Hi, it’s been months since I’ve been here, just getting on with day to day life and trying to care for myself and my Dad. I have Fibromyalgia and Arthritis, Dad has Atrial Fibrillation, arthritis in his knees, high blood pressure, type 2 diabetes, things have been running okay, however Dad recently developed Pemphigoid, pretty nasty rash all over, been back in hospital as he became ill with COVID after being discharged following diagnosis of Pemphigoid.
None of this is the real problem I am having at the moment (apart from running to and from hospital), should be coming home with carer support any time now.
No, the problem is one of Dad’s three sisters so I am here for a rant! About a year ago, she started ringing me in the evening for a chat, which went on for 2 - 3 hours at a time, despite my saying “I have to go to bed now”. She is a self-confessed worrier and in recent months, the calls went from once every few months to every few weeks. Since Dad has been in hospital, she is WhatsApp ing me daily for updates and a couple of days ago, after visiting him in hospital, messaged me: “he seems to like the food in hospital and I think he isn’t eating at home because he is thin and I am worried because he will be coming home soon”… He does eat at home, she had no idea because she rarely sees him. Dad is slim anyway and comes from a family of slim genes (his sister included). I decided to ignore this message (at the advice of a friend) but am now getting daily messages and now accusations of ignoring her. I have been going to bed even earlier as running to and from hospital has been exhausting and woke this morning to find she had phoned at 9.30 last night. I am tired of this, I explained I hadn’t been in touch due to being busy with Dad and that I am taking care of myself by going to bed early whilst Dad is in hospital. Is it just me, or do I just tell Dad’s sister to ‘bleep’ off (bear in mind it is Dad’s sister and Dad has now decided after her visiting him that she is “alright” after years of them having little contact other than family occasions?
Hi @Den54
Welcome back, good to see you. I hear you and really empathise with all you’ve shared - always feel free to rant, rage we’re all here to sit alongside and support you. MANY of us have had ‘issues’ with family members…trying not to echo-rant but there’s LOTS I could share…
I’ll share what’s worked for me BUT please don’t take this as me telling you what to do because each of our circumstances are singular and unique. I hope something I share is helpful.
I tried to align with my Dad about family but he had a VERY strong opinion about how we ‘should’ do things (BIG quote marks on should because in my book its a swear word). He was the eldest of 4, and had always looked out for his siblings. Very principled, proud man. This led to Mum and I implementing his wishes and going through BIG stress, angst and issues
Mum and I are VERY close and when I suggest and explain why, usually we navigate to an answer together. This helps me set boundaries that help us
I orchestrated a 1-email update to all family and close friends (using the blind copy function so we don’t share private email addresses of everyone).
in the email I stated that this is ‘for those of you who are close to us and will understand our need to only receive emails, so that we can conserve our energy and focus on helping Mum recover from xyz’ and at the end of the email I re-emphasised We appreciate your concerns but we would appreciate it if you’d send emails only at this time, as Mum may be resting and we don’t want her to be woken up by the phone, or i may be running errands for us/talking to medics
if someone is being extra pushy I send another more pointed email and make it look like its going to everyone and say ‘I appreciate everyone’s concern, a few of you have been texting/calling but I’m sorry to say that this is taking away my time and energy from focusing on Mum. Please note I will not be responding to texts/calls at this time, as Mum is my focus. I will send a new update via email when I can. Mum is my priority’
Then I mute the whatsapp conversation, some are archived conversations now so I don’t see them in the main thread
All this is how I’ve evolved how to manage communications to certain people, with Mum over time. She’s come to understand why I suggest things now
Like I said - some or none of this may resonate or seem right for you and your dad
In our culture, there can be a big emphasis on family ‘hierarchy’, cultural expectations - so when I was caring for Dad I had extra nuances to consider in his interactions with family, and also my ‘position’ in all of the interactions…NOT fun…which is why I’m SO relieved because things are MUCH easier with Mum.
Thanks for your reply. There are some great suggestions in there and I will definitely be implementing some of them. I don’t think relatives realise the time and energy that goes into caring and top this off with a society that now has constant connection and expects instant replies.
That sounds so like my brother after I had dealt with all Dad’s affairs for years and spent days trawling around for him. Then he had a falling out with me and I was the devil incarnate and my brother was a Saint and could do no wrong (after years of not visiting Mum and Dad and remarrying four times, much to their disgust, yet he was the blue-eyed boy) and he phoned me and told me how badly I had treated Dad and I was terrible the way I had acted… This came from Dad’s dementia driven comments - saying I had starved him when he stayed with us and had threatened him and he even told one person I had hit him… It seemed everyone believed HIM - despite the dementia diagnosis - and not me. That hurts so much. Then there were those who kept telling me what I should be doing without knowing the situation at all and again assuming that everything he said was gospel truth when he couldnt even remember what day it was and one night kept phoning my brother to say there were three men sitting in his bedroom in their underwear and they were all waiting for a train and no-one knew the timetable… Yep - that’s the behaviour of a man with all his wits about him.
It really hurts when you have given so much time and energy to caring and then its thrown back at you by those who have never bothered or simply dont have a F*ing clue.
I would suggest blocking the number on Whatsapp but perhaps message first saying what you are doing and explain that you cannot deal with constant messages because you are exhausted and if she would like to take some of the strain and stresses she is welcome to do so - then suggest how she can do CONSTRUCTIVE things. Perhaps she would like to cook meals and deliver them to your home when he is discharged from hospital - then she can be assured he is getting the standard of food SHE considers appropriate (if nothing else it would save you some time cooking and the cost of food!) You could also suggest that she liaises with the hospital dietician to get an idea of what foods would be best - load her with things to do and she will soon back off!!!
Best of luck - there are none so stupid as those who THINK they know best! CARESPLAINING is the expression - telling you how to do the job you have done for ages. I regularly get that from a “friend” and I turned on him recently and asked when he last Cared for anyone. He claimed he cared for his mother and I pointed out that was 25+ years ago and his Dad did the caring and they lived in their own home and Martyn only visited every few days so it was not CARING… He shut up after that.
YEP!!! @Den54 I’m glad somethings resonated and helped…
We coined the phrase ‘Caresplaining’ - mansplaining is better known than caresplaining…
I used to explain away all these well intentioned good hearted - ness of things
NOT now…
It’s understandable that people worry, are concerned and want to help BUT that DOES place more burden/work/emotional stress and uses up our energy that we don’t have…
Everyone wants to be heroes in a bad situation - they don’t realise that they are actually becoming the villain in the story because they’re making more work for us having to justify/explain/qualify the decisions WE’ve already made…So it’s good to highlight this to give them a chance to redeem themselves/be directed and guided by you and your Dad’s wishes
I have a BIG soapbox on caresplaining because many people think they are ENTITLED to know/be informed/explained to…like in a company…like in a hierarchical cultural system BUT entitlement isn’t something we need to pander too, if we realise it’s the dynamic that’s happening…
BUT personally when someone doesn’t have an empathetic bone or gene in their body, when they are ignorant, or simple choose to put themselves over us, our guidance OR the needs of the person we care for…I can only pity them and what they do, because it demotes them in my estimation of 'friendship/family-love for us
I’m HUGE on protective instincts and healthy boundaries…and it’s quickly activated!
slowly stepping down off soapbox
Sorry to hear you have been through a similar situation - Dementia is especially hard, my mum had Vascular Dementia before she died.
Thanks for your suggestion of giving Aunty a to do list, I did actually think of asking her to bring a casserole when/if she visits when Dad is home. Good suggestion about the dietician too. I may just end up leaving WhatsApp altogether, it would be easier as Dad’s other sister sends just regular texts too, I could send the same text to both if I need to reply.
It is astonishing to me that the person who does most or all of the caring ends up becoming ‘the bad guy’ and yes it does hurt terribly.
My Aunty and her siblings never had to do any caring for their parents as my paternal grandmother died suddenly from a heart attack when Aunty would have been in her 30s, then paternal grandfather died around 10 years later in his home, my Dad found him when he went to visit. Yet somehow Aunty is an expert on caring for a parent.
Good for you for telling that friend of yours and thanks again for the advice.
Thank you. I have now deleted WhatsApp and diverted all of aunty’s calls to voicemail. Still, she couldn’t help sending me one last WhatsApp to say Dad needed a shave. He’s had one since she last visited and said he doesn’t want me to bring his shaver to hospital again as he’s coming home. No doubt that won’t be enough for aunty when she visits him tomorrow. Next time I post on here it may be from prison for strangling aunty.
Oh Den - how many of us have felt just like that - perhaps we could have a prison just for carers - just think how peaceful we’d all be - and SO organised!!!
@Den54 Good to hear from you again - the others have given great advice, so I’ll keep quiet!
One of the strange things about this site is that certain words pop up as “trigger” words that require moderators to check if the post is ok. One of yours came up becasue you mentioned your Dad’s heart issue. I won’t use the actual word her as I don’t want to trigger the alarm…
Funny thing, your prison comment didn’t get picked up, which suggests that you can’t er, “a tack” someone, but you can wrap your hands round their throat and it won’t get noticed…weird. I’m going to have to think about that one…
That is very strange. I did think about the prison comment and thought about editing and putting ‘just kidding’ after it so anyone reading would know it was said in jest, which most reasonable people would realise anyway. I suppose medical words, which I am guessing is what triggered it, do require checking.
BUT entitlement isn’t something we need to pander too, if we realise it’s the dynamic that’s happening…