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Elderly parents

Cracking up inside with the relentless of it all

40 replies

Lookingafterdad · 30/01/2020 21:48

Dad is 90. In 3 years has gone from living happily with his girlfriend of 15 years, playing golf, driving etc to being in a nursing home, on a constant rollercoaster of chest infections and delerium on top of dementia, near blindness, incontinence and very limited mobility. But still bright spots of lunches and coffees and chats, finding stuff out about him and feeling like it was/?is all worth it.

The decline started when he fell and broke his hip in 2017 and the day after his Partner was diagnosed with terminal illness and died within months. I miss her so much too.
Dad couldn’t go back to their home after his hip repair due to her illness and so we emptied out our front room and he lived with us for 6 months.
It was a struggle - delerium pneumonia incontinence, unable to be left alone for the first few months, broken nights etc. He accepted Carers for his morning wash ( my chance to leave house for 30-45 mins) but otherwise we were both housebound. If I left him I could not trust him not to try and wobble into the garden or go to loo on his own. I had 3 of my teenagers still at home as well and had to stop my work (self employed).

Finally got him rehabbed enough and well enough to move him into sheltered housing with a care package. But he kept sacking off the Carers because he ‘didn’t need them’. But relied on me to go daily to help ... I couldn’t and wouldn’t turn my back on him. He’s been a great dad and most of the time just a couple of hours of my time every day enabled him to enjoy his ‘independence’.
But he kept getting chest infections ( has COPD) with inevitable delerium - long periods of me getting phone calls at 2,3,4am, finding him with no bottoms on drinking his tea out of the milk jug. I’d get the GP out ( have to queue outside the surgery from 0730 to 0830 as can’t get through on phone) and the steroids would lift his delerium so he was then safe to leave ... but he would need nebulisers 4 times a day and the district nurses would only come once and the Carers ( if he had them) Wouldn’t administer them. So 3 visits per day from me during each crisis.
Crunch point was finding him on the floor having fallen 12 hours before - wouldn’t wear a falls bracelet as ‘they are for old people’
Another rehab period in hospital and discharged with a care package in place ... heart in my mouth all the time as he still had some delerium and was alone in flat overnight. I caught him leaving the flat in his pyjamas and said that’s it, full time Carers or care home.
He’s now in a nursing home. Dementia more advanced and still on the rollercoaster of frequent infections and delerium when he doesn’t know where he is, why he should take his meds, etc and I’m often the only person who can get him to so cooperate when he’s like that. The care home is 5 mins up the road. We still have nice chats when he is well and he’s still ‘Dad’.
The love I feel for him when I button up his cardigan and tuck his hanky up his sleeve is an echo of caring for my dc when they were little.
As is the bone crushing weight of anxiety that is always there. What’s going to happen today? Another fall? Another hospital admission? A nice normal visit?
I just don’t know how to get off this rollercoaster. He’s my Dad and I love him and want to do my best ... but my own life is on hold.
Feel so guilty for wondering how much longer this will go on for. Terrified he’ll die - terrified he never will.
Sorry that was long but cathartic - can’t talk to anyone IRL as people don’t understand unless they’ve lived it. So easy to say just step back. But I can’t.

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Ellaandlouisqueenandking · 30/01/2020 22:41

I don't even know what to say. I am currently going through similar with Mum and have been through it with Dad. Big hugs to you. I have no helpful advice but think the love and care you have shown your father is wonderful xxxx the crushing weight of it all is unbearable at times, I know, but you really are doing your very, very best xxxx

Pol16 · 30/01/2020 23:18

I can only echo what Elland says.
You sound like an absolutely amazing daughter and quite a special person. It sounds like you’ve been through a tremendous ordeal over the last three years and yet you’ve persevered, not letting your Dad down once. My Mum was in a care home near me for the last few months of her life and it was truly the most horrendous experience. Getting endless phone calls from her each day, getting blamed by her for her being in the home; the stress seemed relentless and even though I visited every day and did my best, nothing was ever good enough. Her endless resentment and unpleasantness wore me down. She became an embodiment of all the negative aspects of her personality and the positives disappeared to the point I didn’t recognise her any more. At least you seem to have a brilliant relationship with your Dad which is lovely and of which I’m quite envious as it would all have been so much easier for me if my mother had behaved in a way that allowed us to enjoy the time we had together. Your chats and lunches, few and far between as they may be sound so positive.

But you are clearly exhausted mentally and physically and seem to be dealing with all this on your own. I wonder who is caring for your wellbeing during all this?

Lookingafterdad · 31/01/2020 06:30

@Ellaandlouisqueenandking Thank you so much for your message. Made me tear up. I’m so sorry that you are going through it too but it is such a comfort to know we’re not alone isn’t it? It means so much for someone else to understand, thank you and wishing you strength.

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Lookingafterdad · 31/01/2020 07:21

@Pol16 thank you. I’m sorry for your loss. Sounds like you’ve really been through the mill too.
We might think that moving into residential care would lift the weight from our shoulders but it doesn’t quite work like that sometimes does it? Sounds like you too did everything you could for your Mum, must have been even harder to do it in the face of constant lack of appreciation.
I had a taste of that in the first few months Dad lived with us - in hindsight he was railing at the world and his awful change in circumstances but at the time it was awful. He ‘shot the messenger’ every time I said don’t get up on your own, time for your meds etc - he blamed me for everything. Poor cognition played a part too.

Thank you you are right that I am lucky that I do still have nice chats and ‘feel the love.’ So sorry your road was rockier - but like **Ellasand, take comfort and pride that you did your best and were there for your mum regardless.

WRT my well-being, it’s down to me. I nearly went under and remember very clearly my DH saying ‘you must look after yourself.’ (As I sobbed - not a regular thing! - getting into the car to drive over to another crisis at the home, feeling stretched and broken). He is a lovely man but has very little bandwidth outside of his job to support me and at that moment I realised that yes, it’s down to me to look after myself. So I really make the most of periods of respite when Dad is relatively well and the nursing home is well staffed enough to look after him - I’ve started claiming attendance allowance and whilst the bulk of it goes on stay dry pants (for Dad not me!) and stuff for him, I regularly treat myself to a nice lunch out in town. And witnessing the terrible ravages of old age at close hand makes me so appreciative of being relatively young and having a body and mind that works - I count my blessings over all those small normal things that we take for granted - I can walk in the woods, get in and out of a bath etc. The other side of the coin I guess. It helps.

But the loneliness of this is the worst ... so thanks for understanding and listening, it means a lot.

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thesandwich · 31/01/2020 18:15

looking you write so eloquently about your dad. He is so lucky to have you.
Do come and join the natter on the main cockroaches thread- you will find loads of support, understanding and humour.
And please protect yourself. And make time for your family and dh.

Lookingafterdad · 31/01/2020 21:48

Thank you thesandwich I will.

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Lookingafterdad · 09/02/2020 21:26

Another crisis at the moment. Dad has pneumonia which is stable but not responding to antibiotics. So hard to watch him struggling to breathe and coughing relentlessly - but he is still fighting and doing his best. Drs say get a sputum specimen because the two courses of antibiotics haven’t worked but he is just too weak to actually cough anything up. lung congestion has exacerbated his heart failure and so his poor legs are even more swollen and he now has a huge blood blister above the bandaging of his lower legs so it’s very painful and for the first time he can’t stand up without help from 2, rather than 1 Carers. Old age is so cruel. Still ‘enjoyed’ a brandy and the last slice of Xmas cake though.

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thesandwich · 11/02/2020 16:36

So sorry looking hope he is improving. 🌺

MereDintofPandiculation · 12/02/2020 11:13

How is he now? And how are you?

Lookingafterdad · 12/02/2020 22:20

Thanks so much for your thoughts sandwich and mere.
Dad got even worse on Monday ( he was almost moribund) so got His own GP out who was much more helpful than the ‘hub GP’ on Friday, and switched to a 3rd antibiotic. Phone call from nursing home at 11pm on Monday night because Dad was declining new antibiotic (it had arrived late from chemist and this was first chance nurse had to give it to him - he didn’t take kindly to being woken!) but I went over and he took it once I reassured him ...
Today he is a bit better - still feeling wretched and can’t stand due to weakness and painful leg but more alert and more himself.
So I’m feeling more positive today. One day at a time ... but hiding my anxiety from DH and DD16 as I know they are understandably sick of it all too. Compassionate but sick of it/fed up of it dominating my life (and thus theirs too if I mention it too much). I know it’s only going to end one way ..., but he’s bounced back so many times to a reasonable quality of life it’s hard to imagine this time will be different.
Argh ... it’s not called ‘the long goodbye’ for nothing.
Thanks for listening.

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AutumnRose1 · 12/02/2020 22:24

OP

Hopefully this antibiotic will be better

During my many days in hospital, for others as well as myself with pneumonia, it came to my attention that sometimes they try the cheapest antibiotics first knowing that it’s not the best option for that patient. ...at least I know to ask those questions next time (hoping there won’t be one).

It’s a false economy because apparently most patients end up needing the better ones so hopefully they’ve stopped that now but you never know.

I’m sorry you and your dad are going through so much.

Isadora2007 · 12/02/2020 22:30

I’m wondering if it’s time to consider not giving antibiotics and allowing nature to take its course while ensuring your dad is kept comfortable and pain free? What would your dad have wanted or indicate he wanted to happen at this stage of life? I know it’s awful to even think about but sometimes keeping someone alive when their body is stopping working is doing more harm than good. Pneumonia used to be called old mans friend for good reason. Is there a member of nursing staff at his home you could discuss this with?

Lookingafterdad · 12/02/2020 22:37

Thank you Autumn - I’m really hoping that these ones help and make him feel better. As you will know, not being able to breath properly is a horrible feeling.

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Lookingafterdad · 12/02/2020 23:00

Thanks Isadora - a very legitimate point but I don’t think we’re there yet, although if this 3rd antibiotic doesn’t work we will be getting close.
Dad and I have talked about this several times. Up until now he has had a gritty determination to live. He is an amazing man in many ways - despite everything he takes pleasure from his ever decreasing world. Even today he said how beautiful the sunshine was, how red the cyclamens on the balcony are ( his sight is so bad he could only make out the colour but it cheered him.) His motto is ‘One Life. Live it.’
He hasn’t had a significant hospital admission for a few months and the last one was tough. Myself and his GP thought that he might be better not being admitted because of the substantial risk of him dying in hospital but Dad was adamant ... if there was a chance it would make him better ( get him over the infection) he wanted to try. So he was admitted and he did get better.
But he’s so much weaker and frailer now I cant see him getting out of hospital if he went in. But the halfway house is to keep him as comfortable as possible at the nursing home and throw everything at the pneumonia we can. That’s what he wants at the moment.
Today we had limoncello and salami and he reminisced about being with his friends roaming the countryside during the summer holidays in ww2.
At the moment although he is feeling sick of feeling wretched he still has hope of bouncing back a bit, as he has done in the past. I’m not so sure .... but he’s amazed me before.

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AutumnRose1 · 12/02/2020 23:06

Fingers crossed OP

I’ve never understood the old man’s friend thing

I know not everyone has the same experience but I found it awful to have at 19, then at 30 it knocked me out for even longer... I’m asthmatic as well but at 90 I can’t imagine lung function is too good anyway.

It’s good you’ve had the chat OP but equally good to enjoy cyclamen and limoncello. All good wishes to you Flowers

Beamur · 12/02/2020 23:07

No words of wisdom but you have my sympathies. DH and I have said goodbye to a parent each in the last few years and MIL is gently declining in a home.
It's very hard. Hugs Flowers

MereDintofPandiculation · 13/02/2020 11:10

Dad and I have talked about this several times. Up until now he has had a gritty determination to live. My Dad is the same. I have allowed a DNAR, because he doesn't really understand the gruesomeness of it, and at nearly 100 he'd be unlikely to survive anyway. But everything other than cardiac arrest will be treated. I am finding it quite interesting to argue passionately on his behalf for something I don't really believe in. (I say interesting rather than difficult because I don't think it's any more difficult than discussing palliative care only, it doesn't mean to say I'm enjoying it).

Dad talks about wanting to re-gain the level of health he had 20 years ago. He's making sure to take his daily walk to the far end of the lounges and back again. Hope, and the belief that his current home is temporary until he gets well again, makes daily living for him a lot easier.

I’ve never understood the old man’s friend thing I understand it's not so painful/distressing when you're extremely old. And so much less distressing, painful or long drawn out than most of the alternatives.

AutumnRose1 · 13/02/2020 12:07

the only 70somethings I've seen with pneumonia had a much worse time than I did.

perhaps it's if you're already on a bunch of other stuff including morphine?

Beamur · 13/02/2020 12:45

I think my MIL thinks being in a home is a temporary arrangement too. Sadly it's not as her needs are complex and we can't look after her.

hambledon · 13/02/2020 13:02

I really, really feel for you OP. I have been there, exactly the same apart from the fact that my dad lived about 6 hours away from my home, family, job etc. I had 2 or 3 years of utter desperation and at the absolute edge of my mental and physical capacity (and sometimes went over the edge). He's in a care home now, still a long way from where I live, but it's a good place and they take care of most aspects of his life so that I can just sit and chat when I visit.

It is the hardest thing, it really is. I had no support from anyone else in my family and some people even seemed to imply I was making too much fuss about it. I also had many 'pull yourself together' type comments (expressed naicely of course) from 'friends'. The only thing I can say is that I don't regret having done it and I feel good about it and learned a lot about myself in the process. I honestly feel that those in my family who shirked their responsibilities have missed out on something. Sure, it's torture but if you can manage it without totally breaking down it is absolutely the right thing to do not only for the person you are caring for, but for yourself. I am aware that sounds awful, like I am advocating self martyrdom. I am not at all, just that it's never a pointless thing to do.

Despite feeling abandoned by many people while I was caring for my dad there were some amazing people who really understood. I'm not religious but I really appreciated being told that people were praying for me. It meant that I was in their thoughts. You are in my thoughts and I wish you all the strength and courage you need to survive mentally and physically through this difficult time. It won't last forever and when it comes to its conclusion you will feel glad you went through it and you will be able to live life for yourself again. Flowers

Lookingafterdad · 13/02/2020 14:04

Autumn - thank you. Cyclamen and limoncello it is. Thanks for your best wishes.
Dad has very battered lungs - he’s known to have lung cavities due to either necrotic tissue following pulmonary embolism last year or possibly lung cancer. Either way, on top of the COPD, they are bad news.

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Lookingafterdad · 13/02/2020 14:09

Beamur - thank you. It feels such a lonely path, I’m sorry you’ve walked it/ are walking it, too. Wishing you strength and courage.
After many months, Dad has finally let go of the mirage of returning to his flat. ‘I think I might stay here.’ He said mainly because of the food, it’s completely lost on him that he can’t even manage to get out of a chair on his own. Which is a blessing in a way - the upside of his cognitive impairment is that he doesn’t realise - most of the time - just how frail and dependent he is.

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Lookingafterdad · 13/02/2020 14:14

Mere - respect to you. Dad also has a DNCPR which I signed with the assurances that everything but CPR would be offered for the moment, in keeping with his current wishes.
You’re right that Hope is the thing. Dad still has hope that in a little while he will be well enough for a trip to the pub again in a wheelchair taxi. Until this current episode he was still spending ages looking at the holiday supplements in his newspaper and that’s priceless.
Thank you.

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Lookingafterdad · 13/02/2020 14:21

Hambledon - what a lovely post. Resonates with me. My siblings do very little ( some for good reason, some not) - the ones who could help just throw stones from the sidelines - they prefer to think what I do for Dad is unnecessary rather than wonder whether they should do more.
All I know is that I couldn’t not do it iyswim ... and yes I’ve learnt a lot about myself and my relationship with my Dad. It’s the right thing to do, no more, no less. It will be a comfort to me in due course.

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Lookingafterdad · 13/02/2020 14:27

This morning Dad is a little better! He walked to the bathroom with help and instead of saying he feels wretched, he said he doesn’t fell too bad. Could be a nice blip or could be that the new antibiotics are helping. Whichever it is, we’ll take it!
So I’m not visiting again today and am making the most of it - took the dogs to a cafe for lunch, ignoring the other stuff I should be doing and watching GOT instead.
Thanks so much to all of you for taking the time to read and post and wishing you all strength courage and peace of mind
X

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