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Ffs this is bollocks to deal with eh ?
He went down again yesterday , blood count down to 61 ?? apparently very low.
Took him in today where the eventually decided to give him 2 units but wanted him into observe overnight.
No way , he is demanding to go home, and Mum is just agreeing with his wishes.
They have no carers or helpers coming in and he has already fell a few times as he can't do anything. ( I bodily lifted him into the car today)
Also turns out Mum isn't telling me everything in case I "interfere" which obviously I have.
She is unconcerned about her own welfare so is telling us nothing that is really happening.
He simply want to die at home and nothing is stopping him.
I'm a little pissed off as that means he doesn't think about my Mum, and she is going along with it.
Brother (not seen me in 4 yrs not seen parents in 1yr) came in yesterday, saw him and broke down so I left them to that.
Other brother, not a clue ! never heard from him in 2 yrs,
Neither helping in any way.
Uncle (Dads brother) widowed 3 weeks ago, now in hospital due to falling (doesn't eat, doesn't care, just drinks now)
Been in a fortnight, is now shouting that he's being held hostage and wants the cops ! lol
Complicated bollocks at that.
Edit to add, cancer can **** right ****ing off.
Awful for you brads, keep using this thread to let off steam.
Well things are taking a turn for the worse and really getting to me at the moment. Unsure whether it's due to things getting genuinely bad or it all just piling on top of other things that are going on right now.
First the good stuff. Mum has finally embraced doing shopping online, using it for basics and when she doesn't feel like going out to do a big shop. She still asks me to take her shopping every now and again but she is no longer putting things off and waiting for me to visit, so that's an improvement. That's the end of the good stuff.
Dad is really starting to deteriorate though. He's definitely showing further early signs of dementia: not being able to keep track of conversations, struggling with everyday tasks, struggling with where things in the house are and the big one is putting things back in the wrong place. Mum has found him putting random stuff everywhere, from the TV remote in the bathroom to oddball stuff in the fridge and freezer. His personality is changing too, essentially regressing towards child-like tendencies and getting very frustrated with stuff. He's also very low in energy, sleeping for 12 hours a night and taking multiple naps during the day. All this is putting a lot of stress onto mum as she has to deal with this all day, every day and the strain is showing in her. Mum has also had a flare-up of her skin condition so is in a lot of pain, especially when sleeping. This is all adding up to making the atmosphere at home a little tense at times. I took mum shopping this afternoon and as soon as we were heading back home all she could think of was having to deal with dad and his insistence to put it all away. Trouble is he is putting it all away in odd places: frozen stuff in cupboards, cereals in the fridge, that kind of thing so mum has to wait until he's put it all away and sat down in the lounge. She then goes round moving everything to the right place before anything comes to any harm. If you try and stop dad doing this or try and correct him the child-like tendencies rear their head and he goes into a strop, denying he's doing anything wrong and reiterating that he's not useless over and over.
All of this is making me wary of going to visit them, even though I know I need to. I'm coming away from there every time in a very poor mood, fearful of where this is ultimately ending and worried about what will have got worse the next visit. My sister is pretty sure I'm reading more into it than is there but she is only ever there for 1-1.5hrs and with her kids so mum and dad are on form, she doesn't really get to see them at their worst or even shortly after she leaves where they both pretty much collapse with exhaustion from the mental workout they go through to keep themselves both functioning well. The result is I'm really struggling with mustering the energy to go visit them, which is not a good thing! It's all just adding another layer to my normal stresses from still trying to find permanent work and not having much time to do things I want to do. I've hardly ridden the bikes all summer, visiting friends has been difficult and the only real release I've had all summer (taking my Mini out for a drive) will no longer be there from today. Times are looking a bit bleak and we haven't got into the realities of winter for mum and dad, which I know they will both struggle with. How they will cope with any re-imposition of any Covid restrictions I don't know.
Really don't know what to do about anything right now on any front, there's no obvious path through let alone an easy one. All that above is a bit rambling and incoherent but that's the best I can do at the moment.
@brads - hope things are improving for you at the moment.
Thinking of you brads and reluctantjumper.
I know exactly how you feel about all that. My mum has been suffering with Alzhiemers for about 7 years now. With my parents back in Belfast and me here in Manchester it makes it even more difficult to manage from a personal level and a family one. All you can do is support and be as normal as possible. I am waiting for the call to say that my mum now needs more help. She currently goes to a day centre every other week which is not enough. Ny dad needs more support too. Frustratingly I get kept in the dark about all the little details. My dad tries to protect me I think. I spoke to him last week and he told me she is now talking to herself and people who aren't there. She doesn't really recognise me on the phone now. But all you can do is try and treat them as normal as possible.
Keep the head up, you're doing all you can.
JUst in case it helps someone else...
My dad has been slowly going downhill for a while - forgetfulness and losing his mobility (not helped by the fact that he is also nearly totally blind, so can't do a lot of stuff to keep his mind active like reading etc). He was stuggling to stand from a dining chair, and developed a bad cough after eating - almost like choking.
Long story short it turns out that some of these symptoms are Parkinsons Disease. I thought it was just shaking but apparently not - he doesn't have that as a symptom. Is now on pills for it that have made a significant difference to mobility, eating and even cognition. He is still forgetful, but will now join in and follow a conversation, which he had stopped doing. Mum says he is sleeping far less as well (was 15+ hours a day at one point).
Worth knowing, if like me you think Parkinsons was only Michael J Fox / shaking hands etc.
Well finally he is in the house in a hospital bed downstairs with carers 4 times a day.
At last I can semi relax.
Been a tough few months that have resulting in some clashes with my mother but hopefully it will calm down till the end now.
No more treatment so hopefully it all goes easy for him now.
My MIL is getting pretty bad with Alzheimer's. My other half has pretty much moved in with her now. At the end of August she fell and hurt her back and since then it's been one thing after another, last week she was in hospital for 5 days with pneumonia. For the last two or three weeks she has been very weak and tired, not eating much and visibly losing weight. She's very demanding now, I want to go outside, it's too cold, I want to go in, I want the TV on, turn it off, put some music on etc. She's always been a very busy person, so she can't cope with sitting and doing nothing. We're looking at a care home and scraping together the money the care home require for the first five months or so and getting the house in a sellable condition. We have two teenage kids, who are no trouble at all thankfully but I've never been so tired. It's relentless.
Well i think it's starting here. Dad gave me his retiral watch (bought with some of his lump sum) mum called today to ask if i'd be a name on an account so if something happened to her there'd be monay to look after my father.
I mentioned powers of attorney but she doesn't want that yet. Real concern is dad does all the bills etc online and mum barely knows where the on button is.
I managed to arrange POA for my dad (both financial and health). Luckily for me my uncle Dick (not really an uncle but close family friend), told my Dad that he'd done it for his kids. He was amazing and without him I doubt Dad would have signed.
Even reassuring Dad that it is only comes into force when the person is incapable did not have the same impact as that chat over coffee with Uncle Dick.
My advice is to see if one of your parents friends can help you with it if possible. Explain that you can't do anything with it while they remain well but if suddenly something happens you will not be able to act for them.
When my Dad did sign it and I did think it was touch and go whether he had enough mental capacity ......
I cannot state how important Power of Attorney is..just coming to end of all of this..lost Dad in 2011 after a long illness,peacefully at home thankfully and Mum was insistent in all us 5 children having P.O.A over both her finance and health issues..6 years later when Mum was reduced overnight from being fit and active to a semi-paralysed,brain damaged and nearly blind wreck from a series of strokes it allowed us to deal with her immediate needs,get her out of hospital(which was clearly upsetting her) and into a nice nursing home to look after her,to be able to pay her bills,rent out her house and do all the things that needed to be done with the minimum of fuss..she left us in March of this year after nearly 4 years of watching her slowly fading away,,the person she used to be long gone.. but we can look back and know that we did the very best we could and I'm sure Dad would be proud of us.
Please Please Please get your POA sorted out,you may never have to use it but if you do it is a godsend...I simply cannot imagine how we could have coped otherwise
That's good to read @brads, any positive steps are always good.
RE: POA - still having a battle with dad about that, or more my sister is. He keeps on shutting me down whenever it comes up so I have backed away from that issue for a while. We need to get it sorted soon as I fear he will go downhill fast and he takes care of all their household finances. Mum is currently able to take over if needed but that's no guarantee in the future so will talk it over with my sister at the next opportunity.
My dad passed away last week after a couple of years of ill health followed by a rapid decline, still a bit raw but was glad I was allowed to visit the hospital for the last couple of days. He went in a couple of weeks before for a precautionary CT scan & MRI in case his recent symptoms were another stroke - apparently they weren't but he did have dysphagia that caused an aspiration and resulting lung infection.
With recent Welsh hospital Covid restrictions we weren't allowed to visit until he deteriorated enough to go into end of life care, that was pretty tough to take as he couldn't really speak on the phone before and wasn't responsive by the time we were allowed to visit 🙁 I know he didn't want to live in the state he was in (he'd recently gone blind) so that's a small comfort I guess
Anyone dealing with a parent going through a long illness/decline certainly has my sympathy
POA is as important as a will - perhaps more so, though it's not always needed in the way that a will is. We eventually managed to bully and cajole FiL into signing his, which I feel absolutely no guilt over. He's declining steadily due to (undiagnosed but obvious) dementia and doesn't really understand paperwork. Unfortunately his primary response is one of denial and stubbornness.
I mentioned powers of attorney but she doesn’t want that yet.
You can have a POA in place but not activated. That means if there is a time when they no longer have capacity to take their own decisions, it can be used. That will cost you something like £50 per person, times 2 (one finance PoA and one health PoA). My parents finance one is activated, but the health one not. Health PoAs also allow the person to specify how they want to be treated - for example if they want a DNR (do not resuccitate) notice or not, if they want to stay at home etc. Without a PoA then ome random doctor may well have the say.
Leave it until the person has lost capacity, and it will cost potentially thousands, and every major change (moving house, remortgaging) will need to go via court at yet more expense.
On a related note, PoAs are not just for the elderly - if you have a will you ought to have one (two) PoAs as well.
I didnt think i had anything to offer to this thread. My dad had bowel cancer about 30yrs ago, beat it and has had just about every other ailment know to mankind in the subsequent time but like Triggers broom he just keeps going.
My mum on the other hand has had nothing. She doesnt go to the doctors, she hasnt had anything of note and she just supports my dad. Until a few months ago that is. Thats when i got a call from my dad, in tears telling me she has breast cancer. Not only that, she has had it for 2.5yrs and has kept it a secret. Only telling my dad when the open wound she has became too big to hide. It pains me to think of her hiding it for so long wondering what it was doing to her.
So she gets rushed along for every test known to mankind and its miraculous but it hasnt spread. Thats the end of the good news 🙁
She had 2 courses of chemo to shrink the growth. I think she had a total of 6 booked which were due to end at christmas. I say booked because she had her second session about 14 days ago. She had 2 really good days following and then got taken to hospital by my dad with what seemed to be a blood clot in the leg, although this was later deemed not serious. By 12am i got the call off my brother telling me she had a heart attack and died getting into an ambulance to take her to another hospital.
I am absolutely in pieces. I hate cancer and i want my mum back
That's heart-breaking to read TheLittlestHobo, my sincere condolences.
Same to FuzzyWuzzy, not being able to see them must be awful.
Can't really type any more than that, those two posts have made some fears of mine a bit sharper in my mind.
Well my old man died Wed morning.
At home with my Ma, my two brothers and his two sisters with him.
I might not have done that much with him in my lifetime but being there holding his head while he went was the best place for me to be at that time.
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
LittlestHobo
Your mum took those decisions for her own reasons - you have to respect that. a heart attack is quick at least and while the suddenness is hard for those left behind its often the best for the person. don#t be worried about getting professional help with getting your head right
condolences
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.
It's been rather quiet on the update front on here, primarily as there was nothing really to update, but that changed last weekend.
Dad had gone out to the pub when I was visiting last Saturday, all happy and in pretty good spirits. I had left by the time he came home but found out what happened yesterday. Dad had walked back home after a few pints and as he got to the front door he felt light-headed. He says the door was locked (it wasn't, I'd made sure of it when I left) so he went to go and get the spare key out of the keysafe he has 'hidden' on the side of the house. He claims that as he stepped back he fell over backwards but managed to stop himself from hitting his head, got up and opened the keysafe. He then let himself in and went down to the kitchen to see mum. The worry is that he did hit his head, pretty hard too, as there's a decent bruise on the rear of his head visible through his thin hair. He's also struggling to follow his thoughts and conversations more than he has been, as in losing track after 30 seconds or less rather than a few minutes in. Mum insisted he went to the docs on Thursday after a long battle with him insisting he was fine but dad refuses to say anything about it other than the doc said he was fine.
Speaking to him yesterday, in person, he really struggled to follow what I was saying and had to constantly sit down to avoid wobbling around. His walking is also incredibly laboured and stuttery, to the point the dog is looking at him quizzically as if even he can see there's something wrong. Having had concussion myself a few times I recognise the signs but any attempt to bring up the subject was met with quite a bit of resistance. Mum's going to try to get him back to the docs this week as we're positive he's not telling then what actually happened. It's all very concerning as when old people start to fall for no reason and refuse any help it's always a Red Flag for something more serious. Had it with my grandfather just under a decade ago who was found one day in his flat by the warden doubled up against the washing machine and having a severe heart attack before they could get any medical help to him.
I don't really think there's anything I can do other than just visit regularly and be prepared for 'the phonecall' if it arrives.
Sorry to hear this. Stay strong, you're clearly doing a great job.
I wouldn't risk it on this - I know the oldies can be belligerently 'don't make a fuss' but any knock to the head and confusion is a warning sign to me (and no matter what he says, a bruise says different)
This was years back, but my Dad had a fall - pulling weeds up on the rockery one gave way and in stepping back he lost his footing and fell back onto the grass. As it was grass and there was no obvious effect other than mum pissing herself laughing at him, they didn't do anything.
Wind on about 4 weeks and they were on holiday in Portugal at their timeshare, we were out there for part of it and I noticed as he was swimming in the pool, he didn't seem to be pulling with one arm in the same way. He's no Mark Spitz but has always been decent so this was odd. I asked him about it and he admitted he didn't feel as co-ordinated that side, and then watching more closely he was a bit 'stumbly' with his knife when eating. So we insisted he got checked when he got home.
CALSS, the doctor did some basic squeeze my finger tests, etc., didn't like it, referred to hospital for a scan. Hospital scanned him that day / mid afternoon and immediately admitted him. Consultant reviewed him that evening and bluelighted him from Reading to Oxford where the regional head injuries unit is. Consultant there saw him around 11ish, confirmed he had a small bleed from the fall that had built up enough pressure to now show some symptoms and couldn't go any further so he needed his skull opening and a drain put in. Of course Dad's fully aware and competent so he's fully involved in all these discussions.
The kicker - he said he would do it immediately but he'd just been pinged and advised a car crash / head injury was about 10 minutes out and he'd need to do that first. So he was going straight from my Dad to theatre, then would get some sleep and come for my Dad in the morning. "What time?" we asked "Aiming for around seven he said"
Thoroughly impressed by the NHS service as always. The bit Dad wasn't sure of - assuming the crash took at least a couple of hours to sort, then cleaning up afterwards, and getting sorted in the morning; even if the surgeon was on call / sleeping in a staff room and didn't have to go home, that leaves time for 2-3 hours sleep maybe? He wasn't overchuffed at the thought of someone drilling a hole into his head on that much sleep but as we pointed out, at least he was getting first dibs, rather than getting a hole drilled into his head by someone who's had 3 hours sleep and then a full list.
I wouldn’t risk it on this – I know the oldies can be belligerently ‘don’t make a fuss’ but any knock to the head and confusion is a warning sign to me (and no matter what he says, a bruise says different)
I don't intend to but getting him to A: go to the doc's, B: actually tell the doc's exactly what happened and C: tell the doc that we have spotted changes in his behaviour is nigh on impossible. If I get a chance I might see if I can have a private chat with one of the staff there as a few are family friends, see if they can keep an eye on him somehow. Very difficult as dad is stubbornly independent! He did scare himself a few weeks ago though, he needed to go to a regular hospital appointment but the buses weren't running and mum wasn't in a fit state to drive him so he drove himself there. First time he's driven anywhere in over a year and he didn't enjoy it at all, hopefully that gas out an end to his idea of taking up driving full time again and even buying a second car (mum is considering giving up thanks to her issues).
Lots of things to worry about, that's not even counting my stuff.
Haven't been any more updates to report as nothing has changed. Well, until last weekend anyway and now it's another level of crap on top of the usual crap sandwich.
Last Wednesday I was at my parents to sort out my mum's car with a new tyre and a fresh MOT. Got the tyre done in the morning and when I got back dad was complaining of chest pains and had called the non-emergency line who were sending the next available ambulance out to him. That took just under an hour and they got to work on checking his heart out. They weren't happy so he was taken off to hospital in Merthyr for further tests. He's still in there a week later.
They weren't happy with his blood results, his blood pressure and were worried about a lump in his stomach that he hadn't told anyone about. This was quickly confirmed as a malignant tumour. Through various tests and observations it's been confirmed that he has gone form Stage 3 to Stage 5 with his cancer, all because he hasn't been honest with the doctor on his regular visits. We knew he was keeping it his appointments but every time he would come back saying it was all fine and nothing had changed, this we now know to be a big lie. Sadly he as let it get to a stage where he is now close to End of Life care with zero energy, massive balance issues and finding it a real struggle to follow conversations for more than 5 or 10 minutes before he as to be left in quiet to 'gather his thoughts'. We've been visiting him every day, well my mum has with me and my sister doing alternative days. Mum had a fall two weeks ago and damaged her left knee and ankle so she's not fully regained it's flexibility so we've been driving her, partly to give her some company too. We're all a bit in shock and slightly annoyed with dad for ignoring stuff for so long and also hiding it from us but that's more than outweighed by just dealing with things right now.
Today's visit was terrible. He was really struggling to get out of bed and sit up to have a drink, which is crucial as he has to keep his fluid intake up. It was also when we first saw the size of his tumor, it's on his stomach and about the size of a beer can. He's been hiding it under baggy clothes and with his belly fat but today as he tried to get up out of bed it was obvious as a solid lump, both me and mum just stared at it for a second before he said it was normal and nothing to worry about! A quick chat with the nurses on the way out confirmed it to us, it's something they're very worried about and is the reason he is having a CT scan tomorrow, his second in a week. Mum asked straight out if it was terminal and the Sister said it's definitely the beginning of the end, but that they would know more tomorrow about the specifics. Mum is taking it pretty well considering but I'm really worried that it'll be too much for her soon so am doing everything I can to take the strain off her. It's sort of good that I'm currently out of work but I'm also being careful not to crowd her too, that wouldn't be good. A fine balance to tread. It's not the birthday present she wanted (it's on the 12th) but there's nothing we can do to change that.
Sorry if all that's a bit rambling and incoherent, struggling to sleep and just needed to type it all out. I do fear it's a case of counting down the days as his deterioration is increasing, the test will be how he is on Friday and Saturday.
Can't read through 6 pages I'm sorry but I get the jist. My mum who appeared in not bad health told us on Saturday she only has months to live. Pancreatic cancer that's moved into her liver as well. Chemo is an option but it's palliative and she's seen two friends go through that so she's not interested at all She's only 72. Ive got a 6 and 9 year old. I'm not sleeping, I don't know how I'm going to tell them.
I had a really hard upbringing by my father after they split and he took me to live with him. He was scary back then. The odd visits to see my mum was what I looked forward to all the time. Now she'll be gone soon. I will go to pieces for a period of time when she goes but I will also move forward. I can't not move forward. I've faced so many challenges and being honest it's her spirit that's in me, her character, her personality. "Chin up, Chest out" she would always say to me. That's how I'm going to face this as that's how I know she will as well. 5am sitting alone and scunnered in my living room. I'm away for a coffee and some breakfast and then I've got an old Marin Eldridge from 1991 to build.
It's not nice at all is it. I've got the same attitude right now: get on with what needs doing nut it doesn't make it any easier.
Hopefully the Marin rebuild is progressing well.
When FIL was diagnosed with stage 4 lung cancer (again we think he knew, but said nothing - heavy smoker) we concentrated on ensuring MIL had more care in place as she was immobile. FIL handled all the finances too, so it was a rush to get stuff sorted before he died.
Do you have sufficient care in place for your mum ?
We're having to relook into that part, mum is very wary of others so it's hard to get things going on that side.
Dad hasn't improved at all over the fortnight he's been in hospital so far, if anything he's worse. He has absolutely no energy, walking to the en suite toilet (he's in a solo room) knackers him out for a good hour. They gave him two blood transfusions in the last 24 hrs to try and boost his blood cell count, both red and white are very low, and they have given him a Vit B4(?) injection too, neither of which have had any effect so far. It's really damaging his mental wellbeing as he got his hopes up that they would be a 'magic bullet' to get him back on the right track and that he could come home. There is no way he could do so though, he would have no chance of moving around the house safely and mum is in no fit state to help him if he falls etc. It's really tough seeing him too, any visit of longer than 20 mins and he is visibly drained to the point of switching off completely. I'm having to force myself to go see him as it's heartbreaking seeing him like that. My sister is going there and taking mum in when she can but the majority of the visits are me taking mum with me, only today did I go solo and mum has only gone in by herself once too. It's all getting on top of all of us in reality, mum and my sister especially. My sister only really saw him in a poor state on Wednesday for the first time, she only ever visits him at home with her kids and dad will make absolutely sure he's in top shape for that, when they leave he's destroyed but she never sees that. Me and mum have tried to tell her but she didn't believe it was as bad as she saw, a real eye-opener.
That's a lot of waffle but I can't really tidy it up.
Just got to get through the weekend and see what the docs say after the results of further blood tests. I hope the transfusions have done something good for him as otherwise, from my brief research into stuff online (always dangerous but I have stuck to trusted sites) points to it being one of the last stages they go to. The next is bone marrow transplant and there's no way he would be fit enough to go through that. It's pretty much been confirmed his blood cancer has now taken hold in his liver (hence the big lump) so I don't see how at his age and condition there is much that can be done.
Tough times that I doubt will get any easier or better this side of christmas.
Bloody hell.
Nothing i can really offer mate apart from your doing a great job. Might not feel like it but you are.
I'm doing all I can, been really 'lucky' that I'm currently jobless so have had the time to do what's needed. If I had been in work I doubt we would have all coped! The bank balance is taking a hammering but you only get one mum and dad so I don't begrudge spending the money.
Don't forget to look after yourself too @reluctantjumper
Don’t forget to look after yourself too @reluctantjumper
Yes, you're doing a fantastic job, but reach out for support for yourself, even if just venting on here
Things have taken a bad turn unfortunately.
While he was in hospital undergoing tests they found a big tumour that seems to be attached to his liver, as in the size of the liver itself. This them prompted a second round of tests and scans, These have revealed that his blood cancer has started back up with a vengeance in the last fortnight, it's also mutating. His energy levels went off a cliff and he was really struggling to keep any semblance of energy going, visits were being curtailed to 20-30 mins before he was exhausted.
Then last week we had a diagnosis from all the tests: he now has leukaemia.
This prompted a change of hospital required for treatment, it involves small doses of Arsenic and weeks of isolation as it will destroy what is left of his immune system. He was meant to be moved on Thursday but due to a possible chest infection it was delayed to Friday afternoon where they suddenly decided to move him anyway at very short notice, I was about to take mum up to see him when he called us to say he was getting in the ambulance to be transferred! These delays meant that none of us saw him since Wednesday and we made arrangements for my sister to take mum to see him this afternoon (Saturday). I had a long-standing booking to ride with a few friends at Dirt Farm and mum insisted I didn't cancel it as I was in need of some downtime of my own so like a good little boy I went and had some much needed fun. As I wasn't far from the family home I offered to go there and walk the dog while they were visiting him and see them afterwards for an update. With my riding done for the day I went to walk the dog and as I walked in the door my phone rang with a call from my sister. They had just had a call from the hospital to get there ASAP so I had to quickly grab a shower (I was very muddy and in no fit state to go on a hospital ward!) and make a very fast dash of the 40 miles back to Cardiff as he's in the Heath. Normally takes me 55 mins, did it in just over 42. Took me nearly as long to locate them in the hospital as it's a sprawling maze and I couldn't get directions as there's no phone signal in there and the signs are useless. No matter though as I got there.
He's in a very bad way. Hardly breathing, finds it a real struggle to speak, can hardly move, is on a drip to keep his kidney function going, a catheter so he doesn't have to go to the loo and he just looks completely drained of any life whatsoever. We were all there for 3 hours where he essentially said goodbye to all of us but also tried to plan what he would do when he gets home. The consultant came and had a chat to us with him and essentially got his and our permission to not revive him if he does stop breathing, citing that doing so would likely break his ribs and make any outcome horrible. We left that decision to him and he has agreed to it. He then struggled to tell us all that he loved us and to take care of each other then asked us to leave, which we fully respected. Thinking he might go quickly we hung around in the hospital for an hour, fully expecting the staff to call us with the final news but it never came. That was 3 hours ago so I went home and my sister drove mum back home too. There's no way I can sleep or relax so I'm just typing stuff out on here, help clear the mind a bit.
Mum is slightly hopeful that he may rally back a bit but in reality we are all basically waiting for the phonecall. I will take mum to see him tomorrow afternoon, dad has agreed to this, and hopefully he will be in a better state.
That's another stream of waffle but I really don't know how else to compartmentalise it all right now.
I've never really posted in this thread as it's a little close to home with my mum's situation, so I find it difficult and I'm genuinely sorry for that.
I've no idea what to say now. Take care mate, I'm glad you got to say goodbye even if it was/is premature.