Watching your parents slowly succumb to old age and Cancer
RJ. I just want you to know that we all support you so rant away. Having just lost my dad (2 weeks ago) and my mum went 6 years ago I am coming to terms with being at the top rung of the family (bar my brother who is 3years older). It really is a shit feeling having gone through the care process over the last 6-12 months. On top of that MrsG82 is suffering big depression/anxiety while being pregnant. We get some support from my bro but he and his wife are firm believers that mental health sufferers should suck it up. FFS!
We are all spread far and wide but shout if you need anything as there are many kind souls on here and I for one will help where I can.Posted 7 months ago
RJ – How did things go with the assessor?
Hoping that there was a decent outcome for team RJPosted 7 months ago
The assessor turned up at 8pm eventually, he’d had a busy day by all accounts! Dad was trying to say he was coping fine and just wanted everything cleared up but I managed to get the assessor and me alone while we inspected the garden shed and fencing. Ha said straight away he would be recommending an urgent relocation as there is no way staying in the house is an option with the stench and lack of facilities. The issue is that there is very little alternatives locally so they’re still trying to sort that out. They did have one place to offer but it was in Tredegar that dad refused point-blank, citing transport links as he needs to get to hospital for chemo every week plus tests etc. I think he’s going to just refuse everything though as a few neighbours have offered solutions between them for the next week or so but he is turning them down, I only found out this when one of them caught me putting the rubbish in the skip and told me! The issue is he didn’t report the flooding until Monday (it happened early Sunday morning) so everyone else’s insurance had already snapped up what little options there were before his insurers knew about it. If anyone knows of anything that’s available for short term rent in the Abergavenny/Crickhowell/Brecon area that is suitable for two elderly people with mobility issues, takes dogs and has 3 bedrooms (one for mum, one for dad and one for my cousin who is living with them still) then PM me as it’s getting desperate. The workmen are coming Friday to start the gutting and drying out work and he cannot still be there for that. If he doesn’t accept something by then the insurers are completely allowed to move him to anywhere they deem suitable and that could be a long way from home. Neither me or my sister have room for even one of them at our places otherwise we’d have had him out of there by now.
Went there yesterday to clear out all the rotting food from the freezers and cupboards, there was an awful lot! I knew they had a hoarding issue but there was 2 full-size freezers, two fridges and countless cupboards full of food to get rid of. 19 refuse sacks are now in the skip at the top of the road! They had both hidden stashes of pasta, cereal, sauces and tins in multiple drawers and cupboards, all ‘just in case’. I found a perfectly preserved 3 pack of 1kg Kellogg’s Corn Flakes boxes in one cupboard, they went out of date in 2015. Worst though was the stench from it all, I had to go and throw up half way through as it was completely overwhelming.
My sister told me later that she had had to stop dad rescuing tins from the mud-covered drawers on Thursday as he was going to wash them and keep them, he admitted to her he’d been doing the same with cereal boxes that were just above the water line. Completely unacceptable for him in his current state. He genuinely thinks he’s coping fine with it all, neighbours have told me he’s refusing any offers of food or drink and all he’s worrying about is silly stuff like are the recycling bins clean ready for the rubbish on Wednesday.
Mum is still in hospital and will be for a while now. Her immune system is basically attacking her skin, producing loads of water blisters that are rupturing and leaving her covered in scabs and weeping wounds. As she’s in hospital I don’t have to worry about her too much, just keep the visits from me or my sister regular and take in supplies of treats for her.
I managed to get the heating in the house running again so dad’s not having to rely on the wood burner for heat. We’ve also found him a small fridge (a Guinness novelty one) so he can keep milk fresh. I’m starting to think I shouldn’t have though as he’s too comfortable sat there all warm watching TV! I couldn’t just not do anything though. It’s completely gut-wrenching to see him living in what’s basically squalor when there’s help if he wants it, why he’s being the way he is I don’t know. It’s like dealing with a 5 year old at times.
So yeah, things are moving forward but nowhere near fast enough for various reasons. The priority is to get them safe, clean accommodation as everything else can then move at whatever pace it needs to. Again, if anyone knows of anything that’s available for short term rent in the Abergavenny/Crickhowell/Brecon area that is suitable for two elderly people with mobility issues, takes dogs and has 3 bedrooms (one for mum, one for dad and one for my cousin who is living with them still) then PM me as it’s getting desperate. The insurers reckon 2-3 months to sort the house out but it could be longer.
2020 was meant to be a better year than 2019, it hasn’t started well.Posted 7 months ago
Time to update this I think.
We found mum and dad a place to stay while the house is being fixed after the flooding. A family friend has opened up their house for them and they are now living there. It’s less than half a mile away from home so they’re very happy to be in familiar surroundings and the family friend has gone way above what they needed to to make them comfortable. Mum is also now out of hospital.
That’s the good news over with.
Bad news is dad is really suffering from the extra stress on top of his chemotherapy. He’s visibly losing weight rapidly and his mind is really struggling to keep track of conversations and day-to-day life. Mum is coping but her watching him deteriorate is really getting to her, thankfully the family friend who is putting the up is really helping her cope. I’m limiting my number of visits due to the virus but I’m making sure I phone them every few days with my sister doing the same. It’s a struggle but we’re just taking it one day at a time, we can’t really do any more than that.
The work on the house hasn’t even started yet, it’s going to be a long time before it does. I helped clear most of the savable stuff out with my sister last week so it’s all ready to go but the longer it’s left the worse it will get.
So it’s not really moving forward or backwards as such, it’s the worry about the Covid-19 situation that’s the main focus right now. They’re both in the most at-risk group: old and with poor immune systems. I fear it’s only a matter of time before they get it and then it’ll be partly down to luck on what happens then.
Tough times lay ahead.Posted 6 months ago
I’m afraid I have nothing to offer other than best wishes. It sounds like your focus now really should be supporting your mum. Oh, and looking after that family friend. Good luck with it all!Posted 6 months ago
If I knew where you were I would give you a hug!
I can only imagine what those of you with relatives with underlying health issues are going through at the moment with Covid-19 looming over.Posted 6 months ago
Well it looks like I saw both mum and dad for the last time for a while yesterday. Didn’t plan on seeing them but I went down to the house to start work on the garden and they saw my car and popped in to say hi. Had a quick chat with them and no physical contact and have told them that if they see my car again to call me first.
Bloody heartbreaking thing to say to your parents when they need my help the most.Posted 6 months ago
Well time to put a bit of good news on this thread, although it will be counteracted by bad news too.
Finally got my dad to see sense and stop going out every morning to the newsagents for the daily papers. Between me and the shop staff pestering him he’s agreed to have them delivered. Small victory but a good one.
That’s the good news, the bad news is that he’s really starting to go downhill due to his chemotherapy being paused during the current situation. Mum says he’s getting visibly weaker every day and he is really struggling with his immediate memory. He’s still fine on the big things like where he is, what day it is etc but anything done in the 30 sec – 5 minute range is lost on him. It’s driving my mum crazy but there is nothing we can do about it.
The hardest bit about all of this is that neither me or my sister can go and see them, check things first hand. Phone calls just don’t cut it and they have no means of doing video calls. I felt helpless before all of this but doubly so now. Mum will keep ticking on for a while yet but I genuinely don’t see how dad can survive until the end of the summer.Posted 6 months ago
Well after a month of no real change in anything it looks like my dad’s cancer is starting to run amok again. He’s suffering with new lesions popping up all over his skin and the old ones that were receding thanks to treatment are coming back. He hasn’t had any chemo for 5 weeks now but the hospital are keen to get him back in as soon as they can but that could be a while. The cancer ward has no staff due to redeployment and absences so while it’s there it’s pretty useless with no staff. He’s starting to go stir-crazy too, going out once a week for his treatment would actually be a good thing for him mentally as well as physically. He’s still venturing down to the house every few days with my mum to do some gardening and sorting as it’s only 500 yards away and the workmen aren’t there (all on furlough) so I don’t know whether that’s helping him mentally or not.
Really hard to know exactly what their situation is over the phone, they both have a habit of understating things (it’s actually a family trait!) and insisting they’re all fine but as I can’t visit them and see for myself it’s very hard to not worry.Posted 5 months ago
Sad as this situation sounds, the fact that he is getting out a bit is good, much better than many people (my mum was a prime example) who simply shut down and do nothing but get futile treatment till they die. So celebrate (and focus on) his successes in doing stuff I say.Posted 5 months ago
I feel for you reluctant, my Dad died last Monday after a relatively short battle. And I suffered all those things you mentioned, the main one being getting what was really happening over the phone.
He mentally checked out months ago so the information we were getting was next to nothing making the stress of not knowing whether to go visit him today, tomorrow or next week or is he even alive draining. Luckily we got to see him 2 days before he died and it was obvious he was going then, so we at least got to say a goodbye
Now we have to deal with a Covid funeral were they’ll be 12 people (as opposed to 100+), his body will already be there, then its a 20 minute service with no wake. We’ll do something in the summer but it won’t be the same
Like CSB says the fact hes getting out and about is a positive sign, my Dad (though he had some complications) didn’t leave the house after Christmas, which in part led to his rapid declinePosted 5 months ago
Sorry to hear that Mehr, not the best of times to be dealing with funerals and all.
Yeah, happy he’s getting out relatively safely but having not seen him for nearly 6 weeks now means I have no idea how he really is. He was visibly looking older and weaker every time I saw him since the end of January so hopefully he’s not deteriorated too far since. The urge to just jump in the car and go see them both is rather strong but I have to resist. The hope is he easily makes it long enough to move back into the family home and get settled again. I think being in familiar surroundings and being able to potter around on his own little projects would do him the world of good but that may be a long time away.
It’s a strange situation where I want lockdown to end ASAP so I can go see them but also don’t want it to end as it’s there to protect people exactly like them.Posted 4 months ago
Just been delivering to a customer on a retail park and spotted my mum’s car in the car park. Rang her and they’re both in B&Q to buy a lawnmower, hedge trimmer and mulcher. I’ve already arranged for a neighbour’s son to do the lawn once a week so there is no reason for them to be out!
The place is full of old biddies too, all out to get plants and compost. Don’t think they got the memo the bank holiday isn’t today.
So angry right now.Posted 4 months ago
Reluctantjumper, it’s at this stage I think you need to pull back a bit for your own sanity. You clearly care immensely, but they’re adults and clearly aren’t listening. If you try too hard to ‘parent’ them you’ll do yourself in.Posted 4 months ago
I’m trying to but it’s incredibly hard when one minute they’re asking for help and advice then they go against it or just plain ignore thing.
At least I know I definitely couldn’t deal with having any kids!Posted 4 months ago
Well I’ve just had a tough phone call with my mum.
She’s rather worried about how dad is doing. He’s visibly losing a lot of weight and his legions are running riot with a few looking like they’ve become infected. The local nurse that has been coming to dress his wounds has referred him to the high risk team that are dealing with urgent cases right now and they’ve agreed to get him in for an examination early next week. She took blood and skin samples today for urgent analysis as she’s concerned with the way everything has flared up in the last week. As it’s been nearly 7 weeks since his last chemotherapy session it’s looking like the cancer has come back strong and with a vengeance. The cancer ward that was treating him is still not operational so they’re having to see where they can get him to be assessed and possibly restart treatment.
Bit of a shock to the system as he was getting along fine recently from what he was telling everyone. He could have been hiding it from us, easily done over the phone, bu even my mum has been caught out by it. jsut got to wait and see what the docs say next week.Posted 4 months ago
Sorry to hear that. this sort of thing is tough at the best of times.
Hospitals are generally managing this sort of thing well by cohorting patients so risk of going in to hospital is low.
good luckPosted 4 months ago
It’s not the risk of catching anything that’s the issue at his hospital, it’s staffing levels hence why they have had to refer him.
Trying not to worry as there’s nothing I can do to control the situation but on top of everything else it’s not great.Posted 4 months ago
Time for a little update on this, mainly to keep it as a sort of record of things!
Have seen mum and dad a few times now since I’ve been allowed to according to the WAG. It was a massive shock the first time! They’re still both living in the friend’s house as the workmen haven’t managed to finish fixing the flood damage, just waiting on fixtures to go in before decorating so not long left. That’s all in hand though as steady progress has been made and we can all see the light at the end of the tunnel. It’s been so long the dog has forgotten where is proper home is!
What shocked me though was seeing dad for the first time in months and it’s taken a few visits to take it all in. He’s lost (and still losing) a lot of weight, as in a few stone, and it really shows on him. He’s gone from looking like he was 60-70 to definitely looking his full 80 years and a bit more. He’s not quite at the stage where he looks hollowed out but it’s not far away! He’s been having chemo again for a few weeks now and it has made a difference to his lesions. He’s definitely more comfortable too. He’s also becoming incredibly forgetful and nadgery, to the point he’s driving my mum nuts most days. Nothing we can do about that but let it wash over us I suppose. HE’s still got his marbles but it takes a long time to explain things to him now and he easily gets obsessed about stupid little things. What is worrying us all though is that he’s very low on energy, he needs to take 2-3 naps every day and doing anything physical wipes him out for a few hours. Again, nothing we can do for him but that doesn’t make it any less painful to see.
Mum’s coping ok, still covered in little scabs from the auto-immune system fighting itself but on the whole doing ok. I think looking after dad is one of the things that’s keeping her going.
What’s worrying me is that I don’t want to go and see them. I’ve got a lot of stress on my side to deal with right now (redundancy, uncertain future etc) and having to deal with them on top is close to pushing me over the edge so I’m limiting my time there with them. As I’ve been pushed beyond my capacity not long ago I’m very aware that I need to avoid that happening again. I know I’m close to it as I have had to leave a ride with mates early and turn down shifts at my temporary part-time job as I just couldn’t process it. The temporary job is also messing me around with the possibility of going full-time soon and there are a few other things that worry me about the way the place is run too, all adds up to extra stress. Thankfully money isn’t an immediate issue as my redundancy pay will give me a healthy cushion but I really don’t want to eat into that cushion if I can help it. I have a nasty feeling I’m going to need it to support mum and dad in the not-too-distant future.
So that’s the current state of play. Small bits of good news but lots of bad in there too.Posted 1 month ago
So glad for the update.Posted 1 month ago
You are a hero going through all this and keeping us updated.
Nowhere near a hero! Just fighting the battles as they come.Posted 1 month ago
You are doing way better than I am. I am watching (slightly different but no less disturbing) decline but they’re in Germany and I’m here. So well done for being able to help out proactively but also don’t beat yourself up about what you can’t do (this is something I am working on).Posted 1 month ago
RJ that reads like a lot more positives than negatives. And they sound like they’ve got a modicum of quality of life.
I got to see my Dad of 87 (who’d been isolated since March) last week for the 1st time. It was lovely, outside in the garden, but not being able to hug him or him hug the kids was sad. Getting old really looks like it sucks doesn’t it!Posted 1 month ago
Hit a bit of an issue yesterday.
The workmen have nearly finished repairing the house after the flood damage, the last few jobs were meant to be done this week. On Monday the gas fitter came to fit the cooker only for him to say he couldn’t install it as the wiring arrangements around it were against regs so he had to refuse. The main supply for the cooker is off to the right where he said it has to be behind the cooker with a remote switch. No problem, if that’s how it’s got to be then so be it. To fix it though the workmen will need to remove 2m of the tiling and a new cupboard, install a new hidden wire, remove the old wiring and then refit everything. Just another setback so no big deal.
Except both mum and dad have got it into their heads they’re moving back in this week. Mum had placed a home delivery from Iceland for today of enough food to fill the freezers (she has two for some odd reason), tomorrow there is a delivery of furniture scheduled and dad has started to get small boxes out of storage and filling the drawers up. I knew none of this.
Yesterday I went down to assemble the kitchen table and chairs plus mow the lawns. Did all of that with no issue, put the white goods in their places and ready to be switched on for the food delivery. It was only at the end of this that dad mentioned the cooker issue and showed me the email from the insurance co. contact. It stated:
Work is on pause until the cooker issue has been resolved.
Any new deliveries of furniture or getting items out of storage should be put on hold until further notice.
The handover day will be pushed back, a new date will be advised shortly.
I’m ashamed to say I went mad at this, the whole day was completely wasted and had to be completely undone. Mum and dad refuse to believe they won’t be moving in on the original date, both of them basically throwing tantrums when presented with the facts. I quickly emailed the insurers who got back to me this morning, they can’t get any workmen in to fix the cooker issue for at least a week. I had warned the parents yesterday that it could be a few weeks to rectify it but they were having none of it.
Phoned mum with the details I’ve got from the insurers earlier and she just said ‘Oh well, I’ll be moving back and just have to do without a cooker then.’ I put the phone down at that point and my sister is now going there to try and talk sense into them.
I know they just want to be back home and that delays are frustrating but they just won’t listen to me. Finding it really hard to keep my calm with them, something I need to do as it’s possible I may have to move back in with them in the new year if I don’t find a job capable of paying the bills by then. All of the stress from this and trying to find work is driving me nuts.Posted 1 week ago
Well, I saw them for the last time for a while today. Went down there to do some of the heavy lifting of furniture and package boxes so that they can start to put the house back to a normal state. They should be able to move back home next week. The problem is I’m in one of the Welsh lockdown areas so won’t be able to go see them unless it’s classed as an emergency, so basically not until christmas and even that may not be a given!
Really crap timing all things considered.Posted 2 days ago
The problem is I’m in one of the Welsh lockdown areas so won’t be able to go see them unless it’s classed as an emergency
IANOL – However, I think, as a primary carer, you are allowed to see them. IMHO You are a primary carer as they need someone to move furniture and sort stuff out that they are unable to do themselves in order for them to move back home with health conditions.
It mightt be worth you checking on .gov.uk as advise changes frequently and I am not in Wales, but the above is based on BBC news advice that I overheard yesterday while I was wondering if I would be allowed to visit my elderly/vulnerable/end-of-life mum if we go into local lockdown.Posted 2 days ago
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