I am a robot!

[ManjiB]

As I write this I am not feeling too good. For the last hour or so I have been having doubts and feeling emotions I cannot describe and it all stems from the fact I am primary carer for my Mum and she is PEG fed.

Up until now, I have accepted this task and performed it dutifully but recently I read something that got me thinking. A fellow member Michelle @Mich-mm has been sharing her feelings about having a PEG and how she feels dehumanised, and so now I am wondering what my Mum might be thinking or feeling.

Everyday whether she likes it or not, she gets food, water or medication pumped into her tummy (or on her case the Jejunum) whether she likes it or not. I was told by a nurse that each time I do this, I must inform Mum what I am doing and why and effectively seek permission to pump the food, water or medication as technically this is an invasive action. Whilst I have been doing this religiously, I am not sure if she has ever acknowledged the same and granted the permission, but by the fact I have told her, it is deemed acceptable. And until now, it is something I have accepted I must do and so I have not had any feelings of guilt or discomfort. But not any more. For the past two or three hours, I just can’t get this out of my head.

I do these things in the belief that this is what she would have wanted, but how do I know? What if it is not something she wants? Does she even know what is happening?

I know there have been occasions when I have been giving her her food or water she has shown signs of discomfort and to be fair I have on those occasions stopped, but even that left me feeling bad because i was depriving her of her food or water. I have even brought it up in conversation with my siblings and Mum’s dietician and comparing it to the practice of force feeding ducks or geese through a process called gavage. At times I have felt this is what I have been doing especially recently when she went through that terrible spell when her stomach lining had been damaged through long term use of Asprin.

So who is the real robot? Mum or me?

This is not a good feeling and something I don’t recall ever feeling before. Is self doubt creeping in? It’s true, right now I am coming out of what might have been the most difficult month or two possibly in my whole life and so I might be emotionally charged, but even knowing that doesn’t help especially when I myself “am forced” to pump medicines into her tummy that I am certain she herself would not be taking. That is the saddest part of all.

No doubt, being a robot, this is a temporary blip and I will carry on regardless and know “I am doing the right think, or acting in her (Mum’s) best interest”.

[/journal entry]

[Mich-mm]

@ManjiB i’m so sorry that my post and words have caused you so much emotional turmoil, of course you should continue to provide your mum with ‘feed’. It has after all kept her alive for many months. You are following the instructions of the ‘experts’ who don’t always consider quality of life. I’d love to know as i asked in an earlier response if she is still taking teaspoons of water?

[DeAnn]

I just want you to know you were heard. It has been quite some time since I have been here. I am familiar with mich, when I don’t believe you know of me.

@Mich-mm this is a place for you to be able to say what concerns, how you feel, share what’s working, and find support. You said absolutely nothing wrong, however, I also understand

Feelinghowever, I also understand

However, I also understand feeling bad about bringing in idea to someone else’s mind.

This is a rough place for anyone to be making decisions. My heart is with you. I am glad you stop if you feel she is uncomfortable. I suspect you can trust your intuition. In honesty, what else do you have to listen to, if she cannot signal you in some way for herself? Instinct is generally correct, especially with someone you know well.

[Chlodog]

@ManjiB

Up until now, I have accepted this task and performed it dutifully

…….and you will continue to do so. Your an amazing caregiver. Not everyone is cut out for it, but you’ve got it. Maybe your overwhelmed and probably even fatigued. We get it. Get some sleep, take a break, do something for yourself. Tomorrow is another day. Peace.

[EmeraldEyes]

The thing is, your mum cannot communicate clearly enough to truly be understood. And there is only one other alternative and that is to starve her to death. Now that’s clearly not an option at all! Besides, that would be seen as abuse and neglect in the eyes of the law.

You can only do the best that you can under exceedingly trying circumstances. And, at the end of the, you really don’t know what your mum would want. That is only based on her past. She hadn’t had a stroke then. Did she ever have a life threatening illness in her past, where she could have/would have refused any medical intervention? When your life is at stake, past beliefs and principles can go out the window.

It reminds of the new mums to be who want an all natural birth. How quickly so many of them change their minds about pain relief once they are in labour.

There’s no point in you tying yourself up in knots of doubt, you’ll drive yourself mad! And that won’t help your mum at all now, will it?

I did a lot of that with my father-in-law with Alzhimers. Thankfully we had all my siblings to talk things through with because we’d already been through it with my own mum. So it’s good that you can come on here and talk it out. It’s the best way when you can’t see the wood for the trees, what’s right or wrong.

You’re as strong as your mum, but everyone has their breaking point. Don’t let these doubts be yours. What is right is that all you’ve done to date has kept your mum alive and as well as she can be. You make her happy, make her laugh, make her sing…as well as shout. So what’s there to doubt about You’re doing good, be proud, I’m sure she is

Lorraine

[Bobbi]

I have nothing to say but feel that this thread is producing useful discussion.

I wouldn’t presume to take part but feel you need to know that saying what you truly feel and making attempts to find a way through the dilemmas together is a path towards improvement.

There is still much to be learnt about the effects of stroke and methods of treatment. Open discussion amongst folk who have this experience can bring things to light that are not immediately obvious.

This is a great place to have these discussions. They are open, recorded and available. So, if this is an issue for you, don’t hold back.

keep on keepin on

[Mrs5K]

@ManjiB i think @EmeraldEyes has sais everything I would say.

Feeding your mum via the PEG is what is keeping her alive. You have no choice and I am sure, if your mum could communicate with you, that she would be ok with it.

I think, right now, you are probably exhausted. You have had an extra difficult few weeks and it is bound to take its toll.

Be assured you do an amazing job. Your mum is no doubt very proud of you. You should be proud too.

Wipe the doubts away. And don’t forget to look after yourself too.

Ann x

[pando]

A good sign that you are questioning yourself. Consider that she might be taking certain meds just to please you ! What I can say is that there was an abyss between what I wanted and what the hospital staff wanted. My wife met me half way, and the more things continued the more she came round to my way of thinking. Yes, I could speak after a week ; no, speaking was not useful ; I had brain fog from dehydration. Well, the unspoken truths and deep understanding go well beyond verbal communication.

You are questioning yourself for a very good reason. You’re doing your best, and there’s tremendous responsibility in that. But if you asked your mum what she would like to do, the answers would frighten you, and possibly make no sense. As long as you keep doubting and questioning yourself, I feel that’s a good thing. It shows you care about making the right choice ; or at least the best choice given all you’ve understood about the situation.

Keep up the good work, ciao, Roland

[ManjiB]

This is to thank everyone for the kind words of support and advice which I really appreciate very much as always. You are a wonderfully supportive collective and your words and wisdom and generosity have helped so many and I would like to thank you all again.

Michelle - @Mich-mm, please do not think for one moment you have done anything to upset me or caused emotional turmoil. In fact, I would suggest you have done the opposite - you have, by sharing your experiences and thoughts allowed me to relate to what my Mum might be going through. This is one of the reasons I am on this forum as it allows Me to speak on behalf of Mum and for others such as yourself to speak to me for Mum. Through you and your experiences I can better try to understand what Mum might be thinking or trying to say. So thank you from the bottom of my heart for helping me release the emotional turmoil that may have been brewing up and which needed releasing. I feel so much better for having done so.

Just to be absolutely clear, nothing I say on this forum is ever intended as criticism, blame or any such negative connotations. It is possible, sometimes, my choice of words and perhaps in my haste the structure of the message might be construed as negativity, but it not so.

And finally Michelle, Mum was having up to a small glass of water before the unfortunate events. Since then we are in the process of rebuilding and repairing the damage and as this set back (and that is all it is - a temporary blip) will take longer to put back on track. Mum is strong and so are we.

Nobody should feel bad about anything they post on here. This forum is here to support and encourage and to help people feel good and to see hope and light at the end of the tunnel.

Please - no more talk about people making people feel bad or causing emotional turmoil. Speaking for myself (and I know we all react differently) I take any feed back as good feedback. There is NO bad feedback.

I wish everyone a lovely day and with this message I send you happy vibes across the ether.

Namaste|

[Mich-mm]

Phew @ManjiB you are a loving and dedicated son/carer and I believe you’ve done so well.