Its Been A While

[Tilly1422]

Hi Guys,

Its been a while since I last posted as time seems to be running away with me just learning how to cope with our new life since my husbands discharge from an 8 month residential rehabilitation journey following his TBI.

He has managed quite well in moving back home and we are now 6 months down the line of learning to put solid routines in place and managing his exposure to the real world as everything new, from the birds tweeting to a quick 30 minute food shop is so impactful it can leave him coping with fatigue for days - I an literally winging it every single day because I cannot seem to find the least impactful route to introducing him to the outside world.

I shouldn't complain as I think maybe this new life has taught me so many things such as living in the moment because we cannot plan, that's no longer a thing for us and whilst he still needs a light touch supervision inside he still cannot go out alone as he just doesn't seems to have those skills to help him measure the risks and keep him safe. He doesn't really remember his abilities from before nor how dynamic and capable he was but I think that has helped us a little, as sad as that may be. He is very accepting and compliant and never challenges or makes any demands. To speak to him as an outsider he appears completely normal and unaffected by the damage caused because his superficial skills such as basic chit chat are intact, but that doesn't become anything more, ever. Its all just chit chat. How is the weather, will it rain, how many stars are out in the sky, why has the moon moved................... The person I once knew and who has been my partner for 35 years is no longer there and in his place is this compliant, unchallenging and content man. I do feel luckier than most who are on this journey but I desperately mourn the life from before and this makes me feel terribly guilty.

Today I received a finance pack to disclose all of our income so he can be assessed for paying for his own care package..... He currently has a 9 hour a week package that allows me to work uninterrupted (I have a full time job that I now need to do from home) just to keep to lights on. I earn sufficient to keep us afloat now that we are on one wage and I fear having to compromise this already strangled lifestyle to leave us with less.

I am told that because he didn't qualify for CHC he may qualify under section 117 of the mental health act for free care but I have never heard of this. I have an OT who is telling me we should be allowing him to make mistakes and is happy for him to go out on his own, locally, where he knows the route, but I am terrified as the discharge only gave me two options, that was to confirm I could provide the 24 hour supervision (light touch inside - close contact outside) or a residential option and I cannot see how he had jumped from needing this level of care, to no longer needing it.

What a journey this is.................. I am in a complete spin and challenged by putting him at risk or allowing him the freedom to make the mistakes - but at what risk. You can only make a life or death wrong decision once.

Today hasn't been a great day and hoping tomorrow is better.............. Thanks for listening x

[Lunalgg]

Tilly , I just wanted to reach out to say that your post describes my current situation and I understand completely what you are going through. My husband has been home 7 months from a 9 month hospital/rehab stay. We are still waiting on his cranioplasty. I am juggling full time work, caring and school age kids. Everyday brings another stress/challenge. Our future is still so uncertain but I am unbelievably grateful to still have my husband, but he is a different person than before. Here if you ever need a chat x

[MaryH75]

Tilly, my TBI occurred May 23. I dont remember much but I was convinced that I would returning as my very active, working mum of 3. Unfortunately it's only now that I'm realising that my live has been turned upside and I'm not the same person as I used to be. My family support has been amazing and I'm slowly learning how to navigate this new life. Sometimes feels like a daily uphill struggle but I'm also grateful for being alive.I wish you all the luck in the world with your families recovery. Sorry if I rambled lol 😆 Mary

[WonderingWanda]

what a lucky man he is! You are doing an amazing job of keeping it together. My own injury was much milder but even so it’s taken a couple of years to settle into the new ways. The baby steps are really true. I suggest making a diary for yourself so you keep tabs on what he could or couldn’t do. You will not notice the small changes but when you reflect you will see them and that little piece of positive news will keep you going.

As you already do, just keep one day at a time and carry on appreciating the little things. It’s amazing how uplifting warm sun on your face , a cup of good coffee or a bird singing as you walk by can be. These are the things that matter. Your husband has accepted it which is a blessing, I hope you manage to do the same as life gets more peaceful then.

It’s early days. Best of luck with the assessments.

[Cinderella18]

Hi Tilly, you sound amazing and it’s no wonder you’re in such a spin about what decision to make. Although many carers of a TBI sufferer would love to have their ’cared-fors’ having compliant, unchallenging and content behaviours, it’s understandable that in reality how difficult this must feel for you. Any change in behaviours following a TBI is hard to accept, whichever way it turns out, as we all know.

Your main concern, which is a big one, sounds to me like you need help to make this important decision on how to go forward. My advice would be to contact Headway to see if they can advise or signpost you. A good chat with the right person should help you get your thoughts and concerns in better order. I wholeheartedly wish you luck and would love to know how you get on. Sorry for the long-winded reply!

[Shellmonkey]

Hi TillyYour doing amazing

I'm going through the same thing almost 8 months on after my husband had a cardiac arrest and hypoxic brain injury.

My husband is also fine with chit chat and still has his sense of humour but no way could I let him out alone. This once strong ,strong willed man is now so vulnerable. He doesn't understand he has a brain injury but forgets things he has done and all hus planning skills have gone.

At least the younger grandchildren don't really notice much difference.

But in that split second on July 14th last year our lives changed forever.

It's not been easy but he's here we can have a conversation and he makes us laugh.

The doctor has told me to accept the new norm which I find hard as then I'm giving up hope of having our life back although the doctor has said life will never be as it was.

[Sifu]

🙏🏽❤️