Hi all , I’m at the beginning of my mums ICU journey and I’m so glad I came across this page .
Up until last Friday my mum at 76 had a few health problems as you would expect but was still the main carer for my dad who has Parkinson’s .
All last week she was complaining of tummy ache and to cut a long story short on the Sunday evening she had a 7 hour operation on her bowel resulting in having a stoma . She was then placed in ICU to recover .
Monday she was extremely groggy but managed a croaky hello on the phone - Tuesday we visited and she was alert chatty and showing us her war wounds but her blood pressure was low - today we’ve been for a visit and she’s in extreme pain and on morphine , sleepy and delirious . Her blood pressure is still low and the top line on the monitor has hardly got any wiggles on (please excuse my medical term !)
It’s really shook me up seeing the difference in her as I thought the worst bit - the operation - was over
My dad is now also in a total state and I have been with him 24/7 . He is out of routine confused and really teary ..and in and out of bed every couple of hours which due to his mobility issues is an accident waiting to happen so I have decided to put him in respite where I know he will be looked after ..
I know it’s the best thing so why am I feeling so much guilt ?? I haven’t slept for days and plus the worry with mum ..
Any advice greatly appreciated
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Exhausted247
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hello Exhausted247, I just wanted to drop you a message to say I am sorry for all you are going through, I was the patient so can’t fully understand how you must be feeling, but I do very much believe that it’s harder for loved ones in these early days, days filled with so much worry, practical issues and lots of fear. Guilt is an emotion you could really do without at the moment so please try to be kind to yourself. Keeping your dad safe by respite care is a good thing, for all concerned . You can’t be everything to everyone at the moment and you have to share the load where possible. I think everyone would agree with me that the most important thing you need to do is meet your own basic needs first. Rest and sleep is vital as is eating some proper food, not endless canteen sandwiches. Get some fresh air when you can, a walk around the hospital grounds will really help mentally. Have a notebook and pen handy for when questions pop into your head that you need answering, also for writing down information you are given, it’s difficult to remember it all. Most hospitals provide free parking for relatives of ICU patients, ask the staff for details. I can’t give any sort of medical suggestions but keep talking to your mum, keep telling her where she is, why she is there, reassure her all the time that she is safe and being cared for. Reassure her that your dad is ok. Talk about what time of day it is, you lose all the markers of what time of day it is and that can be really odd. Touch her lots, it’s such a comfort, my family pampered my body by massaging moisturiser into hands, arms, legs etc everyday. A little spray of her perfume might be nice, it was for me once awake from the coma. Tell the staff about your mum, who she is and what kind of life she has, interests and hobbies etc. I hope you start to see improvements really soon, there are no such things as silly questions in these situations, ask everything you need to know. Have you found the critical care support network on Facebook? It’s brilliant for support and advice etc. best wishes for your mum and family
If you have any questions about your mum's stoma, or stoma care, I would be only too happy to try to offer advice. I lived with an ileostomy for five years after bowel surgery and I learned and discovered a few things along the way. I had a dedicated stoma nurse that I could visit and I assume one has been assigned to your mum.Best wishes. Take care of yourself.
I hope your Mum is in better shape today. Recovery is rarely linear. Look after yourself!! Get some sleep !! - worry resolves nothing - you will need all your wits about you in the time ahead.
Don't feel guilty, if a health professional risk assessed your father, they would immediately put him in for respite for his own health and safety. Plus when your mum gets better hopefully she will need full time care too till she is back on her feet. I was carer for my husbands uncle, working full time had 3 kids and it nearly killed me health wise. You need to prioritise your own health now as you will still be needed a lot during your mums recovery. Be firm and loving to your dad and get in touch with respite services immediately
She was in an induced coma for days, and I spent 12 hours a day at her bedside, so I can empathise with you a little bit, but unlike yourself, I didn’t have anyone else to be worrying about, as you do with your Father. Believe me you have taken the right steps to put your dad in respite, where he will be very well taken care of, to leave you to look after your Mam.
Few years later, I penned the below little poem, not sure if any will resonate with you, but I know it was hard on me trying to deal with it, as it came as such a shock, as it sounds like it has with your Mum.
I know it’s hard to do and easy to say, but please try to stay strong, as others have said, get plenty of rest, look after yourself too, it will be very draining on you mentally, so you will need the rest. Try and find time to do things for yourself too and as much as you’re going to find it hard, do not feel guilty in any way, you are doing a great job and best wishes to your Mum having a speedy recovery, because being at home is the best tonic.
SITTING BY YOUR BEDSIDE IN ICU
Who’d have thought at the beginning of that day
Just how long in that hospital you’d stay
Sitting by your bedside in ICU
Not knowing if you’d pull through
Watching all the nurses strive
Straining to keep you alive
You will never know the feeling
Or the relief just to see you breathing
The long hours sat by your bed
You’ll never know the thoughts that went through my head
please don’t feel guilty about your Dad. You know that he is safe and being cared for. If you’d carried on as you were you would have gotten to such an exhausted state that you wouldn’t have been able to care for anyone and you need your strength right now to deal with your mum in ICU. I know it’s bad for the patient in ICU but it takes so much out of the relatives. I know from past experience the toll it took on my Mum Dad and Sister while I was in ICU. I was oblivious for those 6 weeks but looking back now I really don’t know how they coped. During a really bad period a nurse said to my mum that it’s not uncommon for patients to get worse before they get better. You need to hold onto that. Your Mum is being looked after by the absolute best medical professionals and will be getting the best care ever. Please have faith. Sending love and prayers to you and your family x
thanks for all of your lovely comments , just thought I’d give u an update . My mum may have to have another operation as her bag isn’t working as well as it was but she is out of intensive care and on a normal ward right now . I put my dad into respite only to find out today he has had a fall and is also in hospital .. his infection markers are high and they want to keep an eye on him . Just trying to take every day as it comes but it’s so hard right now ❤️❤️xx
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