The effect of caring on the carer that you may not know

Hi all
I am a carer for dad. Today for the first time I wanted to write down my thoughts, probably as therapy. After finishing writing it, I thought it may be worthwhile sharing it with others so I searched google for carers forum and this was the first website that I saw. Anyway thought I share it with you guys. You might find things here that resonate with you. Otherwise it is a selfish act of self therapy by me so I apologise :slight_smile:

Below is my thoughts which I just wrote down

Caring for a loved one is the ultimate act of altruism, unless you want to go all evolutionary and ruin this rather noble idea by believing that it is in fact an act of selfishness as it gives you the best chance of survival presumably because otherwise you yourself won’t be cared for, or, worse, attacked viscously and taken a part by those other even more altruistic people reducing your chance of survival.
Putting the ideas of evolutionary scientists aside (including presumably myself as I studies medical genetics), it is by most people believed to be a very selfless act. This is because in caring for someone one sacrifices the most precious commodity that one has, and that is our freedom. To me Freedom equals Life, because freedom means to be able to move so without freedom we are nothing but lifeless logs and devoid of life itself.
As a carer I often wish others could see that for carers like me, freedom, though not completely gone, is scarce. I want them to know that as a carer, as long as I am with dad, two situations can be happening. One is that I am helping him out do basically every daily activity a human performs ; walking, eating, drinking , getting dressed, going to the toilet, adjusting his buttocks on the sofa, cleaning his mouth, putting on his glasses and so on and so on . The rest of us, of course don’t focus on these activities as we take them for granted but each of these rather banal activity, which we so naturally performs become pronounced in the mind when you help someone else perform them.
The other situation may sound like it should really give you a rest bite from caring is when he is resting or even sitting down, perhaps watching TV (which he can’t really as he has visually severely impaired). But in that too you are totally imprisoned. Because here you have to be mentally focused on him, and all the time, in case he chokes or needs something or is not sitting comfortably. You have to watch for signs, signs of discomfort which may signal an illness or just simple discomfort which he can’t communicate (dad also has dementia).
When he is asleep too, even if you are sitting in the room next you are always alert in case he wakes up and tries to walk unaided or coughs too much. In short as long as you are at home with him, the vast majority of your capacity, physically and mentally is focused on him. So it is not only that you are actively caring for him that is hard, it is the inability to be free. This is the aspect of care which I think might be lost on others.
I never forget my sister shouting at me, in the heat of the argument that I don’t do much anyway, because when I am at home, dad is wither awake and eating or asleep. I wanted to tell her all of what I have written above but unfortunately I am the really bad at expressing anger. I just shake, my heart pounds fast, my voice breaks and overwhelmed I just blurt out simple incoherent self-defence which I don’t really think convinces her. And as we all know, if you can’t express yourself there is little sympathy out there. It’s almost that people want to believe that you are happy and not affected and are glad when you are unable to put together a convincing argument as it makes them feel less guilty.
I’m afraid the rest of my thoughts aren’t any more uplifting
You would think, then, there might be some silver lining in being a carer. For example it might make you become attractive to women. I often joked to my friends when I lived in Switzerland (before coming here and leaving my bachelor, care-free life), that I am going to care for dad mainly because it will make me more attractive to girls, ‘ so handsome and yet so caring’ they will say . This was of course a joke but as we know behind every joke there is at least a good portion of truth.
Alas this was also not true (or was true, if I knew it would be the case and was merely trying to hide it with the joke). Unsurprisingly most girls don’t want to commit to a relationship with a 41 year old who lives with his dad. And there is the issue of dating and intimacy, bringing a girl home isn’t really on the cards. For a start often I have to wake up in the middle of the night to attend dad. Then it’s the early mornings when my sister visits to help out (carers come too but I care less about them – sort of speak). Speaking of relationships it occurred to me only tonight that caring means stress and stress means unhappiness and as well know there aren’t many girls who are attracted to sad men. So like a double edged sword, caring not only makes you sad but this very sadness removes the reprieve of a relationship as sadness itself makes you less attractive hence no relationship hence more sadness.

But of course, ultimately I care for dad because I love him and as love goes, it doesn’t really allow for a risk vs benefit calculation. It is illogical, now that, evolutionary scientist can put in their pipe and smoke it.

Well said

I don’t live with my mum but am hyper vigilant a lot of the time - waiting for the phone to ring.

It’s the lack of freedom to just do things

Dear Aryan
This sounds like a difficult situation for you, the efforts you are making for your dad are admirable but its important that you also take time for yourself too. I’m not sure if you have seen our online meet ups on our website, we’re currently running a series of various sessions for carers to get together, chat, support each other and share tips and advice. Many of our carers have said how useful they found the sessions as its given them a chance to speak to others who understand their situation. I’ve attached a link to our site, we’re running two weekly meet ups, the first is our care for a cuppa which is an informal get together usually on a Monday afternoon for an hour or so. We are also running more fun sessions on ranging on anything from yoga, to learning a dance, to speakers giving a talk. Please have a look at the two links below and see if any grab your attention, we would love to see you there and there’s no pressure to share anything you’re not comfortable with.

with all good wishes

Hi Aryan

Your post is so spot on…

It’s the lack of freedom that we have.

Freedom is something non carers take for granted.

As much as you love your Dad, do what you can to get some freedom back.

It’s even worse for parents of a disabled child, a life sentence.

I’ve only been a carer for the past couple of years. I really miss the freedom I had before I became
a carer. I know some people have it much worse than I do, and I do get some help from family members,
but it’s never really enough.


Hi Aryan

Welcome to the Forum, I hope you are finding it interesting so far.

Just wanted to highlight that we are currently running Forum Focus, an opportunity for Forum users to hear more about Carers UK’s work.

Find all the posts here: