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.