How do I talk to my Father-in-Law?

[SpookyMrsGreen]

My father-in-law has a serious brain injury and is no longer the vibrant personality he once was. Prior to his cycling accident nearly 6 years ago, he never sat still. He was always out and about, cycling, visiting pubs, socialising etc. Now all he does is sit in front of the TV. I don't know what to do with him, and neither does his wife, who is now his full-time carer. Any advice? Should we even bother trying to include him in family activities? I sometimes wonder if we are flogging a dead horse...

[paxo05]

Hi there.

I can only give a reply from the other side.

Remember he may not be the some person anymore. He may still be coming to terms with it himself.

Does he remember how he used to be and if so remember this can sometimes make it worse. He may compare what he feels no longer able to do mentally as well as physically.

Please do include him but try not to make comparisons of how he was to him.....he may know already and reminding him can make him feel more withdrawn.

There's no quick fix to this and no one solution. Patience and honesty go a long way . Does he attend anywhere with people who are going or have gone through simular things.

Knowing the changes and being able to accept them are two different things. This can take time and though six years may seem a long time in the grand scheme of things it isn't.

Myself I had a cycling accident 20 years ago. It took at least 8 years to start and accept the new me. I am more withdrawn than I was and find it hard to mix but that's ok.....it has to be.

My family include me but accept if a situation gets to much for me I will leave. It is not a personal snub it's just how it is. I love and care for them no less now than pre bi and the same goes for them to me.

I hope this makes a little sense and is of some help.

Remember he may have changed in some ways but he is still very much the same person with the same loves and values. At the moment he may be feeling a little lost so try and help him a just to the person he is now.

Pax

[SpookyMrsGreen in reply to paxo05]

Thank you. Our challenge comes from the fact that he barely speaks anymore, so we do not know how he feels or what he needs. All he says occasionally is, "I feel awful," or "I'm tired," with the rare full sentence that comes out sporadically. He no longer has the mental capacity to learn sign language or another means to communicate. It feels like he has given up on life because he is physically unable to do the things he used to do, and he has no interest in the simple activities we try to offer.

[cat3]

It's a big challenge trying to help someone who doesn't show interest in life. I'm sure your father-in-law would benefit physically from outings/exercise but it's hard to judge what he needs psychologically without knowing more about him.

Would you say he has the physical ability and mental awareness to cycle again ? If so it might lift his spirits to venture out with a fellow cyclist if there's a quiet area to experiment. Cycling can be so uplifting if he can be persuaded.

I bought a new bike immediately after my BI but didn't cycle 'til a year later after finding local access to a disused railway track, re-surfaced for cycling. I rode for miles feeling SO invigorated (nothing like the fatigue of walking) and it helped build up fitness and self confidence.

If you could tell us more about your father-in-law's capabilities we could offer more suggestions...… Cat x

[SpookyMrsGreen in reply to cat3]

Thank you for responding. He is definitely never getting on a bike again! He does have a training bike at home but I don't think he has even sat on it for months. My mother-in-law tried to encourage him to use it but he has no interest. We have shown him videos of his old bike rides, his cycling friends visit regularly, and we have also tried to give him his camera and see if he wants to use it (he was a professional photographer). All he wants to do is sit on the sofa or lie in bed, and he barely speaks anymore. We have established that his short-term memory is damaged, he needs 24hr care and he cannot be left alone. He needs help to perform basic tasks such as getting dressed and going to the bathroom, he cannot prepare meals, and he needs a wheelchair when we go out for extended periods of time. He damaged his leg very badly in the accident and has recently had surgery to correct long-term problems, so his physical state is quite poor as well. I think he's a lost cause these days!

[cat3 in reply to SpookyMrsGreen]

I'm so sorry to hear of the extent of your father-in-law's issues. I can empathise with wanting to do nothing other than lie in bed since my Bi, though my awareness level must be several notches up from his as I manage to function pretty well when needs-be. But it's always a struggle and I rarely socialise ; if I do it means I'm shattered for days afterwards.

So I sympathise with your dad-in-law's need for calm and rest, and perhaps that's all that can be expected from him ……... simply 'being there' in his own comfortable world with the knowledge that he's amongst family who love him. Outings, if only in his chair and for limited periods, will benefit his physical & mental wellbeing, but if the ability or the will is lacking then perhaps it's kinder not to push him any more than necessary.

I'm so sorry your family are struggling with such an intractable problem and I can imagine what relief you'd all feel if only your dad-in-law would 'potter' around a little. Can I ask whether he's had any input from a neuro team or whether you feel he's clinically depressed and in need of medication to lift his mood. Cat x

[gabbycat]

It sounds like he doesn't know what to do with him either. There is no point comparing him now against him pre-accident. You need to get to know who he is now and what is interesting him. He's watching tv? Join him and share what he is watching. It might seem endless or boring but it is what he can manage right now. It's possible he is not joining in because he can't cope with too much and doesn't want to say so, or can't say. By giving him choices you can show you understand. Sometimes it will be the right thing to leave him at home and do family activities without him but do so by saying what you are doing and which elements of it you feel he should choose whether he can cope with. Sometimes you need to change the family activity to be inclusive of him, which might not meet your expectation of what the activity should be but is the kind thing to do. You say he used to socialise a lot,can he handle pub environments now, my husband can't as it is far too over stimulating. Where are his friends? Are they still visiting or have they drifted off? Re connecting him with one or two key friends might help, maybe over breakfast or lunch rather than evenings. It may be hard for him to fit into the noisy busy world you occupy so you need to enter his world and help him navigate it, it's a lonely place for him, being different but it is his world now and with acceptance of this will come ways of living and a new normal.

[SpookyMrsGreen in reply to gabbycat]

My main concern is the impact on our children, who are 8 and 6 years old. We did take him on our family holiday with my mother-in-law, and we purposely chose to stay in a quiet village in Cumbria to suit his needs. I still don't think he really enjoyed the holiday, or even if he remembers it. We tried to go out to local towns, my mother-in-law took him out on her own one day, but all he wanted to do was go back to the cottage and rest. I don't think that is fair on our children, as much as we still want to be a family unit.

With regards to watching TV together, that is a fair suggestion, but again I don't think he really registers what he is watching. My husband and mother-in-law do watch sports with him, but that has never been my interest so I leave them to it. He really just watches whatever we put on, and he rarely has an opinion if we ask what he thinks of the program. Sometimes he gets ideas from the TV and it makes him fidgety, for example thinking he needs to fetch the car or go somewhere, so again we have to be careful with what he watches.

My mother-in-law does take him to the pub occasionally but again he can manage a couple of hours and then he feels tired. She struggles to engage him in conversation, so it can be very lonely, and that is the issue at the moment. They attend local social gatherings, for example bingo afternoons and cafe meetings, but he doesn't seem to enjoy them. It feels like we drag him round with us for the sake of it sometimes.

[gabbycat in reply to SpookyMrsGreen]

I understand what you are saying. I have two children, both of whom have had to learn to accept their Dad is chronically fatigued, due to his brain injury. I agree you need to find a balance between the needs of the kids and their grandad's needs. And your mother in law's needs. It's a hard balancing act and you might be right that sometimes it will be better to go without him on the bigger trips. Kids are very accepting and will adapt to him but your m-in-law needs to be a grandma as well as a carer, it will help her cope with the quieter, low activity days if she has her fun time too. Looking after the carer is so important.

There are are so many elements to what is going on with your f-in-l but the quotes you gave 'I'm tired' and 'I feel awful'...........those are familiar. As I said my husband has chronic fatigue due to his brain injury and we have used the advice given by the chronic fatigue service to help him manage his day. I really think this might help you. They can talk you through high drain and low drain activity and how to pace his day. You talk about him spending two hours at the pub, to be honest two hours is a long time to a person who is coping with sensory overload and fatigue. We are doing well if we manage an hour, and he likely to be quiet through a lot of that time, but he is still glad to be out. Even travelling in a car is exhausting. Usually I can read when my husband has had enough from his pallor and the trick is to leave before he is tired. If I was looking at this from my husband's perspective then I would expect after a session at headway that he would be wiped out the next day and would need bed rest or low activity, such as familiar shows on tv or audio books.

rnhrd.nhs.uk/uploads/files/...

The above is a good starting point for information (apart from the increasing by 10% after 2 weeks, that hasn't happened). We have been living with this for 3 1/2 years and we have got used to it. It's a different kind of normal and you can work with it. I am not going to load you with info here but am happy to chat to you more if you are interested.

[ExPat352]

My husband had his BI due to a cycling accident 18 months ago. He too was vibrant, sociable and never stopped, he cycled Alps, Pyrenees etc for fun! He is a different person now but we’ve managed to switch to walking in the woods & fields. He’s a little off balance so we have to be careful with the terrain, also peripheral vision loss which means he can no longer drive or cycle his beloved road bicycle. He now struggles in busy or new situations which give him massive anxiety. However, we had the hard talk; you either fight this & we still enjoy life (were early 50’s) or you give up and don’t use your second chance. For him lots of puzzles, sudoko, crosswords, lego etc selective tv - nature, quiz shows etc, (we never watched that much before as always busy).

If you can find a local headway group go to it. We’re living overseas but when visiting UK we popped into a local group and it was fantastic. There were a few guys there, one of whom was also a cyclist. We try to be happy with all the memories of before BI but we don’t visit them too often as it’s a painful reminder of what we’ve lost. My post is becoming rambling but keep searching for different stress free interests for him and stimulating television. Routine is good so a daily walk, a weekly library visit (I understand reading is difficult post BI, but it’s the getting out), a weekly swim, a computer class, support group visit, cafe or restaurant visit, pub visit with old friends? The more he can be persuaded to do the easier it gets, the anxiety is still there for them but he has to ‘live’ for the sake of himself, wife, children & Msybe grandchildren. Good luck, it’s not easy but most have one life, our BI survivors have a second chance of a new life.

[SpookyMrsGreen in reply to ExPat352]

Thanks for your suggestions. To be honest we have tried all of those things, and continue to try, but he does not respond. He cannot walk far without using his wheelchair, and he was always active before the accident. His interests were cycling, visiting pubs, socialising with family and making a nuisance of himself! Now he cannot physically do any of those things so it feels like he has given up on life. It is very difficult to motivate someone who doesn't give you anything, if that makes sense. He can't even tell us how he feels or what he wants to do, apart from saying, "I'm tired," or "I feel awful."

[lcd8]

Hi there. I completely agree with the other replies here. I know that BI can affect people in all sorts of ways and the effects can be awfully frustrating - for sufferers and their family/friends. But please don't exclude him. He needs people around him who care and understand enough to know he is different now but there is nothing he can do about it. BI isn't just a 'mood'. It affects your personality and how you think without you realising. Good luck.

[SpookyMrsGreen in reply to lcd8]

Thank you. We try to include him but it feels like more of a challenge as time goes on. It's a hard balance between doing something that keeps our children entertained, and something that he can cope with, as my mother-in-law still wants to be involved with us and the grandchildren as much as possible, so she basically has to bring him along with her. He does attend Headway day care 3 days per week but that is during school hours.

[Hipchick09 in reply to SpookyMrsGreen]

It is all very sad and difficult.My husband sustained a TBI affecting the whole of the frontal lob in early 2018.

He was vibrant, liked to go out, watched football home and away. We had a good life and the privilege of spending lovely times in our spanish 2nd home.

He now just wants to spend very long hrs in bed, minimal conversations, no motivation and very mean towards me.

I am his registered carer but sadly have had to move out due to his excessive hoarding taking over the home and because he insists on drinking and is very verbally abusive towards me after.

I am only 30 mins away and come down daily to meet his needs and spend time with him however I can as he is usually in that bed.

I am using my time away to try and mend by having my own space and the aim is to have a more positive relationship with him eventually.

He sees a councillor weekly for his drinking but it's not working and they wont do hypnotherapy because of his brain injury.

Our whole life has changed and it's all about us both trying to accept where we are within our marriage now. Not what we imagined it would be like in our early 60's but it is what it is.

[WinB]

Hi there, will first tell you about me and if any similarities to Pa in law ..I had a bleed on Brain and was in cuckooland plus a few illness's while in hospital. My Family used to talk to me but I made no sense. My Family sung songs from old days and my Daughter asked Sisters to include me in Conversations . I played OT's up and their answer was to put me in a home. I came home and Hubs got on to the hospital that done my surgery. I had Hydrocephalus and it was stopping me from doing rational things ..I had a shunt in and I awoke from my dream like state. So all I can suggest is if he likes certain songs play them or sing them, keep him away from moaners as his brain cannot take others worries show him pics. Talk happy talk only. He is in there but he might need something or someone to give him a nudge or help !

Good luck as we can be awkward but give him time and let him know you all Love him as you must do as you are on here. Talk to him about older times as he wont remember as some of us get short term memory loss ..so talk about his past and Wishing you all the best xxxx

[SpookyMrsGreen in reply to WinB]

Thanks for your perspective. We do keep talking to him, we look at old photos and ask him about old events, but he simply agrees with what we say automatically, there is no real understanding coming from him. He definitely seems to be in that dreamlike state you mentioned. He is currently seeing a speech therapist so we will see if she can bring him out of his shell a little bit.

[WinB]

Good luck Spooky, and Family check for hydrocephalus as that kept me in my own little world ..like in the film I saw dead people like my parents and Mum wouldn't talk to me and Dad said "Go away Your Mum will kill me if I talk to you" Dream maybe but I feel now I will meet them again xxx Not yet though lol Check his catheter if he has one in isn't hurting him..Good luck and hope he can get out of his little world xxxx If I repeat myself its because I often do nowdays xxx xxxx Chin up all of you

[WinB]

A letter from your Brain which belongs to another site about what brain has been through Long one ??? Hope it helps xxx Win

A Letter From Your Brain by Stephanie St. Claire printed on the Brain Injury Association of Carolina website may help you understand what happens with your brain.

As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, 'it's time to get on with life.' That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. When I'm getting into trouble I'll need your help more than I ever have before.

I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me.

Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.

What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it; I'm trying to get your attention in the only way I can. Stop and listen to me.

Love, your wounded brain