Gem91 Posted January 13, 2020 Share Posted January 13, 2020 Hello everyone, I can’t actually believe I haven’t thought to look and see if there were any forums or support groups on SAH’s before now! I’ve had a browse through some posts (it’s past my bedtime but after visiting dad today my mind is on overdrive) and I’ll definitely need to have an in depth read tomorrow, you all seem like such a lovely bunch. My dad had a catastrophic SAH nearly 9 weeks ago. I actually can’t believe he survived but he’s still here plodding along despite many complications, vasospasm, a tracheostomy and recurring infections. He’s been ‘awake’ for about 7 weeks but neurologically hasn’t made much development since then. I don’t even know if he knows I’m there. Some days he seems more present than others. He can’t speak yet, or respond, or indicate he understands anything. The last 2 weeks he’s been a bit more responsive, turning his head more, moving his left hand, looking around, if you make a loud noise he sometimes looks towards it. I know it’s a long, long road and everyone recovers at their own pace, and it’s really impossible to know how each individual will recover if at all. You try to figure out what the next step is but all the doctors can (understandably) tell you is “we have to see how he goes”. I’m really struggling mentally with it. We’ve had a difficult relationship but at the end of the day he’s my dad and I love him, it just adds to the heartache of it all. That on top of trying to travel up regularly (I live 2 hours away so I’m only managing once a week), protect him from greedy family members, trying to make the right decisions and asking the right questions for him. It’s a lot of pressure. And this may sound absolutely terrible, but in the state he’s been in for such a long time, I wonder if he doesn’t get better then what was the point of all this treatment? Would it have been kinder for them to have let him go? And then I feel terribly terribly guilty. Even though I know it would be his worst nightmare. How did you all cope when your loved one was in hospital and the outcome wasn’t clear? How did you stay strong? What got you through? If you got this far, thank you for taking the time to read my ramblings Have a great day Gem x Link to comment Share on other sites More sharing options...
weedrea Posted January 14, 2020 Share Posted January 14, 2020 Welcome to the forum. I'm not sure I can give you any advice here but I know others who have been in similar situations will. Just wanted to say 'hi' and thinking of you as you go through this difficult time. A x Link to comment Share on other sites More sharing options...
Louise Posted January 14, 2020 Share Posted January 14, 2020 Hello there Warm welcome to the site, glad that you found us. So sorry to hear what your going through it does take time and every day will be different but please don't give up hope... I cant answer your questions on how to cope I'm a survivor but there are carers/family members on here that will be able to help I'm sure. Try and have time for 'yourself' know its hard but without the strength of our carers we'd be lost... Take care. Link to comment Share on other sites More sharing options...
subzero Posted January 14, 2020 Share Posted January 14, 2020 Hello Gem Also a warm welcome to BTG. So glad you have found the site and you will find support from reading the wealth of information contained within the various forums. Our members will also try and help with any questions you may have. Being faced with your dad having survived the massive trauma of SAH is certainly a daunting prospect. SAH is not a condition that is widely appreciated until it hits someone near to you. The medical specialists who have cared for your dad are correct in as far as they have stabilised the initial trauma, but the extent of brain damage only becomes apparent with time as these agonising days weeks and months progress. You are right in saying that it is so, so difficult to be so helpless as you watch for any signs of recovery. Never give up hope. You dad has survived and he will fight to recover. The body can be extremely resilient. Please be patient. I appreciate that your situation has the added aspect of your relationship with your dad being somewhat `strained`. Again this is not unique and there are other members of BTG who have been in similar circumstances with either parents or spouses. He does need your support at this time. He may not respond much but it is likely that he can hear you speak. It is important that you look after yourself during your dad`s recovery. The long term nature of SAH recovery requires care by those family members who want to be involved. I hope you can discuss the practcalities with the other family members. As you say, each survivor`s situation is different. I wish you and your family well as you come to terms with dad`s brain trauma. Subs Link to comment Share on other sites More sharing options...
paul99 Posted January 19, 2020 Share Posted January 19, 2020 Hi Gem I'm sorry you are going through this nightmare I went through the same nine years ago my lins story is within this carers support under my darling lin never give up after eight years lin got what she needed and things began to work in her favour I spent every day with her because I was lost without her unfortunately things went wrong later but she did make progress and with the right help I think dad will make some form of recovery I have just come back to btg after suffering some major health problems and I will check in daily to see how things are going you can always send me a message and I will answer if I can You sound youngish so I hope someone is supporting you chin up and never say no, good luck Link to comment Share on other sites More sharing options...
Winb143 Posted March 26, 2020 Share Posted March 26, 2020 Hiya Gem, People were ready to put me in a home I spoke and remember nothing. I remember talking to my Mum who was dead ??? same with Dad . Mum swam away from me ??? all in my mind or perhaps they were there. As my Dad said I can't talk to you love your Mum will kill me. My sisters sang to me and were good as it helped my Daughter after about 4 months I was sent to a hospital nearer home and I had water/hydrocephalus on brain..had a shunt put in and sang to a nurse when I awoke so..Your Dad is in there like I was ..Sing to him make sure his catheter is empty if he has one...Sing to him and see if he knows the words ..keep talking to him took me an age to recover but I did . Good luck to your Dad and all of you ..we get a lot wrong with us after so aftercare is important for us ..Our memory comes back slow but sure ..Wishing You Dad all the best and make sure he is getting looked after okay xxxxxx Good luck to Dad xxxxx Link to comment Share on other sites More sharing options...
Gem91 Posted March 26, 2020 Author Share Posted March 26, 2020 Hi everyone, I'm so sorry I didn’t realise I’d had so many people reply until I’d seen Win‘s comment come through on my email, the notifications must have gone into my spam for some reason. I'm really sad to say that after 4 months of fighting, my dad contracted the coronavirus last week while in hospital and passed away two days ago. Since my original post he hadn’t really made any progress neurologically, but he was hanging in there. This sadly proved too much for him, but he’s no longer suffering. Due to the virus, he wasn’t allowed any visitors whatsoever, so we couldn’t be there when he passed, we can’t see the body and we can’t even give him a proper send off. Losing my dad in the midst of a global pandemic is proving very surreal. Because I haven’t seen him, I feel like he’s just still in hospital. I’m sure it will feel more real in the coming weeks. I really want to thank you all for being so kind and taking the time to reply. Our story has had a sad ending, but all the hospital staff who cared for him were truly amazing and did their best. During our time in the neuro ward I saw many other people make remarkable recoveries, so it just goes to show that there is hope after brain injury. I wish all of you the best, Thank you so much Gem x Link to comment Share on other sites More sharing options...
Skippy Posted March 26, 2020 Share Posted March 26, 2020 Oh Gem, I cannot express how sorry I am for your loss and under these awful circumstances. I sincerely hope that you manage to give your beloved dad a good send off in the weeks to come. Thinking of you all at this time. Much love and many hugs xx Link to comment Share on other sites More sharing options...
subzero Posted March 26, 2020 Share Posted March 26, 2020 Hello Gem .... also so so sorry to hear that your dad has passed away amid such immensely challenging times. Please accept my sincere condolences and I hope you and your family can find solace in the many good times you shared with dad over the years. Take care and keep strong. Subs PS. So glad that Win made that contact with you which made you aware that the BTG family were there for you since his SAH. Link to comment Share on other sites More sharing options...
Karen Posted March 26, 2020 Share Posted March 26, 2020 Gem, I so very sorry for the loss of your Dad .... My heart goes out to you and your family. I can't find the right words and all I can do is send you all, much love and know that I'm thinking of you. xx Link to comment Share on other sites More sharing options...
Super Mario Posted March 26, 2020 Share Posted March 26, 2020 Gem, my sincere condolences to you and your family at this difficult time. Link to comment Share on other sites More sharing options...
ClareM Posted March 26, 2020 Share Posted March 26, 2020 Sad sad news Gem at a sad sad time. My thoughts are with you and your family xx Link to comment Share on other sites More sharing options...
Tina Posted March 26, 2020 Share Posted March 26, 2020 Gem so very sorry for the loss of your Dad. Thoughts are with you and your family at such a difficult time. Sending much love and hugs your way xx Love Tina xx Link to comment Share on other sites More sharing options...
Winb143 Posted March 27, 2020 Share Posted March 27, 2020 Oh Gem So sorry for you and Family and there was me blurting on..Sorry for your loss Gem. Think I'll shut up but wishing you well xxxxxx Link to comment Share on other sites More sharing options...
paul99 Posted March 27, 2020 Share Posted March 27, 2020 Gemma I'm so sorry to hear dad passed away words cannot express how you feel, but remember your dad before the strain took hold and remember him in the good days. My thoughts are with you and the family, please look after yourself that's the main thing to hold on to. Will pm you. take care hugs and cuddles from all of us to you xx Link to comment Share on other sites More sharing options...
Louise Posted March 27, 2020 Share Posted March 27, 2020 Gem, I am so, so sorry to hear the news, my thoughts are with you at this time, and more so in this time we're living in.... sending you big cyber hugs. take care. xx Link to comment Share on other sites More sharing options...
Daffodil Posted March 27, 2020 Share Posted March 27, 2020 Gem, I’m so sorry and hopefully you will be able to start that grieving process but this strange time is changing normals for everyone. Do find quiet time to sit and sit and reflect on happier times with Dad. Let the tears flow but look up and what Spring is offering. Love lives on I think. A poem i find comforting in times of loss When I have moved beyond you in the adventure of life, Gather in some pleasant place and there remember me With spoken words, old and new. Let a tear if you will, but let a smile come quickly For I have loved the laughter of life. Do not linger too long with your solemnities. Go eat and talk, and when you can; Follow a woodland trail, climb a high mountain, Walk along the wild seashore, Chew the thoughts of some book Which challenges your soul. Use your hands some bright day To make a thing of beauty Or to lift someone’s heavy load. Though you mention not my name, Though no thought of me crosses your mind, I shall be with you, For these have been the realities of my life for me. And when you face some crisis with anguish. When you walk alone with courage, When you choose your path of right, I shall be very close to you. I have followed the valleys, I have climbed the heights of life. By Arnold Crompton Link to comment Share on other sites More sharing options...
Chelle C Posted March 27, 2020 Share Posted March 27, 2020 Gem, so sorry for the loss of your dad, my heart goes out to you and your family at this very sad & difficult time. We will always be here for you if you need us at anytime. Sending you love & hugs Love Michelle xx Link to comment Share on other sites More sharing options...
Colleen Posted March 28, 2020 Share Posted March 28, 2020 Dearest Gem, it it is with such a heavy heart that I've read of your losses - first the tripping from SAH and then the final blow from this dread virus. Your poor dad an innocent victim unable to shield himself. There are just not enough words in my vocabulary to tell you how sorry I am. I so so hope you find solace in the poem Daff has shared and in good memories. I pray you will find comfort and that we all will move past these terrible times we are in. again my condolences to you and your family. With love, Colleen Link to comment Share on other sites More sharing options...
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