dad files everything rather than shred so I don't have that to worry about. As an ex-accountant he keeps all bills and statements going back 6 years as habit! Getting him to bin stuff is actually the problem.
As for support groups we've tried that before but mum's bipolar gets in the way (finds it hard to talk to strangers) and most of them are so busy they don't have the resources to take on any more cases.
Just phoned the hospital to tell them that we don’t want my dad (recently broken hip, fairly immobile,early dementia) released to home so it will be a home of some sort. I keep justifying it in my head and it is by far the safest solution for both him and my mum, I still feel crap about it. In-laws falling apart as well, wife’s granny just turned 101 but broke her hip last week, not a good scenario. It is all just a dark cloud that has been constantly pushing down on me for about the last year and with little sign of respite. 2021 can seriously go and do one!
That's one of the scenarios I'm dreading myself @kilo, an incredibly tough one to take. Good luck that you find a decent home for them, something that will be tough right mow.
A little update after the festive period.
Dad's visibly slowing down now. He struggles to walk anywhere without shuffling his feet which means he's also susceptible to tripping over small objects and the edge of rugs. The poor dog is getting the brunt of this as dad still thinks he can lift his legs over him but now just gently kicks him in the head! The dog is learning to move out of the way though so it's all relatively safe on that front. The worrying thing is the he has twice now come back from walking the dog with mud and dirt on him from where he has fallen over. He insists it's from slipping on mud when the dog does a no2 on some grass and he has to go fetch it but I know from me walking the dog that he has his particular places where he 'goes' and they're almost all on hard ground. Mum thinks it's happened more times than he's admitted to though as a few times he has gone straight up to his room when returning and then mysteriously offered to do some laundry a few hours later, his routine is to give the dog a treat on getting back (which are kept in the utility room at the back of the kitchen) and he never does the laundry normally to the point he doesn't even know what programme to use for anything. It's all rather worrying. He's also visibly struggling to follow conversations, even on mundane stuff. The major worry though is that he seems to spend 90% of his day asleep in his chair in front of the TV, even when he's watching one of his favourite shows. He's also constantly complaining of being tired. I know this is worrying mum a lot as it means he's struggling to keep his fluid intake up (which he has to do thanks to after-effects of the chemo) and this results in him becoming irritable. Hard to know what to do about any of that barring treating him like a child and walking him up to have an hourly drink!
The major worrying thing though is that he has on a few occasions taken multiple seconds to recognise it's me when I arrive. Not just notice I'm there but staring at me and you can see the cogs slowly turning before he acknowledges I'm there. My sister has said the same thing too but only if she turns up without the kids, if they're in tow then they both make so much noise getting through the front door that it's hard to see if he is slow to react. We're both in agreement that it needs to be kept an eye on as we both saw the same thing in my Gran (his mum) in her last weeks before she had a series of strokes leading to her passing away.
All of the above is wearing mum down. Not badly but you can see the strain is showing. It's very hard right now for me or my sister to visit more than once a week right now so we're in the situation where it's easy for us to miss things or them to hide things when we visit. Doesn't help that I'm still stuck on the Agency treadmill and without a permanent job so unable to reliably plan visits or make myself available for taking either of them to appointments if needed. Tough times ahead I fear. But then I've thought that for the last 2 years!
Finally I can update this thread with a decent dose of good news.
Firstly dad has taken another positive step forward in terms of coming to terms with him becoming less able to do things. Not just the stuff he can no longer physically do but also the mental tasks, he's now much more readily asking for help either when I'm there or he'll now call me and ask when I'm next coming over and can I do XYZ for him. It started with him having to replace his mattress after an accident one night and him being unable to remove the old one, unfortunately after he had tried and got it stuck so he couldn't go to bed. Cue a phone call to me and a late night run down to sort it out! It was while doing this that he finally admitted he was getting frustrated at how quickly his mobility and dexterity is deteriorating, he also said he felt uneasy asking for help all the time too. I told him that was not an issue and that I was more annoyed when he didn't ask for help with things. It seemed to click with him that night as he is now always asking for help at each visit, usually when I let him know I'll be down but sometimes he still holds off until I'm actually there. This small change has made a massive difference, to him and to mum, as it's taken an awful lot of the stress out of their day-to-day life knowing that help is just a phonecall away.
The major worrying thing though is that he has on a few occasions taken multiple seconds to recognise it’s me when I arrive. Not just notice I’m there but staring at me and you can see the cogs slowly turning before he acknowledges I’m there.
This worry has also subsided as since he's started asking for help he's much more 'with it' whenever me or my sister visits. I can only liken it to an old laptop that slows down under the weight of ever more resource-hungry programmes, his brain must be doing similar and having removed a level of stress from him is like paring a computer down to the basics. He's still obviously getting older and still struggles to follow complex conversations but he's on much better form on the whole.
This has also had a very positive effect on my mum. She's now much more relaxed (apart from when the shopping is delivered...) and is even now planning to take up my offer to take her on a weekend away so that she can recharge her batteries. Me, my sister and dad all agree she desperately needs it, away from the house and dad for a few days with someone taking care of things for her. We're going to let her pick a date and my sister will make sure she can go visit dad with the grandkids on the same weekend, partly to brighten him up but also to check up on him and keep mum's worries at bay.
The other bit of good news is that the Local Authority finally got round to taking over the funding of dad's nurses that visit twice a week, which was agreed back in December. Up until then me and my sister were footing the bill which had consequences for us both. She has now been able to go ahead with work on her house she had been putting off (new windows and a new bathroom) and I have had the financial straightjacket taken off me that has allowed me to get a permanent, full-time job. It's at a place I did agency work for last summer and they did offer me a job at the time but I was unable to take it due to the pay and where it was (Bristol) meaning I couldn't afford to commute or move and still pay for the nurses. As soon as I knew the nurses were funded I called them up on the off-chance they still had a job available and after a bit of consideration on their side (more of whether the job was still open rather than whether they wanted me!) I started work there a fortnight ago. It's actually slightly less money than I was earning as an agency driver but it's guaranteed, stable wages and means I can now start to plan things and get on with rebuilding my life after it was completely destroyed during the pandemic.
The only bad news to report is that dad is still going downhill with the latest issue being he has trouble controlling his bowels at night sometimes (see the mattress issue above) meaning he has started to soil his bed on occasion. We've got him a new mattress that is waterproof and has a liner as a secondary barrier so as to make cleanups easy. I've also put up a small shelf in his room that will always have a clean set of bedclothes (duvet and pillows already in covers and a fitted sheet he can put on unaided) so that if he does have an accident he can put the dirty stuff in a sealable basket, put on the fresh ones and can sort it all out the next day. It saves him the embarrassment of having to ask mum or me for help in the middle of the night, something he is very conscious of not wanting to do. He's only needed the spares once in the last month and it all worked fine with no problems so that's one thing ticked off the list. He's also gone to the docs to try and find out why it's started to happen so hopefully it can be prevented in the first place or at least monitored.
So all-in-all a good start to 2022, hopefully it's a start of an upward trend.
Good news. It's the small things that make the difference because they all start to add up
I’m really pleased that some things are significantly better in your situation. It’s so difficult to start with - so to have some of that complexity taken away or minimised is a huge win.
I hope, when my time comes, my children are like you.
We’ve got him a new mattress that is waterproof and has a liner as a secondary barrier so as to make cleanups easy. I’ve also put up a small shelf in his room that will always have a clean set of bedclothes (duvet and pillows already in covers and a fitted sheet he can put on unaided) so that if he does have an accident he can put the dirty stuff in a sealable basket, put on the fresh ones and can sort it all out the next day.
Top tip, make the bed: waterproof protector, then fitted sheet, then ANOTHER waterproof protector, then final sheet. As well as the laundry basket, have a plastic storage box with a lid. When the soil occurs, strip the first sheet and proctor into the box to hold the smell and get straight back into bed.
Keep buggering on!
There are iirc specialist laundry bags that you chuck soiled bedlinen in which then dissolve in the wash.
He's happy with the current setup but will keep in mind the multiple sheets and protectors if he struggles to go any night with just one accident. Thankfully it's only on occasion as he normally wakes up first and gets to the toilet fine, only had three accidents so far and now he's aware of it he's automatically waking up to go to the loo.
As well as the laundry basket, have a plastic storage box with a lid. When the soil occurs, strip the first sheet and proctor into the box to hold the smell and get straight back into bed.
The laundry bin we've got him is sealable, more like a small bin. Keeps the smell in fine and is easy to rinse out in the shower, it's actually capable of holding liquids in it without drips! Thankfully he's only having small accidents, not full bowel movements so any mess is minimal.
It’s the small things that make the difference because they all start to add up
Absolutely!
Sat in the car outside A and E while my father checks my mom in. She was with us for three weeks just before Christmas after a stroke-like event. We set up the home care they wanted and she’s made great progress, to the extent that I went back to thinking that life would just roll on gently for a time - them old, me middle aged, all healthy(ish). Now who knows. Poor them.
Ah sorry to hear that Markie, it's a flipping roller coaster.
Sorry to hear that Markis. Life is shit sometimes.
Thanks both. We’ll see what tomorrow brings.
That's not the best news Markie, hopefully it works out well for you and them.
Had some bad news today: dad's cancer is back and in a pretty big way.
He's been hiding it from us but today he actually admitted he was on a downward turn. He went to the Doc's a few weeks ago after his lesions started to become more painful and after a few tests they have confirmed that the cancer is on the rise again. He has already been to see his chemo specialist who has basically told him that he's now too weak to have any more chemotherapy, the only option now is to manage the symptoms. It's this news that prompted him to tell us.
We had all noticed that he was sleeping an awful lot more than he normally does and that regular tasks were leaving him exhausted for the rest of the day so this news is not totally unexpected but it's still a shock to hear it confirmed. He now has the nurses coming 3x a week instead of 2 and he's talking of getting someone in to mow the lawns, which has always been 'his' job, so he's taking it pretty seriously.
I think it's going to take a few days for it all to sink in with me, I've got so much stuff going on of my own right now that it's sort of washed over me in a way. Strange as the situation hasn't really changed, it's just brought it back into focus and up the queue of stuff to worry about. Does mean my thoughts are a bit muddled though, going to need a bit of thinking time to let it process I think.
Would you like some more shit on your shit sandwich? Thats what it is.
Not a lot anyone can say really. Concentrate on what you can do to help. Stick anything else aside to be dealt with another day.
Good luck. Its hard this sort of shit
Again. Get help with your head. Maggies were good with me in helping untangle my disordered thoughts
Yeah, getting used to shit sandwiches after the last few years!
Thoughts are in a bit of a better place after a night's sleep (well, as much as I got in the muggy heat...). Going to have to reassess a lot of things over the next week or so I think as contingencies are going to need to be in place for lots of scenarios. Life would be boring if it was easy I suppose.
Dammit. I can’t really add anything positive, but I just wanted to send a man-hug. This shit is not easy to process alone, so please do consider talking to someone.
It's a bit too hot for manhugs but thanks anyway!
Will be taking time out to sort my head out as soon as I can. Did go for a wander in the Mini Sunday afternoon which helped but a good emptying out of the grey matter is required.
Actually had a bit of positive news last night. Dad has put a lot of pressure on the specialists via various means and they have agreed to let him do another round of chemo in the knowledge that he may not survive it. Fully at his own risk and they still reserve the right to pull the plug at any time but for now he's going to be starting another round of treatment in a fortnight.
Guessing he hasn't had enough of sitting in the lounge watching reruns of antique shows, Egyptology digs and those awful American alien/conspiracy shows yet to throw in the towel!
Had some bad news a few days ago: dad is being weaned off the chemo as his body isn't responding well to it. They're withdrawing each medication slowly to see which ones he can still take (there's 24 different pills!) as he was getting incredibly lethargic and confused. It's hit him quite hard as he was putting all hope on the chemo returning him to how he felt a few months ago, which has been an issue as he just won't listen to anyone who tells him that's highly unlikely to happen.
Going to be a tough few weeks while he adjusts and comes to terms with things I fear.
That's shite mate.
Sorry to here that news
I’m sorry.
Thanks, it's an extra level of stress I and the family could really do without right now. Nothing we can really do about it though so it's just take things as they come.
It was too late by the time FIL discovered he had Stage 4 Lung Cancer - very fast. It did mean we had to move fast so MIL was cared for as she was dependent on carers/FIL. He only lasted a few weeks.
We managed to keep MIL at home for about 5 years, then last 3 years were in a Nursing Home due to inability to 'move'. Fortunately, she's at rest and passed a couple of months ago.
Best Wishes OP
Got a phone call this evening to agree my dad’s end of life care plan. He was a fair old lump of a labourer all his life but is now down to 49kgs and bed bound 🙁
Been coming a while, he broke his hip a year ago. I just hope he has a peaceful passing.
I hope so too kilo, must be tough getting to that stage and holding it together. Hope it all goes as well as it can in the situation.