I am writing as the daughter of someone who recently suffered a brain injury just in March, has been discharged now for about 4-5 weeks.
I know the fatigue is normal, however my Mum is so different it’s really hard to know what to do. Not personality wise but she has no motivation to properly look after her self or do anything. Again I know this can be normal. She wants to sit and watch tv all day which was never previously normal for her and she tries to dissuade any one from going around to see her because everything is too much effort. She is withdrawing from family and friends and not taking care of herself properly. She lives alone and still has some confusion and physical effects left from brain injury. We are all really worried about her but she will not engage with any of us and things everything is fine. Professionals such as GP won’t speak to my without her consent but she seems unable to provide them with consent. She has refused all further input from community services and to me seems extremely low in mood and motivation.
On top of this there is alcohol abuse which has been an issue long-standing but has never been to this extent, she has never lost interest in her life or family. We are really really worried that something quite serious is going to happen to her again but have no idea where to turn or what to do. Any advice would be so appreciated
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HannahPol
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15 Replies
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Dear Hannah Pol. First of all be proud of yourself. Caring for a brain injured relative is hard and often long term. Your efforts show how much you care. For this you will need patience, resilience, empathy, determination and lots of love. Please dont take on too much of this responsibility here. Share it with others.
The way the brain injury effects your mum may change over times as she adapts to things and as she heals as best she can. The way she is now might not be the way she is long term.z chance things improve to a degree.
For now, maybe try describing gently to your mum the dangers of staying home alone without many visitors during her initial recovery. Does she need help preparing her favourite meals. If so discuss that. Be prepared to have the chat several times to help her remember.
Watching lots of tv might be just what she needs right now. Maybe accept it this year and try to reduce it later. For now maybe have conversations about what she has watched. E.g. can she remember and describe yesterday's East Enders? Did you watch it too...? Use this to help her memory improve or to consider her social understanding ahead of her doing things in the wider community for real.
Re getting help to see your mum if she is struggling to engage I would consider:
- Going to see your local Headway group.
- Phone the headway help line.
- Contact your MP office. I believe they can use local knowledge and contacts to help with situations such as your. Same goes for local counsellors.
Thank you Obiwan, the advice about trying to engage about the small things she is doing is good. I can try that. It’s all a mid muddled in between the alcohol abuse and catching her when she is sober or willing to engage. I can try this though. Unfortunately I live in another country so engaging in person is difficult but my siblings and her partner (don’t live together) are near by. When she allows to see them.
I have suggested a online shop as she is too tired to go shopping. She refused, I might again try this or a local meal service or farm shop for home cooked meals.
I could try the MP someone else has suggested that also.
Hi Hannah. I'm with Obiwan on this. You haven't mentioned the nature of your mum's brain injury, but only 3 months since her injury, your mum could still be struggling with a whole new and chaotic consciousness, and mentally exhausted.
3 months after a brain haemorrhage I learned by trial & error that regaining my previous life wasn't an option, so there was a period of mourning for a few months. TV was such a blessing as it made no demands and provided me with a 'holiday' from the expectations of others.
As Obiwan suggests, encouraging her to share her present version of life might be the surest way to gain her trust and, so long as she is fed and safe, would allow her to make her way back to you in her own time. Send her flowers and reassuring notes from time to time .....and watch & wait for a little while longer.
Meantime, stay in touch here and maybe phone the helpline on freephone 0808 800 2244 during office hours, for support.
it's a tough place for both of you.I lived (and still live) alone after my stroke (cvst 2014).
Others advice already sounds good. Maybe Yr mum can't find the energy to talk to friends or family if they come over? feels embarrassed or simply can't explain to them how she feels?
After 3 months I think I was not going far but just had friends going for a short walk or half an hour to the pub or to watch badminton.
I slept at least 12 hours and had to set myself a diary for the next day each day with 20 minute slots to eat, rest, yoga, TV, walk, rest, eat, sleep, draw, chores, rest, cook, rest, TV, shower, bed sort of thing.
I have loads of ideas but too tired to mention them all.
Wrt doctors - could you maybe make an appointment for her and go in with her "to take notes"? I know my family did.
Wrt drinking - I wasn't allowed to drink at all in the first year. Again her GP could perhaps help by reminding her about the risks - by letter if you think she might listen.
Thank you for your swifty reply and kind words. Her brain injury was a mix of alcohol abuse and ?epileptic seizure brought on by days of alcohol abuse but essentially multiple head injuries that no one knows how they were obtained. Unfortunately mum is a alcoholic so it doesn’t really matter what Gp or any of us say in regards to drinking she will still do it.
I live across the water in Ireland so can’t attend GP with her- family members have tried but she won’t let them into the appointment. We have made two recent appointments at the GP but she has refused to attend- quite often she won’t let family in to the house or engage with friends.
I understand her tiredness but I’m worried she is making herself more unwell in between the alcohol, lack of nutrition and struggling at home. Maybe with some time she will gradually come out of it at she heals more but my true concern is that she may end up in hospital again or even worse and not make it that far.
sounds like you may need to ask for a multi disciplinary team meeting with her GP, headway, AA and social worker and yourself present - with a view to getting a practical day to day plan in place.
I think that would be brilliant. I am myself a Gp nurse so I know there is help out there. The problem is the gp won’t even have a conversation with me- because mum hasn’t given consent. I will persist with this. I have written two letters to GP and will try to call them again today.
I can try that for sure. I just can’t be there, I’m heavily pregnant with a thre year old and flying across is impossible. My sister is at home post cessarian section with a new born and a two year old! All very complicated. But I can push my brother. Thanks
Dear HannahI can see you’ve had lots of good advice here.
I’m helping my sister who had a head injury and like you I had real difficulty in the early days getting my sisters gp to talk to me as my sister really struggled to communicate on the telephone. I got there in the end after some very difficult conversations- I had to remind the gp that she had a duty of care to a very vulnerable patient. So don’t give up. Seeking the help of the MP is a good idea and I would really recommend talking to Headway. They might well be able to help here and will be able to provide good advice.
Take care of yourself as well - this can be exhausting and an emotional rollercoaster. Try to share some of this with other family members, your mothers partner.
I hope your mother gradually improves- keep posting on here . Good luck.
Hello Hannah,After reading your original post and all the responses so far, it appears that your mum's alcohol dependency could be approaching the last/end stage.
Is possible that your mum could be 'Sectioned' as an involuntary inpatient admission to a Psychiatric hospital? There is no easy solution, given that you are stuck in Ireland.
Hi Hightide, thanks for your reply, unfortunately someone can only be sectioned if they are classed as a risk to themselves or others. This has to be in the form of expressing a wish to end one’s life or hurting another person. Self neglect as an omission is not enough to warrant this. I’ll keep trying all my options
My husband handwrote a note saying I agree to the GP discussing my health with him as I was unable to and he got me to sign it. He took it to the surgery and then he was able to phone them and other professionals to discuss my needs / appointments. Perhaps your mum would agree to this and it would mean no one would have to attend appointments with her but a family member could still discuss with the doctor.
Also there is the Carers route which is formally recognised. To register as someone's carer you have to care them so many hours per week - this can include weekends and evenings so it does not mean a person cannot have employment or other responsibilities. The Carer's record gets marked as being a Carer and perhaps there is also a process through that where consent is given by the patient (your mum) to discuss her medical needs...
If your mum had surgery, she will have a head injury nurse specialist at the hospital to check symptoms with.
If you want specific referrals being made related to head injury, perhaps contact the Consultant's secretary who may be able to liaise with the Consultant to agree to referrals being made and they will either make them or write to your mum's GP for them to do.
Someone above mentioned reminding the GP of their duty of care for a vulnerable patient - in the circumstances of her injury and overall health and behaviour, the GP should act on this IMO and communicate with a family member. The suggestion of getting a multi disciplinary meetings sounds a good way forward and the GP and hospital should both be involved, particularly as the the alcoholism makes her recovery more complex and might impede recovery meaning she will need Care.
Are there local alcoholic services?
Sorry you are going through this worry about your mum.
Hi HannahPol, you have got your hands full and unless mum lets you in your going to struggle, although mum has a brain injury her main problem is going to be the alcohol abuse, because until she can get that under control it will affect everything else. I was married to an alcoholic and until they are ready to accept help there is very little you can do, I wish you lots of love and luck for you and your mum, it’s a horrible disease, your mum is very lucky to have her children willing to help her because I bet she’s not been easy love Alice xx
I know you posted this a while back but I wanted to get in touch as I am literally in the exact same situation as you so really wanted to find out if you managed to get any help for your mum?
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