Mother facing surgery

[RosesAndHellebores]

She's good, quite fit and still very sharp at 87. However she will shortly have a TAVI to replace a faltering heart valve. It's not too invasive but probably an overnight stay but in a London teaching hospital. It's about 80 miles away for her.

Lots of pre-op tests and appointments which are perplexing her a bit. I'll visit this week and get all the letters in order for her and draw up clear timetables with contact names and phone numbers. I'm booking an hotel near the hospital for her for the night before the pre-op as the appointments at 9.15 with a blood test at 8.30.

The blood test really threw her. She had to book it on-line, she tried six times and couldn't do it. She phoned to try to make it directly and they refused. Telling her to deal with it on line or get someone else to do it. She was very upset. She had me. I did it in about 30 seconds. But it seems wholly unreasonable. What happens to 87 year olds who don't have anyone.

What happens to people without any money? She's had to attend appointments all over her county, tests for this and that at different hospitals - step can drive her locally. They'll have train fares and probably three nights in an hotel (she has step, who's a bit of a liability). All up I reckon they'll run up expenses of £600-£700. What on earth do people with no money do?

Just needed a bit of a rant about the blood test. Without the surgery, she has 12-18 months as heart failure will develop.

It seems very unfair to make her book online and I'll tell you what happens to people who don't have anyone to do it - they don't get it done!

Hope things go well for your mum. I hope you don't take this the wrong way but if I was 87, I wouldn't be attending all those appointments and having major heart surgery. 87 is a good age.

That's her decision and her life is good and continues to be active. She walks to the village most days a 2.5 mile round trip, plays bridge, goes to the theatre regularly, goes on holidays, and still has friends to dinner.

She has a wonderful quality of life and apart from this issue has astounded the medics with her fitness - she told the consultant she'd like another 6/7 years at least because she still has things to do. Bravo I say.

It's not the surgery I'd be worried about, it's the anaesthesia and immobility in the interim that I'd be most concerned about. And recovery isn't guaranteed. I'm not saying this to be unkind, but I would seriously research the value of any procedure. DH had a catheter ablation last year to treat atrial fibrilation/atrial flutter and it absolutely knocked the stuffing out of him for weeks. He was 58 at the time.....

The valve is replaced via an artery in the leg nowadays. There is no general but an overnight stay.

It is her decision and she has complete capacity. Without it she will die.

I hope everything goes well for her.

Like I said - people that don't have anyone must really struggle. It's very unfair.

My father is the same age and is having surgery in a couple of weeks. He also had surgery last year too. He copes OK with doing things online, but my mum wouldn’t manage without help. Both of them find it stressful.

I was just so annoyed for her that they refused to make her an appointment over the phone.

Yes, it’s tricky. I realised recently that my mum was getting her repeat prescriptions by driving to the GP and filling in a request form. She could do it via the NHS app, except she can’t… I thought a phone request would suit her, but the GP doesn’t accept phone requests, and the local chemist’s don’t do phone requests either, only the app.

Fil had one in a hospital 20 miles from where he lives and was out the next day. Costs were negligible.

I'm glad it sounds like your father was OK. 20 miles would be easy peasy. Their nearest hospital that does it is 80 miles and it's not an easy journey so will involve overnight stays to get there for 8.30am and overnight for step while she's in. Staying with us won't help.

If she’s living in a village transport will be an issue as she needs more medical care. There are usually free services for vulnerable older people with no support, luckily your dm has you to navigate it for her.

Agree with @PutMyFootIn though, Fil had his TAVI (dh and I queried at the time if it was a good idea which went down like a lead balloon) at 86 and since then all he’s lived to see is my dh die, go blind, lose his mobility, develop dementia, write his car off and lose his driving licence. He’s now trapped in the house with his wife of 68 years and they’ve always hated each other. At some point I think im going to have to make a safeguarding report 🤦🏼‍♀️

At 86 he had no idea any of that was going to happen.

That is appalling. Our GP is on-line booking only, but if you can’t manage, the receptionist will go through the form and type in the answers for you.

(we also have a very useful blood service at the local hospital - just walk in, and they read off the computer what you need and do it. DH prefers it - 30 min drive each way and minimal wait, cf make an appointment (average 3 week delay) 20min walk to GP and have to get there in time for your appointment). From a sign on the wall it looks like they’re doing it for radiology too)

@FormerlyPathologicallyHappy You could say the same about any procedure at any age

For those querying whether she should have it, I think she should and so does she.

She may be 87 but she has never, apart from this, had a day's illness and takes no medication. She could pass for early 70s, still walks and entertains. Still drives and is on the ball. She did the splits on her 87th birthday (trained dancer) on a day she cooked and served lunch for 8! The house and garden are still immaculate. I might think differently if she had any underlying diseases and quality of life was diminishing.

Whilst I can't stand step, she has been happily married to him since 1981 and the fact that he is 8 years younger has helped keep her young.

The bottom line is that the Dr's are recommending it and she wants it. From what I have read she should be walking round the block within the week and building up from there. Without it she would enter heart failure. Her family is generally long lived and I reckon if she gets over this, she could have another 5/6 good years. Without it she has no chance and she wants that chance.

What am I supposed to do, say "no mother, you are being ridiculous, you are 87 and it's not worth it, let's just let you die? Whilst I don't believe people with no quality of life should have endless interventions, I think she should have this if she wants. She's healthy, she's lived healthily, she's fitter and more flexible than most 40 year olds and as sharp as a pin for a lady of 87. She also worked from the age of 16 to 70 contributing to society via taxes, taking out zippo. She's just not good on the computer. They only use it.for facetime to keep in touch with their chums overseas.

I'm just shocked how hard it is to navigate the NHS and how they don't make it easy for elderly folk.

I'm off in a minute to check out an hotel 800 metres from the hospital. They are very fussy but I don't want them coming up on the morning of the apt. and being caught by signal failures/strikes, etc.

@FormerlyPathologicallyHappy I am sorry to hear about your DH.

I'm just shocked how hard it is to navigate the NHS and how they don't make it easy for elderly folk.

Well your mum has had the advantage of good mental and physical health so you/she haven’t had this experience yet. But not just the NHS, modern life in general is moving on apace with technology and assumes that anyone with declining cognitive and physical abilities will have someone to assist. Someone who is available 24/7, on demand, and is honest and trustworthy. The elderly that don’t have help struggle and miss appointments and get into a mess with utility companies and are vulnerable to scams.

Has your mum sorted out a Power of Attorney? Now is the time to do it while she is sharp and capable so it is there ready in the future.

People with no money can apply for transport locally, for long distance they have to pay but there are discounts available, some hospitals offer reduced accommodation for patients and relatives. Which hospital is she having it done, do they just need 2 nights accommodation, pre op and post op, she may stay in hospital the night of the procedure. I remember TAVI being offered to only younger people so they are lucky it's now offered to everyone who could benefit, I Hope it all goes well for her and she gets home soon. With the blood test I am sure they would have done it at the pre op appointment if patients can't get it done.

@TraitorsGate I don't want to be too outgoing, so I'll say SE London and well known. No parking.

My plan is to book them one night before the pre-op day and then three nights for the op (the night before, the night she stays in and another night, just in case).

I'm just a bit taken back at how hard it is to get the dots joined and how people on their bones would manage the incidental costs. Similarly I was shaken when I broke my wrist a few years ago: taxis back and forth to appointments and for the surgery - and having to have my hair washed and dried at the hairdressers twice a week. I was also fortunate that I have a desk job and only missed two days.

I'm just shocked how hard it is to navigate the NHS and how they don't make it easy for elderly folk.

This is not new, it’s hard for everyone to navigate the NHS. Yes you need both the kit (phone, tablet or PC) and persistence to navigate not just the NHS but most key services.

The forced automation and no alternative but to arrange things online is, IMO, discriminatory against the elderly. You're quite right that those without someone to assist them will either struggle or just not be able to access services and in this particular case would lead to them dying earlier than necessary.

Your DM sounds great OP and there is no reason why she should just accept her inevitable death from this treatable condition, if she's sharp and active and has a good quality of life that she'd like to continue for as long as possible.

@Propertylover I know! It even extends to the courts. I recently had to defend, as a key and expert witness, a three day hearing on zoom!

I appreciate issues with banks, etc., and they still go to the branch to sort stuff out and are facilitated. Their younger friend books their holidays!

I was just shocked st the refusal of an NHS phlebotomy unit to refuse point blank to help an 87 year old, requiring the blood test for a pre-op appointment for potentially life saving surgery.

It surely causes more pressure on resources if simply doing a 90 second helpful task is refused via cancelled appointments, etc. I am minded to write to the hospital CEO.

Please ignore previous posters! A TAVI is not open heart surgery. It’s minimally invasive and usually offered to elderly people. It’s life saving. Aortic stenosis mills you quicker than some cancers.

The bloods is a silly system, given that it’s usually elderly people having a TAVI you think that they’d make more sensible booking systems for them. Good luck for your mum, she sounds fab!

@PutMyFootIn @FruitBat53 I’m sure that it’s unintentional but please don’t spread misinformation about TAVIs.

It’s a minimally invasive procedure it’s not open heart surgery. A consultant cardiologist will have recommended this. Aortic stenosis has a high mortality rate, an older person who’s otherwise well deserves a shot at living longer. A TAVI can greatly improve symptoms and quality of life.

Im a hospital doctor (registrar) and I see patients who are too unwell for a TAVI. Clearly OPs mum is fit enough for one.

My mum needed the same operation in her 80s and the heart surgeon said her heart was fit enough to have it but her kidneys were not because of the dye used in the operation and the pressure it would put on them. She could not have it by GA for the same reason. Her consultant said without it she had 12 months and it was 12 months to the day that she died.

She would have taken the chance of the op like a shot. She was, at that stage, fit , active, sharp as a button but the 'sticky' heart valve took a real toll on her over the next 12 months.

This. I think you have been fortunate not to come across this much before. The online stuff is appalling, I agree.

I'm glad your mother is doing well. But it sounds like you all might need to be prepared for how she might be after the surgery. It can really knock you for six even if you're a lot younger. Is your stepfather okay to do all the care?

I expect she will need a lot of lifts/taxis to get about afterwards.