Hi everyone, only posted once before as never really get the chance but love coming on hear every now and then to read posts to know me and my family are not alone and going through this on our own.
A year has passed now since my dads cardiac arrest which has left him brain injured and oh what a tough roller coaster it has been.
My dad has just turned 60 and has always been a very hard working man who simply can't keep still and he is no different now even tho he can't work anymore(which he doesn't realise as he has his own business but his brother now runs it) . He needs 24hr care and it's so hard some days as we have to follow him everywhere, some nights he only sleeps couple of hours as he constantly gets his time mixed up and thinks he needs to be at work and this can continue right throughout the night.
Sometimes he can be aggressive, then half hour later he has completely forgotten and is a different man and is all smiles. He loves his food and we have a constant battle trying to make him not overeat as the minute he has eaten, he's forgotten and wants to eat more.
When he's crossing the road we have to follow him right by his side as he can't judge the distance the cars are coming( which he also doesn't realise) , and constantly tries to rewash everywhere in shower as he can't remember what he has done.
As his daughter, I absolutely love him , and enjoy helping my mum being his carer but some days it's so bloody hard, and is so mentally draining. My dad has always been the best father ever, and the most amazing grandad but now has no time for his grandkids most days, and that's the biggest shame for him and the grandkids as he used to love them so much.
Obviously we are so lucky to have him, but god it's hard somedays, and he now doesn't realise when he's saying something nasty and can say the nastiest things, then half hour later he's forgotten and he's telling you he loves you.
In some ways over time he has improved as when writing lists( which we try make him do often to get his brain working) he is 80% better than what he was months ago, but some days he's so confused and doesn't even recognise his own home or my mum, and other days he remembers loads.
Sorry about the massive rant, I just want to tell people my experience of living with someone with hypoxic brain injury is like as there doesn't seem to be anything else out there to share what is a crazy time in our lives and think it's good to know your not alone.
Thinking of all of the carers out there, and anyone who has been lucky enough to survive cardiac arrest and live a good of life as my dad, hope to hear from you all 😊X
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Devaiur59
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Yep as the one with bi I sometimes feel I got the better end of the deal.I would hate to care for me as I know I can be hard work at times.
On a better note...He IS improving yeeeaaaahhhhh. Small steps but good steps. It does get easier ...I think...
He may have altered but to him he is still the same dad he always was and wants to be. He may find it hard at times to be that man and trust me that is frustrating in the least. But he probably is trying to be the dad you loved. Let him know you love the dad he is now also. It may sound a simple thing to say but it's a big thing to hear.
Thanks for reply. I do tell him every day how much I love him, and how much of an amazing dad he is, and when he's in good mood he gets tears in his eyes it means that much to him. Really do love him so much, and really wish this had never happened to him as I know most days he gets really fed up and says I know something is not right, my head just feels messed up and I feel so sorry for him.
Must really be so hard for him , but he is a fighter, and I really hope for his sake he carries on with little improvements, just so we can give him more independence for his sake, as because he's not completely aware of surroundings, we are always at his side and I can tell that he wants his own space at times and constantly having us there frustrates him. He's doing so well tho, I'm so proud to call him my dad 😊
Never really doubted you letting your dad know how much you love him and it's nice to hear.
He will get there with all your help. It is a long slog but worth it. I no I go on about keeping a log of how you are from day to day but it is good to look back and see progress as well as identifying patterns to help recovery.
It's nice to hea of people being positive no matter how hard the battle.
Thank you for the update, it's so good to hear how the progress is going.
He may yet see improvements, I used to remind myself that my brain was like a child's, in some ways having to learn some things all over again because the original pathways were broken irreparably and in a child it could take years, like crossing the road and judging car speed. You wouldn't trust a very young child would you. So when out on my own I used to wait until there was no traffic at all, or only cross at a crossing, but now I find myself able to judge those speeds fine. I'm 5 years on now. Even when I was with my husband I used to make him wait with me until I felt safe to cross, I used to hate him all but dragging me over the road when I was panicking because I thought it was unsafe, nightmare!!
So, I'm sure you will find the new normal will get easier to cope with.
I also survived cardiac arrest with a brain injury. I am 65 now, 3 and a half years post event. Reading your post made me cry as I know my wife and family go through very similar frustrations with me. I am so sorry this has happened in your family. Some days are better than others. And then some days just really suck. My thoughts are with you and your family and I wish you the best that is possible always. I still love may family. Sometimes I am just incapable of communicating that to them, which frustrates me and them to no end. So if nothing else, know there is at least one other person that knows to some degree what it is like for you and hopes the best for you in all you are having to go through.
Thanks so much for replying. Yes it is hard some days, especially when he can't sleep as he thinks it's morning constantly like last night so I've not had much sleep, but on bad days, I just try and take a minute to remember how lucky we are to still have him as even tho life is tough with him in it, it would be a lot lot worse if he didn't make it through the cardiac arrest and coma he was in.
Could I please ask, how long did it take to realise you had a brain injury, as my dad realises he's confused, but not that he's brain injured. Just wondering if one day down the line he will realise?
Somewhere around 6-8 weeks after the event (which had included a grand mal seizure) I couldn't figure out why I just didn't seem to be able to function like I used to. I went into the doctor at that point to find out what was going on. That is when they diagnosed me with , in my case, anoxic brain injury, not that that helped. But at least I knew there was something wrong and I just wasn't making it up. The weird thing for me was for a few hours after the event I was hyper capable cognitively speaking, better than I had ever been. Then over the next few days and weeks I steadily declined. It was like my brain knew my brain wiring was about to break and wanted to give me every advantage it could while the connections were still there. You're Dad may or may not realize it since everyone is different in what they experience and realize. I will say there has been plenty of denial on part even after finding out. One thing I learned, but was unaware of is that there is a grieving process for all involved. Not because someone died, but that the old me was no longer there. I remember being angry, sad, depressed. The full range of emotions and it seemed like in no particular order. Things have improved over time. Just being able to accept that how I used to be is gone and I am creating a new one has been helpful. I've made the most progress in this way over the last few months. So it took me some time. One of my favorite sayings has been "God give me patience and I want it now" Haha I'm happy to answer any other questions too.
Thanks so much for replies, it really helps me understand what my dad is going through so much more speaking to you all, and makes the situation easier to handle.
I really know what you mean about grieving the person you once was as couple of days ago, I put my wedding footage on while I was with my mum and dad and watched my dads speach which was so funny and my mum burst into tears but didn't let my dad see, and I was crying too because I remembered instantly the person he used to be which was very chirpy and very quick witted just fun person to be around and we all really miss them days.
He does still have good days, and some days he's only in good mood for couple of hours but we just take everyday as a new day as it comes but when he does something lovely or funny we all smile to each other and say yes there's my dad right there and those moments keep us all going. It's like when you have new baby and they keep you up constantly and your tired and once you get that first smile you realise it's all worth it but that's how I see it .
My dad has always been very clever, and a good businessman like his dad but with the amount of damage he must of had to his brain he doesn't seem to be able to realise yet that he's actually got a brain injury and I still can't work out if that's a good thing or not. All I know now is we have good days, bad days, good nights, bad nights, but no matter what he puts us through we will always love him as if the tables were turned, he would do ten times more for us and I'm so proud to call him my dad 😊
Here is a link to a resource from a company that has many resources for the brain injury community. They have a free bulletin - their most recent one is about Grief and Loss. lapublishing.com/blog/brain...
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