Seeking Information

[Saltness]

I have joined here today. I have Power of Atorney for my 41 year old son. He suffered a severe Brain bleed caused by a benign tumour He is now left with severe short term memory, plus other related Aquired Brain Injury problems. At 41 he is a very frustrated young man desperate to lead a happier life. My wife and I would like very much to find someone in possibly similar circumstances as we have been searching for almost 7 years without success. To be able to discuss and compare this situation with someone would be a step in the right direction for us to progress in our goal to help him further.

[sospan]

Hi and welcome !

One of the advantages of this board is there are many people whom are either head injury survivors or carers of survivors and few whom are both.

There is an lot of experience, knowledge and empathy shared by the people on here, so don't be afraid to ask questions or like some of us do, vent our frustrations !

all the best

[Saltness in reply to sospan]

Thanks for replying to my post. Being new to this and having put this on to the “Daily Living” section can transfer it to Brain Injury Effects?. My hope is not to take out my frustration on here but to find someone with similar situation. It is early days just starting so might have some luck!

[sospan in reply to Saltness]

Don't worry, brain injuries can test the patience of a saint

[No1wthayla in reply to Saltness]

I think you can delete the post on the Daily Living section and then recreate and repost here. I tried to move one of my posts to a different forum but I didn't find a way to do it.

[Saltness in reply to No1wthayla]

Hi Many thanks at the moment I seem to be getting reply’s where it is I will leave it for time being. Still not quite into it but as I say will continue meantime and see how it goes. Thanks again

[Katiemc]

Hi I’m 33 had a stroke caused by an avm in 2018 my short term memory is not the best but long term i remember everything I was very frustrated at the start I now set my self little reminders I also write a lot down so I can go back over it I also take lots of photos of days and out write next to them what I did that day how I felt and it made it a lot easier at the start as time has past my memory I like to think is improving

[cat3]

Hi Saltness. I've seen your post to me on an old thread but thought I'd reply here amongst the current replies.

Although I'm mobile and look perfectly ok, I prefer a quieter life since my brain bleed and rarely socialise apart from with family and chatting with neighbours.

I spend most of my time gardening, doing household chores & DIY, watching Netflix documentaries, reading, doing crosswords ........and travelling the world online !

What sort of activities did your son enjoy before his brain injury ?

Cat x

[Saltness in reply to cat3]

Hello Cat3, thanks for your reply.Starting with Garry's(Son) interest include Sport ,footballer of pretty good standard amateur, Music, golf, Pool, addicted to phone!!, was married in Japan but divorce had to happen after Brian Injury and return home. While there learned the language with a view to better employment. Just an outgoing young man with lots to live for, and a credit to us his parents. I have been browsing this forum desperate to find someone as near to Garry's present condition which has remained static now for really about 5 plus years (Bleed was Jan) 2012 6 days before his 33rd Birthday. Able to leave rehab hospital on his 34th birthday 2013. We have Power of Atorney because he does not have the capacity to search this forum for example, Serious short term memory, It seems very difficult to find something similar as all the posts which I have covered so far everyone seems able to do it for themselves. Garry has a small house in our town with 24/7 Support by PA's. He resents this very much. He is totally frustrated without some kind of female company. Very hard to get him motivated. Lockdown has not helped. Long before lockdown we have struggled to keep him occupied due to his lack of motivation although he did have a limited routine before lockdown. He is able to go to the gym/steam facilities, Cinema, Small clerical unpaid work in the local council Leisure Facilities office where he knows all the staff. Prior to Injury he was educated to Degree level, Travelled the world both for leisure and work. He was employed by local fish company selling to Asia, hence his settling in Japan which he did of his own accord to hopefully better is future there. He was very settled with his wife. We have good support from Neuro clinical departments and are at present doing virtual appointments to further assess his way forward. We have connections to Headway and an affiliated organisation on the Scottish Mainland but this is restricted due to our home location. We can only manage to participate on limited occasions.

[cat3 in reply to Saltness]

The adjustment to lifestyle change is so hard after brain injury. I'm 8+years on from the bleed (was already retired) but still miss so much about my old life such as a spontaneous social life, fitness for hill walking and footy in the park with grandson. But I survived, and life is good.

I also have short term memory issues with poor word recall, but here on the forum I can take my time with word-finding without getting stressed and keeping folk waiting. And like many others I'm intolerant of excess stimulus, especially noisy, bright or crowded environments.

Poor balance, high emotions, forgetfulness, aggression and loss of dexterity are commonplace ; the latter being a great loss for me as I loved joinery and intricate woodwork (though I've recently managed an exterior door in around 5 times the time it should've taken).

Those who 'get' me don't frown on my early exit from wedding/funerals/get togethers but most of my previous friends have drifted away over the years.

We're always told by the experts that acceptance of our new status, together with the necessary adaptations, is key to quality of life. But for a dynamic young person with such an active history it's especially challenging and with an even greater sense of mourning. But it is doable as the rawness continues to fade and we learn new coping techniques.

We're all unique of course, but this is just my attempt at empathy with Garry's losses and challenges. I do hope he can find a level of compromise which gives him (and you) a way forward in a new life.

With love, Cat x

[Saltness in reply to cat3]

Many thanks for your reply and have read it with some feeling of hope that we will succeed in our battle to help Garry into a new life. It obviously may take some time but hopefully we can make some progress. We will try to continue with this forum and pursue our support from the professionals and see how we go. Just to elaborate on our geographical location which is a challenge as we live in the Shetland Islands and do not have the same opportunities and facilities in relation to brain injury rehab as we would living on the Scottish or uk mainland. What we need for Garry to achieve outcomes are limited. We will be glad to stay in touch and should anything crop up through contacts on this forum we would be forever grateful. Thanks again.

[cat3 in reply to Saltness]

🌷x

[RogerCMerriman]

Has he/you explored the local Headway groups? None will be face to face sadly, but mine is now virtual which is lovely!

Sometimes do need to just get out, and try stuff mine was or will be 7 years ago this winter.

[Saltness in reply to RogerCMerriman]

Hi Roger, We have just connected to Headway recently as we have nothing close to our home base. Having said that we have limited contact with an affiliated organisation on the Scottish Mainland in Aberdeen. Motivation is a big hurdle and with him being a young man frustration is also a very big problem. But onwards and upwards hopefully but not easy. thanks for you comments