Feeling Lost

[Smudge2087]

Hi everyone, I am new here and not sure what I should be doing. I hope, maybe one person can give me some advice..

A very important friend recenty suffered a brain hemorrhage. When it happened we were living in different countries and I wasn't aware of what had happened until 36 hours later when he was found by emergency services. After being taken to the hospital he went straight in for surgery and his sister was keeping me updated. His blood pressure was very high and the brain swelling higher than doctors had hoped after surgery. Initially they told us to prepare for him never waking up. He was actually brought out of a medically induced coma after about 1 week and progress was slow but promising. He was finally concious, moving his eyes but not focussing on anything, later there were some arm and leg movements and later some hand squeezing. A few days ago he was also answering yes and no questions with hand squeezes and opening his mouth to talk, although there have been no words yet. He has been very fatigued and sleeping alot.

Yesterday family were told he was unconcious again but were unable to explain why, and they had found an infection in his catheter which is being treated with anti-biotics.

I have been talking to his sister who has been giving me daily updates, but she has recently stopped talking to me, with no explanation of why. I assumed she is busy, worried, stressed, overwhelmed and needed space so I didn't contact her. She had previously told me that only family could visit him in the ICU which was understandable. After he was moved out of ICU I asked if I could visit and she said that he needs to use his strength for recovery so it was best not to visit yet; again I completely understood. I have now found out that other friends have been visiting with him. She has however still not contacted me in 9 days and I can't, nor do I want, to push her. Other friends have been keeping me as updated as they can.

I don't really have a support system I can lean on at home and I'm struggling with the lack of information and playing the waiting game that I guess most of you will have gone through. If anyone has any advice or information of the best places to read up on things I would appreciate it, so much.

We all thought the slow progress he was making would just continue and this feels like backwards steps now. I don't really understand what is going on and I'm not in a position to get information from anyone. I don't want to push his sister by asking how he is or why she has ghosted me but she is my main link to him right. I just feel stuck.

[Millys_kitchen]

Hi there, your post spoke to me so i thought id share one, limited perspective. My partner had a massive haemorrhagic stroke last summer. His condition was similar to what you describe for some months.

It is very difficult but in my experience waiting game is the only way. I am happy to hear of your sympathy with sister and not hassling her. For me most stressful was everyone contacting me for info when I just no longer had energy to deal with that and no meaningful news of improvement to communicate.

Visiting is also very hard when the person is not really 'there' yet. My partner doesnt remember visits from 1st month at all and even after very hazily. He also has said now that in early months just wanted to be in quiet, not company or conversation as brain was a swirling typhoon and stimulation can make it worse.

Progress in our case has been slow. It took about 2 months to be able to have limited few word conversations but even so he was in his own world of confabulations and conspiracy theories for many months as brain was rebuilding lost connections. Now 8 months later he is able to speak, able to take some steps, long term memory is back but it is is still early days in many ways. He is still in hospital but has now been returned to a local hospital from a specialist neuro unit.

He is not quite the same person but for many months now we have had a chance to rebuild a relationship and trust. Central to it has been for me to lose expectations of past and learn to really listen to him and communicate in ways with work for him now (limited people, noise, stimulation).

It is also in my view in the long game where relationships are tested. Some of his friends have fallen by wayside (after initial months of constant messages and vague but meaningless offers of support), others have stepped up as real friends that care and are willing to start afresh despite difficulties created by paralysis and cognitive challenges. If you cannot see your friend now, you will have plenty of opportunity to be there to support them through the difficult months and years ahead. That is where your care for them will have a chance to shine through. I feel for you and all in the situation. But also have strong feeling that you will be the friend that will be there 6 months in, a year in, 10 years in.

On what to read, if you can find out what kind of condition he had, I would read into the condition. Also there are wonderful books out there, e.g. on SAH strokes and effects on person. Someone here recommended Mindfulness and Stroke by Mardula which has been a real eye opener to me and an insight into how to and particularly how not to communicate with my partner.

Thank you for being such a caring friend! I wish you all the best.

[Smudge2087 in reply to Millys_kitchen]

I want to say thank you so much for your kind reply. It made a huge difference to my thought process.Devastatingly my friend died yesterday.

I hope he knows how much I loved him.

[cat3 in reply to Smudge2087]

I am so sorry for your sad loss my dear. Maybe an explanation for the silence from your friend's sister ?

The heartache of a loved one's death is devastating ; something only the passage of time can take the sharp edges from. You mention a lack of support, which is an extra sadness. Please come back here if you think talking might help. Cat Xx💐💮