Significant other has cognitive issues from coma 50 years ago

[SOOBRI1030]

Although I've known about his coma since I met him 7 years ago, it didn't become clear how impaired he is until we made a geographical move and he had to work at a new job in his career. He was fired a year later and from many other jobs after that. All he can do is work in retail now which only pays minimum wage. Everything falls on my shoulders. He's a good guy but at times it's frustrating dealing with his issues: communication, emotions, memory impairment, lack of insight and empathy, and learning issues. Anyone else have a similar situation or some good advice about being in a relationship with someone with a brain injury?

[sca2013]

If you're in the UK definitely give Headway a call 0808 800 2244 and check out their website headway.org.uk/

[SOOBRI1030 in reply to sca2013]

Thank you sca2013. I did send an e-mail because I'm not in the UK

[sca2013 in reply to SOOBRI1030]

If you let me know what country are you in I may be able to direct you to someone more local to you. Also, I'm in the US and actually used freeconferencecall.com/ and setup a free telephone call with Headway that way. They were happy to talk with me.

[SOOBRI1030 in reply to sca2013]

I am in the US as well.

[sca2013 in reply to SOOBRI1030]

Ok this website should help you find a local affiliate for you in the US: biausa.org/find-bia Also there is a private Facebook group you may find helpful "The Personal Side of Traumatic Brain Injury" They are very supportive and helpful too.

[SOOBRI1030 in reply to sca2013]

Thank you!

[Jembly]

Good advice to contact Headway, maybe there is a local Headway branch which I am sure they can tell you about if you ask, failing that a Mind group which is currently helping me with my anxiety problems.

Jem

[SOOBRI1030 in reply to Jembly]

Thank you Jen. I did write an email but haven't heard back from them yet.

[Jembly in reply to SOOBRI1030]

Sorry to hear that.

Following is all the details web address to their contact details,

headway.org.uk/contact-us/ includes address, telephone, email and fax.

Trust this will help

Jem

[SOOBRI1030 in reply to Jembly]

Thank you!

[jodr]

Patience patience and more patience.

I know very well this is easier said than done. My husband had his bi 16 months ago so I knew what he was like before.

It's incredibly hard work dealing with daily anger outbursts, no emotional support as well as all the other things you list but it's important to remember that it is his bi that makes everythings o much harder for him even if his lack of insight means he's not fully aware.

I found brain injury a practical guide by Trevor Powell helpful as well as James cracknell touching distance. Both books worth reading.

It's not possible to expect our fellas to do more than they're capable of including what job they have. My husband lost his job too. So yes everything does fall on our shoulders.

Something we have found helpful is we now have a big white board which my husband plans his week on. It helps him manage his fatigue a bit better and remember what he needs and wants to do each day.

Also finding any local group that he might want to join that will bring him pleasure. My husband has started a woodwork group which has been brilliant for him. It's calm,in the woods and with other people struggling with the day to day not necessarily with brain injuries.

Look after yourself too and hopefully have somebody that you can off load to. It can be lonley messageme anytimeyou like ☺ jo

[SOOBRI1030 in reply to jodr]

Thank you Jo. It helps to hear from someone else going through similar experiences and challenges. I like the idea of him finding a group so maybe he'll make some friends because when he's not working he's sitting on the couch watching tv.

[sealiphone]

As it was 50 years ago I wonder how much help and advice he received at the time. As it's common knowledge that trying to learn new skills can be particularly difficult for someone with a TBI.

Over the years I've met people who's TBI was decades ago and they'd never been assessed to see if they had cognitive problems, even though to anyone with a TBI it was obvious.

If you were in the UK I'd advice seeking a referral, from a GP, to see a Neuropsychologist.

The thing is if he's under stress it likely that any impairment will be magnified, which leads to more stress.

All his problems came to light when he tried to succeed in a new life whilst trying to learn new skills. He's probably seeing himself as a failure even though he's fighting to be his best for you.

Headway are excellent but other countries have similar organisations, in the U.S. the Family Caregiver Alliance, are a great resource.

Books have been recommended and this can help a partner to understand a TBI, enabling them help their partner.

Good luck

Sealiphone

[SOOBRI1030 in reply to sealiphone]

Thank you so much for your reply. He has had a neuropsych eval and was not diagnosed although it's so apparent to both of us that there are some significant issues. He has told me that when he woke up from the coma he didn't know who his family was and had to re-learn everything but unfortunately they did nothing y get professional help. Instead his father took time off from work to teach him. He has had problems ever since but had been able to get by. He even had a job for many years in his field. His depression after the move and he lost some family members and that's when his challenges became very apparent. I tried to help him but for a long time he rejected my suggestions which almost broke us up.

[Hidden in reply to SOOBRI1030]

Hi this sounds a lot like my condition! I have just had a process of assessment by a neuro-psych after a long wait and it has been a real eye-opener. I have memory loss problems in an Altzheimer's pattern but I can remember things if I make a real effort. I have been on high dose 'Happy Pills' for 7 years since my mother died suddenly and they are like an emotional cushion. The optimum dose enables on to carry on; too much and one couldn't care less I found! I have recently come off them and found that if something gets to me I can take control helped by the thought that 'I wouldn't be feeling like this if I were still on the happy pills so...'

I would though make one point that my Neuro-psych made which seems to have totally escaped my Neurologist - as one ages and loses brain cells anyway the injured brain finds it harder to compensate for the deficit left by the old damage - it runs out of options. I am now campaigning for this to be known by GPs, TBI survivors and their families as it would be really useful not to get the blank look when these problems arise...

[SOOBRI1030 in reply to Hidden]

Thank you for sharing your experiences with me Caroline. That's what I thought too about my guy however his neuropsych didn't say that but it makes a lot of sense. He was told they didn't see anything that will progress. I'm concerned also because his mother had Alzheimer's. Living mindfully one day/moment at a time helps to not focus on the possible negative future possibilities.

[EffieGee]

I often look at the YT videos by The TBI Coach and find them useful and full of insight, this is a lady who herself suffered a TBI some years ago, her guest speakers are excellent too.

[SOOBRI1030]

Thank you I will definitely check that out

[Katie55]

My Husband is Ok with people and places from before his accident but new people and places just dont stick in his memory He really hates to try out a new restaurant or go shopping in a strange town He can get into a proper state if I insist on going somewhere new ....Sometimes its just easier not to go but I persevere and quite often once hese got there and settled in he is Ok ....ish He has just received his PIP Questionnaire and has been up all night worrying about it I really wish these benefit people knew what misery they cause . . .?

[SOOBRI1030 in reply to Katie55]

What is a PIP Questionnaire?

[Katie55 in reply to SOOBRI1030]

PIP Is a UK Benefit ,Personal Independence Plan i think it replaces Disabled Living Allowance Its an ordeal just filling the form in But then they call you in for a medical interview which is another ordeal he could do without !

[SOOBRI1030 in reply to Katie55]

Thank you for the explanation!

[Hidden in reply to Katie55]

I only scored 2 points in my PIP interview - as well as having memory issues like your husband I also do not breath enough automatically and am in bed on oxygen! I have been advised to reapply and appeal but it is finding the energy...