Brain injured son coming up to 8 years.

[Sambo73]

Does it ever get any better? We have all been through so much. I feel like we have just come to terms with Cals brain injury and side effects. It has now become a part of our lives. We have daily struggles but they are now just part of our normal life. It’s bloody horrible though isn’t it!? Why should we still struggle to get help and keep benefits going. After nearly 8 years r Cal is Cal, he’s never going to change, he is what he is. Our magnificent beautiful baby boy 🥰🥰🥰🥰 xxxx

[Nanapal]

Hi S73, I am also the mother of a brain injured son (2 years 3 months post injury, cardiac arrest & subsequent severe hypoxia injury due to lack of oxygen).

I have read through all your past posts this morning and the heartache you and your family live with. My son is severely disabled but we still have glimpses of our son - smiles, flirtatious nature - he has lost his speech but his deep brown eyes can convey so much. Like you our lives have been totally changed not just our sons. Can we as mothers ever accept what has happened to our ‘babies’ I really struggle with this and know you will understand that feeling.

I hope Cal finds enjoyment in his life and life itself for you all becomes less of a struggle.

Take care Nanapal. x

[Leaf100]

Hi Sambo,

It is really quite ridiculous that various folks that make us jump through hoops for benefits etc can't seem to get the reality a lot of us face - that this isn't going away.

One would think the medical people would put their foot down - and just write "same as last year" on this year's report, and that would be enough. All the time they spend on this when they have their hands more than full as it is. Where did the common sense go...

The injuries are funny things, and of course we are all different.

I had serious tremors in the beginning - people would ask me if I wanted them to call me an ambulance. When I first went to the local brain injury society and was waiting for an appointment someone else who was waiting said 'Oh , the tremors - mine went away after about 8 years.' And the time, I thought OMG! I can't last through 8 years of this... then 8 year mark went by and I felt ticked, cause there they still were... I had this completely made up idea that they wouldn't last longer than that... well, as time has gone by they have dropped off in some circumstances (not in all). So, we just don't know what will happen - we just adjust to where were are and what we have and we're happy anyway, at least to some degree.

I also wonder how much faster we'd get better without the stress of constantly having to prove to people that we need money from that we did not suddenly get a magic bean that cured us.

And while Santa is at it, he can invent a disability card that works everywhere, instead of having to qualify for disability here, there, and oh ! over there, as well.

The docs are likely fed up with paperwork for that, too.

I have come to the conclusion we are the sane ones. The hoop jump setter uppers are the crazy ones. (And not the good kind of crazy.)

Leaf

[paxo05]

Hi,I think it doesn't get any better ( from a bi person's point of view) it just gets easier as you adapt your life to how you now are.

The things that bring you back is the forms and hoop jumping you have to do.

Been left to get on with your life with support is the important thing in being able to form this new life.

So yes it does get better as it becomes the new normal .

Hope this helps

Pax

[Nafnaf87]

After 25 years this May 18 all I can suggest is keep going. Things change, they don't change, sometimes they are good, sometimes not.

I try to ignore the outside world as much as possible because I feel safer that way, not safe but safer. I probably break all the rules regards money and benefits but I don't understand so I don't give a damn. Don't need much and don't care about going to the pub or holidays 🙂

A long time ago I said to Dad 'when is this going to end, it's been 6 years now, 20% of my life!' - he looked at me and said 'that's not very long'. It's now 7 years since he passed, 4 years ago my mother and brother threw me out of our business and our home and still I plod on because there is no alternative. Then 2 days before Christmas I got a letter from somebody called Estate Research Ltd - turns out my Dad wasn't quite what I thought, I knew some of the story, the timelines were correct by the actuality a bit different. Apparently my elderly mother was surprised the history is different to what she "knew" but I don't know because there is no communication. The story is all a bit strange about relatives I didn't know I had and an uncle who passed more or less 2 years ago to the day intestate - there may be some money so I'm sure my dear brother will be all over it!

Anyway, I've waffled on for so long I forgot where I was going, oh that's right, plodding on regardless - at last I have got the local Brain Injury Service to take some notice and they seem to be interested in helping me 🥳

Keep going

Best wishes

Michael

[skydivesurvivor]

good on u!! Lost my brother and sister who actually ran a home for brain injured people!!! They couldn’t accep the changes in my character!! A mothers unconditional love is an astonishing thing!! Cared for mum, my carer. As she developed Alzheimer’s. Tried to repay the 22 years she put up with me!! Love truely is a funny thing!! Keep up the excellent work, he may not show it but am sure he appreciates it!! U one of a kind!!

[Annabella1976]

I’m 10 years Fri 13th jan and I feel like I’m going back words all the time

[StaceM8]

Hiya Sambo, no U shouldn't just accept him the way he is. I'm 28 years on & I'm still learnin (nowhere near as much as I was obviously, but every now & then I do notice an improvement.

They say after 3 years, that's it, U won't see anymore improvement. What a pile of .............. The so-called specialists have been wrong so many times. In Portugal, don't kno if this is particularly Pc, but I was told I would be a brain dead cabbage & would never recover. I'm now 90% back to normal. Not how I was per-say, but I am to all intense purposes, relatively normal (bar my concentration, memory & severe lack of motivation, as with most people who have sustained a serious head / brain injury)

As I said I still see improvement to some extent. As it goes over Xmas I was told how I had to listen & not just dictate my view - just because U have opposing views, doesn't mean U can't both be right, so U therefore have to listen to their opinion as well. Maybe just agree to disagree. I had the best conversation with my brother I've had for years. (admitted, me not drinking as a rule, getting drunk on black Sambuca might have had something t do with it ;o)

Anyway encourage him, do things with him, trying not to get frustrated when he makes mistakes (which he inevitably will).

Anyway, take a look at my profile (which does need updating as it goes) cos there's a lot of information that might be helpful ;o)

Stace Xxx