So, a little about me …I am recently retired practitioner nurse caring for my 37 year old son who is in end stage heart failure. He was rejected for heart transplant and given 6-18 months to live. He is still alive but not kicking so much these days . Its been about 5 years since he passed his sell by date - he jokes about sending his ex transplant surgeon a card every Christmas! We get by with black humour mostly. He was evicted from Hospice care, which was ironic , and because I am or was until recently a health professional his heart failure nurse also signed him off from her list. His GP is very clever at medicine and practice management but definitely lacks time and pastoral skills. He never contacts either of us . I feel very alone in all of this. I try to keep positive , take him out and about for a spontaneous trip when he is up to it but neither of us trouble our friends with the deep stuff that really counts. He has some far flung friends, lately managing their professional lives and young children , thank goodness for social media. His wife packed her car and left shortly after he was discharged from the heart transplant unit so here we are. Just getting along as best we can. Phew…that was somewhat of an unburdening. I don’t have much energy to be supportive to others; at the moment, after 49 years of nursing I am still quite burned out and now in my own caring role . Those of you in a similar situation will understand that selfish sounding statement. Covid has made this worse for us , its so sad to see him so anxious about going out, and with his time ebbing away there has been a cruel cessation of the few things left that he can enjoy, a museum, theatre, comedy gig , a pizza out in a restaurant. Take care all of you . Chin up etc
Hello Mandy
Welcome to the forum, you’re in the right place to meet people who understand what you’re living with and how it affects you. It’s nice to see that you’ve managed to keep a sense of humour!
We’re running weekly online meet ups which you’d be very welcome to join. They’re very informal sessions for carers to chat and take some time for themselves. Do come along if you can, sign up details are here:
https://www.carersuk.org/help-and-advice/get-support/online-meetups
Best wishes
Jane
Hi Mandy and welcome,
I’m sorry to read your son was refused a heart transplant. Also that you have both been abandoned by support services. It is helpful and necessary to be able to talk about your situation and share the responsibility.
I’m a Special needs teacher and I care for S who has autism. He is now grown up. I have a similar problem with professionals they either want to teach me to ‘suck eggs’ or discharge us.
I totally get what you mean about care-fatigue and it’s very hard to have been in a caring role as a career and now to be in a caring role whilst retired.
Covid has made life so much more difficult and there seems very little to look forward to at the moment. Does your son enjoy any outdoor activities or does he find them too exhausting now?
It’s good you both know how to joke your way through. Arthur and Ayjay make us laugh on here.
Well, coffee beckons.
Keep posting - we do know what it’s like.
Melly1
Hi Mandy & welcome
Just because you have been a health professional. Doesn’t mean services should have abandoned you. It nice to know there are people you can talk to who understand. Regardless of our knowledge and experience. Carer for you own family member is totally different than a professional one. As you are well aware.
37 is no age at all.
I am glad you have been able to share. How you feel here. This forum is a good avenue to let go. Although some threads may not always receive. A high volume of replies. This is not that people are uninterested. It’s what can we really say. If you look at the views. You will see how many people are reading your thread. I read many threads but don’t always have anything constructive to add. Or do not know how to reply to be helpful. So I only answer one’s I feel I can add some understanding or positivity. Also by you posting you are helping others. Who also may not be ready to share. But might help prompt individuals to share on this forum.
49 years of nursing give yourself a very long pat on your back. You deserve it!!
Oops!!! I meant Albert!!
Melly1
Hello,
I am sorry to read that your son was unable to have a heart transplant, and that COVID 19 has meant an end to the activities and outings he enjoyed. That is very sad. I am not surprised you feel so alone with it all, and also bereft of energy to support others. It seems inexplicable and callous to
me that you are expected to shoulder all of the care for your son just because you have professional experience. It is a very different matter to care for your own kin, and as you say, you are burned out from a long career as a practitioner nurse. Not to mention the surging of intense and painful emotions that accompany such a difficult situation. It seems dreadfully unfair to be essentially signed off from these support systems. I care for my husband who also has heart failure. He is in his seventies, and although he has lived a full life, the sense of time rapidly running out and not being able to do All the things he hoped to is still very acute. He too has felt the cruel sting of social activities being cancelled due to Covid 19. It has had a really bad effect on him to feel that the limited time he has left is so curtailed, and brought him lower than I ever known him to be. The stress of staying safe has been very draining at times. We try and make the best of it, feels like we are groping in the dark at times though. Keep up with the spontaneous trips when you can. We have had some very dark days saved by an impromptu trip out in the car. I am sorry you are having such a hard time. Sending you my best and wishing you inner strength and fortitude in this most difficult of situations.
Hello Mandy ! Nice to meet you. I’m newbie too