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how do you cope?


tulip24
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Hi all,

I'm new to this site. My Dad had a massive SAH on 28th March & is still on NICU, ventilated. They only repaired the aneurysm on Monday.

I'm really finding it difficult. I don't know what to say to my dad. Due to a pre-existing condition, he cannot regain or rebuild muscle. So rehab will be hard to say the least.

I'm trying to stay positive for my mum. But we've had so many ups and downs in this past two weeks already, I'm struggling now.

Help

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Hi Tulip,

It's so hard to know what to say to someone in this nightmare situation. I'm sorry you & your mum are having to go through this. My only suggestion would be try not to drive yourself mad with worry about how your dad will manage with rehab or how he'll cope at home. If you can try to just focus on the immediate - your dad being well enough to come off the ventilator. The rest can follow later. It's often easier to deal with each step at a time rather than let your mind think too far ahead, that can become overwhelming.

I hope there is improvement soon & you and your mum are able to keep each others spirits up while you are waiting.

Best wishes to you all.

Michelle x

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Hi Tulip. Sending a virtual hug to you and your mum.

I read your story in the 'introduce yourself' area. I sincerely hope that today sees some change and improvement for your Dad.

You mentioned that he has had a drain put in, an EVD? I can only share my experience that when mine got blocked and was raising the levels of pressure in my head I was a very happy bunny. Higher pressure is bizarrely quite a euphoric feeling, for me anyway ( I've had this a number of times). Then when the fluid is released either through a lumper puncture or new drain and you then go back to lower pressure it can be the opposite and you feel dreadful. Your Dad may be feeling the effects of this. All you want to do is lie still.

Take each day as a new one. As a nurse you will be able to make sure he's getting the best care. Don't look forward to far and don't look back either, no good comes from that so just celebrate any improvement.

I knew people were with me and never felt alone, I could feel their love. I couldn't hear them, I didn't know them in the early days but the presence was a comfort as yours will be for your Dad.

My prayers and best wishes for you all.

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Hi there, warm welcome to the site, glad you found us.

sorry to hear about your Dad, just chat to your Dad about your day and stuff, I went into rehab it really helped a lot.

there will be ups and downs a lot we've all been there.

take care

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Hi Tulip,

A warm welcome to BTG, sounds like you and your parents have been through an awful lot. Take each step at a time and ensure you have a support network in place to help you through this diffcult time.

I had a drain (EVD) inserted that became blocked on a regular basis, so I think it is probably fairly common.

Take care,

Wem

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Hi Tulip,

My Family were told I would not walk again, and have they thought about putting me in a home.

So glad my family said no way, it's a long haul, I can walk approx 60 to 100 yards and I keep trying to improve.

Keep strong for your Dad, hard I know as when I was in hospital this site helped my daughter a lot.

Now go and smile for your dad and sing to him xx singing is my answer to all x

Best Wishes

WinB143 x

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Hi all,

Thanks for the replies. It really helps.

Went to see dad today. Again he initially seemed a bit brighter, he even raised his eyebrows when I told him I'd brought hand cream in for him. He seemed to be trying to focus his eyes on us at times, but then seemed to drift off.

They told us they are now trying to wean him off the ventilator. He is on stage 2 of 19, but it's a start!!

Also, they have removed the central line from his neck. He's still critical, but it now feels like they are now trying to push him, rather than just keep him alive.

Hard to think that two weeks ago this nightmare started. Time has flown, but it also seems an eternity.

Again, thank you all

hugs xxx

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hi tulip I feel for you as I have been in the same situation with my lin. dad is still in the early days of recovery and you are going to go through two steps forwards the one back lin was on a ventilator for two weeks and had a traciostomy which made lin to look more normal and enabled the airway to be cleaned and breathing easier so please don't fret about it lins Traci was in for three months and soon healed over once it was taken out the evd's are prone to blocking with the blood being drained from around the brain that is a good thing and can be changed very quickly it helps with the absorption of blood within the body and will help with that lin was very vague for about a two months just talk to dad as normal its a nightmare for both you and the family which none of us would ever want to go through but we do get through it eventually honest it also gives us a different outlook on life because of it im afraid you have to take one day at a time sweetheart and there will be the odd step back but remember dad has done the hard part he has survived wishing you all well regards to family take care of yourself and make sure both you and mum take time out for yourselves otherwise you wont be any good to dad take care

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Hi all,

Just to let you know. Dad continues to improve. They were gradually weaning him off the ventilator. When we spoke to the nurse looking after him, she told us he is now breathing on his own, with the minimal amount of oxygen to help top him up. They still plan to do a tracheostomy on Monday however.

He is now in a room of his own, where he was in the main ICU up until then.

When we saw him he was sitting upright in bed, where he has been laid flat(ish) for the past 2 weeks. He was awake & remained a lot more focused than previous. He appears to follow conversation also without drifting off.

His brother came to see him. He last saw dad shortly after he became ill. He was amazed at the improvements he has made. He too like us thought the very worst.

It was so lovely to see my mum`s expression too. She looked so happy & relieved. We were so downhearted the other day. I think she was really struggling & didn't visit yesterday, I think because she was scared & needed a break (which is completely understandable).

I realise that we still have a long way to go yet, but I just wanted to share some good news.

Like my mum says,

"He's a tough old Turkey"

Xxxx

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Hi Tulip,

That's really good news and your Dad is a fighter! :-D .... I can only advise, as to just focus on the day ahead, as each day can be very different.

Drifting off ... well, I did that, but knew who was around me and could hear them talking ... After the SAH, some of us are on quite a bit of medication, so a bit of "drifting" isn't too unusual. :wink:

Can I ask how old your Dad is?

xx

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Thanks again,

Didn't visit today. But dad's brother & sister went to see him & they said he was bright, pointing etc.

Karen: my dad is 70. He will be 71 in July. Which considering his age & pre-existing condition makes it remarkable (well, in my eyes anyway:))

Hope you are all keeping well xxx

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Hi all,

Just a quick update.

Things feel like they have come to a bit of a standstill really. Dad is still on the ventilator & they are still on about fitting a tracheostomy. Although he is breathing by himself, it's not enough to manage on his own. They have now clamped off the external drain & are observing to see if he can manage.

Mum & I went to see him today & monday.

On Monday he was awake, but didn't seem to acknowledge us. It felt like we could have been anyone sat there. He looked at us blankly, then appeared to drift off into a world of his own.

Today he slept most of the time. He did look at us on a couple of occasions, but seemed so sad it broke my heart. He looked so frail.

I know he has done well to get this far, but I WANT MY DAD BACK.

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  • 2 weeks later...

Hi all.

Well, the rollercoaster continues.

Dad was moved back to our local hospital just over a week ago. He remains on ICU.

Things seemed to be improving, with him being weaned off the ventilator. He was managing a few hours on his own.

He seemed to recognise who we were & although tired, managed to stay awake longer.

Today we saw the consultant. He basically laid it on the line. Dad now has pneumonia. Because of the myositis which affects the muscles, they doubt he will be able to manage without the ventilator. Dad keeps pulling out the NG tube, so they are going to fit a peg feed. They told us he is very weak & the prognosis is not good. If his heart stops, they will not intervene.

They are giving him antibiotics & have said they will see what happens.

They also asked if there was anyone who would want to see him, which indicates to me that we are likely looking at the end.

Today he looked so frail & tired. The other day when we went, he started crying. In my 36 years, I have only seen my dad cry on a couple of occasions. It must be so scary & frustrating as he cannot speak & tell us what he is feeling.

Feel so helpless & scared

Xx

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Hi Tulip. Tough, sad and scary times. I'm so sorry Dad has taken a turn for the worse. I'm hoping that things take a turn for the better.

Is he able to respond to written questions ? I think there are boards that are used with stroke patients that help to communicate. Might be worth a try.

His tears are from pain and frustration and sadness seeing that you are all so worried but they're a good thing too, it always feels better in my head after a cry. It releases things.

Just keep letting him know how much you love him. That's the biggest comfort there is.

Take care x

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Tulip,

I know this is a tough time for you, but don't go through it alone. Stay in touch and share your problems, we will do our best to help you through. Good luck. I wish you all the very best. Look after yourself - and your Mum - she needs you now more than ever.

Macca

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  • 4 weeks later...

Hi all,

not been on here for a while.

Well, the rollercoaster continues.

Dad came off the ventilator and also off ICU about 3 weeks ago. He has had pneumonia for the past four weeks, despite repeated courses of antibiotics, he just can't seem to shake it off. Initially he rallied really well. But over the past few days he has gone downhill. He seems really weak, struggling to breathe, not even enough energy or strength to cough. He has fought so hard to get this far. Hate to see him struggling.

Xxx

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Oh Tulip. I'm sorry the steps are so tiny and small. I'm hoping there are some glimmers of hope for you just around the corner.

coming off ICU is huge so that's something worth marking. Sending positive vibes. Hope you're doing ok.

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  • 2 weeks later...

Well, things seem to be coming to an end. We were told yesterday that Dad will be moved to a hospice next week. His chest infection isn't shifting and there is little left they can do. His muscle weakness means that he cannot cough properly & is likely to keep getting infections.

Although it is hard to accept, it's awful to see Dad as he is now. He has fought so bravely, but he's tiring & getting gradually weaker.

Don't really know what to say, knowing it is now a matter of time. Part of me wishes he had gone when he first had the SAH but I'm grateful for the time we've had since.

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