Communicating/interpreting difficult medical decisions

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Hi everyone

Im 30 and I informally care for my grandmother (81 yr old) with what I can. Ive always helped her but since covid Ive been helping a lot more. She currently has a big decision to make re. Whether or not to have surgery and im feeling the pressure.

I dont know anyone who is in a similar position to me, who understands what its like to care for an elderly relative, so hoping someone can relate in some way and/or suggest things to consider. I’ve been so upset, lonely and stressed, but I’m trying to look after myself too and I have a therapist that helps.

I help my grandma with what I can, interpreting at appointments (shes forgotten most of her English and gets v anxious) and managing her appointments . Even though her son (my dad) is around Im more than happy to help her because we have a close bond and I can fit caring commitments around my work, whereas my dad cant do this and hes not as organised as me.

Over the last 6/9 months shes been having more frequent heart episodes. She was diagnosed with severe aortic stenosis earlier this year and the other week the doctors decided she would be suitable for a TAVI (safer option compared to open heart surgery).

As her carer I feel a lot of pressure to make sure she fully understands the risks of having and not having surgery. The decision is obviously entirely hers, so I see my role as helping her have as much info as possible. As hard as it’s been I’ve also translated letters talking about risk of death with and without intervention.

My grandma sometimes says she doesnt want to do the surgery and other times just says that she is just really scared either way. Shes also grieving for her little sister, who we lost a few months ago in tragic circumstances, which makes things harder. I’ve been calling and talking to her doctors all the time to check we understand the process and risks, as well as educating myself about the condition and sharing material with my grandma too so she understands what is involved. I dont want to overwhelm her, but at the same time, im finding the balance of giving information and not overdoing it really hard.

On top of this, pre surgery, I have to record her symptoms and any changes in detail every day and report them weekly. It’s a nightmare for someone to remember exactly how they were on a given day especially when theyre elderly and/or forgetful!

Thanks for making it to this point and reading. Any support and advice is much appreciated.

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Hi @Phoebe6293648
Welcome to the forum. I’m glad you decided to reach out and share your situation. It’s overwhelming and a lot to take on, so I’m really glad to hear that you’re trying to look after yourself too.
Sending a LOT of empathy and support.
Caring for an elderly loved one is already really tough, adding into that the need to translate literal terminology and compensate for cultural differences makes things even more painful I’m sure! You must be doing your best-amazing efforts to ensure your grandmother understands everything…so firstly I just wanted to say please remind yourself that you are only human and can do your best and that is good enough. Some things may be lost in translation which you cannot accommodate and make up for you cannot do everything perfectly. I can hear the pressure and burden you have on your shoulders, in the absence of others including your Dad. Regardless of reasons or rationales, you’re there and doing your best - BIG BIG hugs and bravo!! We see and know how much that takes!!!

Your grandma must be really comforted having you with her, walking her through everything and especially when she is grieving for her little sister. I’ve heard of TAVI and as far as I know its a very common procedure these days to help bloodflow when heart valves or vessels are narrowed.
I’m familiar with a lot of the heart issues because Dad had his first heart attack when he was around 47yrs of age and a 5-way heart bypass…then most of my adult life he had heart issues incl congestive heart failure. So I feel your heartache - literally

Re. recording her symptoms - on Amazon you can get an oximeter with BP measures e.g. https://www.amazon.co.uk/OxiPro-Supplied-Saturation-Certified-Pulse-Oximeter/dp/B09NQPMRKQ/ref=sr_1_5?keywords=pulse+oximeter&qid=1699295186&sr=8-5

Checking she’s getting enough oxygen and her blood pressure at different times of day is helpful to understand if her heart is pumping well enough
There are also blood pressure BP monitors in smart watches, or you can buy one on Amazon.

My Dad, in the last year was really bad and whilst he used to be a doctor and very articulate some days were bad for him…A simple question or charting things could be
minus 5 to plus 5 where 0 = I’m fine and ok, get her to put a cross on where she’s feeling in the moment…over the day and days you can then both see if she is better or worse than the previous ‘x’ mark…otherwise ALL days merge into one - even for me I forget what happened when!
A NON digital mark on paper can help map and orient her…for Dad he hated the repetitive are you ok questions!
Also means you can show the doctors a line map of how she feels

Be careful of her getting up too fast and feeling dizzy, her heart will be trying to catch up sending blood to her head and feet, so asking her to sit a couple of minutes on the side of the bed before standing is a good precaution…or for her to put glasses on or read the time is a good distraction & pause :wink:

When you need a bit of company and distraction check out the Roll Call thread: https://forum.carersuk.org/t/roll-call-november-2023/123939?u=victoria_1806

Ask any Qs, happy to help - catch me over in messaging (the speech bubble on the top right) if you have specific questions for me you’ll see my profile if you tap on my profile
take care!

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Hi there, I have been in the same boat as you on deciding what is best for someone health and sometimes it should be someone from the medical side to help you explain things or maybe your dad than just you. It awkward when you get asked do you want people to live or not as really it should not be down to you but others as it can cause a problem later on. Ask for help and advice is not to be fully afraid of as there always help.

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Welcome to the forum.
Caring for an elderly relative who originates in a different country and a different language presents a lot of extra challenges. I’m concerned that too much is being expected of you.
Regardless of income and savings, you nan may be entitled to Disability Living Allowance, which could be used to provide some extra support, and enable you to have more free time to socialise.
You say she has forgotten a lot of English now, apart from that, is she OK mentally, and physically?
I’ve had eight operations, each one has been difficult in different ways, and there are always risks, as well as rewards, with any surgery.
At 81, she is inevitably reaching the end of her life, but the quality of her life would be improved if the surgery was successful.

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Hi @Phoebe6293648

does the NHS arrange for an interpreter to be at her appointments? If not, you can request this. It would mean that someone else could explain the pros and cons of treatments to her in her home tongue.

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@Victoria_1806 Thank you so so much for your supportive message and especially for just accepting my situation as it is and being supportive. So many people in my life just jump to asking why my dad isnt doing it and I know it comes from a good place but it doesnt help how Im feeling regardless.

I was so so overwhelmed when I posted this and then reading your message was so helpful and I couldnt stop crying. It helped me so much I kept re-reading it when I felt very low. Felt like a breathe of fresh air having someone say stuff that I could resonate with completely.

Really appreciated all of your suggestions and have been using them these past couple of months.

Thank you again and wishing you the same kindess and support you provided for me.

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Thank you so much to everyone who commented - I’m so sorry it has taken me so long to reply… I was so overwhelmed at the time, and read all the messages which gave me so much comfort but I just couldn’t bring myself to reply. Really appreciate you taking the time to read and comment.

All of your support and suggestions gave me the confidence and motivation to ask for support from both my grandma’s doctors and my dad. I couldn’t sort out an interpreter but after the suggestion, I realised how much it would help me if someone else translated things for my grandma. I also asked my grandma to please tell my dad, for my sake (because she didn’t want to cause a fuss and tell him). And arranged for a friend to interpret what the doctors had been saying. She’s okay mentally otherwise so I wanted her to decide to do these things, to help me as well as her.

I found some helpful books re. valve surgery from the british valve society in case of interest; https://bhvs.org/product/patient-book/ and the BMA book “understanding agina and heart attacks” by Chris Davidson- super simple and easy to understand. And just found a specific support group re. Valves : https://heartvalvevoice.com/

Long story short, she decided to have the surgery and shes having it next week. she wasn’t sure for a while until her health deteriorated a little which resulted in going back and forth in A&E the last 2 months. So thankful for all the amazing doctors who I spoke to and who helped her. So just hoping it’ll all be okay and I know I’ve done everything I can now. I feel less alone now that my dad knows and will be with us in hosp too. Now all thats left is for the doctors to do their thing :pray::pray::pray:

Thanks again :heart:

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That was a brave decision, I hope it all goes well. Having had a number of operations, I’d suggest getting some small cartons of fruit juice as hospitals are very dry places. The little ones are better as there is nowhere to store a large one. Also a travel pack of wet wipes. Keep in touch, I’m sure you are all very anxious at the moment, this time next week hopefully you will be able to relax a bit.

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@Phoebe6293648
Awww Thanks I’m so glad what I wrote could be a comfort and support for you and the situations.
Gosh you’ve been busy AND so productive! I’m SO glad to hear that there are more people in your ‘Care squad/team!’ This makes a lot of sense and relieves you of carrying all the weight of all the tasks and emotions. In particular, I’m happy to hear your dad is now aware.

I’ll be thinking of all of you (not just your grandma) next week, because it is stressful for ALL of you. Waiting is torture! Sending little prayers, hugs and may I say I’m so impressed at how you’ve navigated all of this …and with language and culture and generation considerations in the mix!

Take a well deserved pause, to recoup some energy…and can I suggest that you plan how you’ll do the ‘waiting to hear’ on the day…distract your brain with Netflix if you’re not working…or get the shopping in with your Dad…

FYI Coming out of hospital | Carers UK
Hospital post-operation can be nerve wracking times…sharing the Carers UK web page, to prime yourself on what to expect…ESPECIALLY if e.g. the operation is Wednesday and IF she needs a 3-4 nights to feel stronger…hospitals like to discharge quickly…

Given some of the things with my Dad - ASK for haemaglobin levels and to check if she’s anaemic - sometimes an extra fluid or blood transfusion can help…
I’m not a doctor but can’t hurt to ask these kinds of questions…

We’re all here if you need us! BIG hugs

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Oh thank you so so much :heart: i didnt realise what support I needed until I read your message, it’s something everyone will go through in some way but people rarely talk about it. So thank you for sharing your experience and advice.

I didnt realise how much more relaxed I was after my dad knew everything and he also came to A&e with us. He didnt know about the first time then got upset with my grandma, so then the next 2 times she told him and he came. Lifted so much pressure off my shoulders. Not being alone made a huge difference.

I think I went into panic mode and for me that looks like researching as much as possible! Honestly there’s so much you need to know to just be able to speak to the doctors and ask the right Qs and just be able to understand what theyre saying, im sure youre so familiar with that too. And i remind myself that even doctors get tons of stuff wrong (v sadly) so I can just do the best I can. And even then at some point you just have to do what the Drs say and trust the process :woman_shrugging: Ive also definitely had to find some creative ways to interpret it for my grandma because Im not fluent, and just being kinder to myself for not doing it perfectly as well.

YES the waiting is something I’m dreading so much…! Its the first thing i thought of when they suggested the op, uncertainty is painful. How on earth can you just wait around and not go mad, plus not have a quiet space to go and wait. Im going to try think of something to do and plan it now like you said. Ive been watching this fantasy tv show obsessively, as a form of escapism (haha) so hoping that will distract me enough - its called wheel of time (really good). Also Im just realising I could go outside the hosp and wait there! :woman_facepalming:

I havent even thought about post op and what to do! So will definitely follow your recommendations, cant thank you enough. They want to discharge her after 1 day! So I’m already planning on asking them to be 10000% sure she can go home, so those additional questions will help a lot. Thankfully I’ve forced my dad to join me and stay the night with her after the operation if they do discharge her after 1 day.

Thank you :heart: I’m just praying everything will be okay and taking it one day at a time :pray::pray::pray:

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A friend of mine in Australia had a heart attack and it was touch and go if he would survive for a while. Then he had surgery and a couple of weeks later he was on a plane to the UK for a long holiday! I was astonished.

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@Phoebe6293648 My mum had a TAVI about 6 years ago, under local anaesthetic and -because she was a bit agitated - a relaxant, which meant that she didn’t really remember what had happened. Because she also had a pacemaker (fitted the year before) they kept her in for a few days, but she was up and around the ward from the first day.

The main thing is to be sure that you follow the aftercare advice rigidly, because they use the arteries/veins as a passageway for the new valve.

Fingers crossed that all goes well.

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@Phoebe6293648 a few ideas to ponder on

iPad/phone with downloaded film or tv series, or book - with headphones - so you can sit in a cafe, or the chapel in the hospital or the macmillan area. Check if there’s a Maggies Centre - it’s meant to be for Cancer patients, but the staff are welcoming and don’t probe questions. These are oasis of calm
https://www.maggies.org/our-centres/
You and your Dad take turns to go for a walk with your phones of course
Crosswords, sudoku, card games, wordle,
Journalling your reflections
Texting with us here…:wink:

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@Charlesh47 oh wow I didnt realise the relaxant helps that much! Thank you! My grandmas quite anxious so was thinking whether she might need it. Even better if it means she doesnt remember much afterwards.

Do you mean afterward for the wound specifically? The one they use to enter to arterty? Will keep an eye out for what they advise. Ill be with her for a week after so hoping that makes it easier to follow the advice.

Thank you :crossed_fingers::crossed_fingers::pray::pray: and hope all is well with your mum too

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@Victoria_1806 Great ideas thank you! Theres no maggies there sadly but completely forgot about the faith rooms! Hopefully theyre close by

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The relaxant used is better known as one of the drugs used to spike young women’s drink so that they are compliant and can’t identify the perpetrator…but their proper use is for those operations that need the patient awake and ideally relaxed. Mum didn’t remember a thing about it. Unfortunately she had dementia, which advanced suddenly and massively towards the end of 2021 and she died on Boxing Day that year.

Aftercare for the wound is important in terms of monitoring, etc. Any sign of major bruising or minor bleeding, for example, needs to be followed up. That sort of thing.

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Sedation is great.
I have had some really difficult teeth taken out by a consultant with sedation.
Didn’t remember a thing, so when he said I was a really good patient I was puzzled?
Then he explained that I could still follow instructions but couldn’t remember it.

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Yes I agree re the sedation. S needed a gastroscopy and sigmoidoscopy in his teens. He was sedated for this. He had to wait until the meds wore off and eat and drink something before he could go home. When it was time to go home, he asked if it was time for him to have the procedures!! He had no recollection at all.

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