Absent family of an adult TBI survivor: How can I... - Headway

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Absent family of an adult TBI survivor

mindful_animal profile image
15 Replies

How can I help my husband deal with the fact that his family has been completely absent and disinterested, other than superficially, about his life changing accident ?

He remembers an idyllic family, which is not what I recall, but I was not very close to his family.

He has been supported in every sense by me and my family, which he is very thankful for.

I would like him to get some closure but do not know how.

Whenever he talks about his rehabilitation to his mother she changes the subject or asks silly, irrelevant questions.

Any advice welcome.

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mindful_animal
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15 Replies
Pairofboots profile image
Pairofboots

Hi mindful. It is admirable the support you have given to your husband. I am sure that you wouldn't have wanted it to be any different.

Regarding your husband's family, just playing devils advocate. Does it make any difference in the scheme of things what part his family played in your husband's rehabilitation? It sounds like you are aggrieved about their lack of interest.

There is a danger of driving a wedge in the relationship your husband has with his family that will be not welcomed by your husband or member's of his family. In doing this you are asking him to choose side's. This may not have the outcome you would wish. 🍀

mindful_animal profile image
mindful_animal in reply to Pairofboots

Hi Pairofboots, thank you for your reply. You are correct that I would not have wanted it any other way in terms of making decisions but, as any caregiver, I would have welcomed and would still welcome any offer of support so I can have some time to myself. The problem why my husband's relationship with his family matters is for him, not for me. He has mentally regressed to an adolescent status and seems to have an innate need to have his mother close (normal, perhaps). The problem is that he recalls his family as a perfect family prior to his accident, which it never was. Now there is a big expectation gap... I am supportive of him having a relationship with them if he needs to / wants to, but I do not wish to be involved. He finds it unthinkable or difficult to process that there are 2 separate families (the one of origin and ours) which do not need to mix. Thank you

Pairofboots profile image
Pairofboots in reply to mindful_animal

I appreciate that you do not feel that there is a need for the two families to interact. Whether you husband should remember the family dynamics prior to his injury is somewhat gazumped by his current understanding of the relationship he has with his family.

I remember my own dad following a stroke, my step mother couldn't care for him, no fault of her own, so she arranged for him to live in a care home.

In her opinion, he just garbled what he spoke about, and really wasn't with it. My own opinion was very different. What he spoke about made some sense, in that I understood from his history, this unfortunately preceded his marriage. My step mother couldn't know what he spoke of.

I wasn't in a position to up sticks to take on the role of carer, due to distance.

I did explain what my father spoke about, but a bit like a bad joke, you had to be there to understand the word's and movements he made. No matter how much explanation, she couldn't comprehend, again no fault of her's. Did it hurt when she spoke about him? Yes. There were times I just wanted to shake her, I didn't.

I think what I am trying to say, I had to soak up her ignorance to maintain my relationship and her's in order to benefit my dad's relationship with both of us.

It wasn't easy, but apart from disassociating her, it was the better of the bad choices open to me.

I now, following my own stroke, may well be traveling down the road of my memory loosing the current fix in time, and it is worrying. 🍀

mindful_animal profile image
mindful_animal in reply to Pairofboots

I am sorry, truly, to hear about our stroke and the worry and anxiety this is causing you.

I can honestly say that your sharing of your experiences is helping me to think outside of my mental box, which I have perhaps got used to since the accident.

Thank you for sharing personal experiences. I wish you to maintain the clarity of thinking and memory that you are displaying.

🤞

DTBI profile image
DTBI

I am a TBI guy and understand your husbands frustrations as it is a common. Families and friends don’t appreciate how different it is to live full time with someone who has suffered TBI. The way I dealt with it was to appreciate daily there are millions of people in worse conditions than I was. Hope it improves for you all. x

mindful_animal profile image
mindful_animal in reply to DTBI

Hi DTBI, thank you for your perspective. It is difficult for me to interpret my husband's thoughts and try to understand what he is really feeling and may be scared to share with me. I wish you all the best also in your journey. x

Hello mindful

I’m sorry to hear about your family situation. It reminds us how life changing injuries mean changes to the whole family’s life. I think POB has a good point in that it’s hard to bring about change in others relationships. As a retired child and family psychologist I know family dynamics are complex at the best of times. It sounds to me like the support you have given your husband has helped you both begin to accept the changes ( forgive me if I am wrong) but that your husbands family are as yet not able to come to terms with things and may still grieving for the son they think they have lost. If they recognised this they may seek help. They may still be working hard to avoid or deny what has happened.

I have some sympathy with them for this but it is a time when your husband should be at the centre of the family’s care and concern. It’s very hard to change others but you can change your response to them. It’s also so so hard to see this happening to someone you love.

On a personal note my son has a severe brain injury and is still in hospital after nine months. Similar to you did dad ( we are divorced) cannot accept the changes in T. He can’t face visiting him, has removed all his possessions from his house and is pessimistic at every turn. As a family we know he is just not coping but we also need him to turn things round and be there for T

I wish you all the best and hope in time your husband’s family come round. He seems to have what he needs now in you and your family but he is also part of his. Take care

mindful_animal profile image
mindful_animal in reply to

Hi Crazy Bee Woman,

Firstly, I am sorry to hear about your son's condition : I wish you strength and a supportive circle, be it relatives or friends.

I do accept and think that my mother in law is in denial about her son's new condition; the problem is that she never once called me to ask how he is, so she chooses to take for good what he tells her, from his subjective point of view.

The problem is that my husband needs (I think) to feel that his own family is there to support him; instead, he has received that support from my family and frankly nothing from his.

For me this is fine.

But he wants to understand the reasons and I am not sure he is going to get the answers he seeks.

He will meet his mother in a few weeks for the first time in nearly 2 years : he is anxious about how to manage the encounter and conversations.

Any change unsettles him.

I told him to just see how he feels when he sees his mother again and go from there.

On one hand he is anxious about asking why she changes the subject whenever he talks about his situation (she is effectively rejecting him).

On the other hand, because of his upbringing, he feels guilty about the thought of not having a relationship with his family.

Thank you for sharing your situation, it is helpful to know many are dealing with similar challenges.

I wish you and your son all the best for the future.

Take care

Leaf100 profile image
Leaf100

Hi MindfulIt is a tough boat to be in.

I have a family member who basically ignores me,except when they want something. And they have told me outright to never ask them for help, and if they do speak to me do not want to hear anything about my situation. I do also have a close relationship with another family member, who wants to have more contact with them than I do.So, not the same dynamics exactly but I have some idea of the terrain.

It is up to your husband to find his way of coping with their lack of interest.

It is one of those things you cannot do for him, and you run the risk of causing issues if you wade in. And, there is no win in going there.

Sadly, some people are just going to ignore it and distance themselves, and may have nothing to do at all with a person after their injury.

You can not change them, nor should you try. If he wants to talk about it, listen, but do not say negative things about them - he is allowed, you are not. (Though you can agree with what he says.)

It is going to be hard for you, because you have your own feelings about it, and want things to be better for him.

You do not want to make him feel worse, have your reaction to their behaviour cause more stress, etc. Neither of you need that.

With some people, keeping it very superficial may actually be for the best. So, remain civil and polite, and do not share personal things with them, either. In this way, you may be able to maintain some semblance of polite contact now and then. He may need them , even just how they are, and will understand them on some level you can not.

Just let it be. Stay focussed on the positive. Just let him deal with them and find his own way. He may never get closure. Often in life people do not.

You both have a lot to go through, keep focussed on the rehab and the stuff that really matters.

They get your polite 'I'm chatting to a stranger on a bus' face. That isn't quite it, but I think you can get what I mean. They aren't worth more of your effort than that, and they are worth that much effort for your husband's sake.

Some things just are, and are sometimes painful, yet the best we can do is find ways not to suffer over them. You can not control others, and in this case the relationships are his to deal with. And, he needs that degree of independence from you.

Really, this is another way to help, and earn respect from him - knowing what to leave alone. This is one.

Leaf

mindful_animal profile image
mindful_animal in reply to Leaf100

Dear Leaf,

Thank you for your comprehensive and helpful advice.

Reading your message I was reminded of what my sister keeps telling me, to let him fight his battles (at least with the family) as this is part of his path to become independent and find a new balance in his life.

It is very difficult to watch, especially having tried to protect him on all fronts.

I do recognise the wisdom and reality of your advice.

Thank you

Leaf100 profile image
Leaf100 in reply to mindful_animal

You are welcome, Mindful. (It took me some life experience to figure it out.)

Nafnaf87 profile image
Nafnaf87

Hello mindful_animal

When I had my accident (Glasgow scale 8 severe brain injury with other damage) 23 years ago my then wife got rid of me and I lost my business. I was 33 years old.

I was lucky, my father took me back into the family home. The only proviso, I was expected to go to work with my 2 brothers (family business) to continue my recovery and rehabilitation.

Very slowly I improved and in about 2005 (40 years old) Dad said 'come on, you need to get more involved'. I did and over the next 10 years I became involved in all aspects of the business.

2015 Dad passed and at first things were alright. I later realised my remaining brother was sabotaging the business and I had to do something. I did, I took on the IT and turned things round.

2 years ago the brother went nuclear on me with the support of my mother - I lost my job, my directorship and my business. After 20 years my mother took me to court for trespass and had me thrown out of the family home.

This was at the time of Covid and the first lock-down. I went through emergency accommodation and all sorts and for 2 years have been in social housing living on Universal Credit. However I stumble on, just trying to put one foot in front of the other. I keep smiling as best I can in the knowledge at some point I will laugh loudest and longest.

So, I know it is incredibly hard but ignore the family, be as supportive as you can, take help anywhere else you can find it and keep your head high.

Best wishes

Michael

mindful_animal profile image
mindful_animal in reply to Nafnaf87

Dear Michael,

I am heart broken by the experience you have described.

I know it is not unusual to have spouses break up after a life changing event such as TBI; what is sad and upsetting is when a family leaves you in the lurch or worse, tries to harm you.

I am very sorry this has happened to you.

I do not know you or anything about you, but I can not also make sense of how some people take advantage of someone in a vulnerable situation.

You must have a strong character to face all these challenges with the attitude you describe.

I genuinely wish you the best for your future life and I do hope you have the last metaphorical laugh.

With best wishes

☘️☘️☘️

Painting-girl profile image
Painting-girl

I think Leaf put it really well. If you keep to superficial contact, it keeps the lines of communication open, which can then hopefully be healed in the long term. Anything that forces decisions under the stress of the current circumstances, risks a permanent rift and additional pain for everyone, which no-one wants. I think it must be very hard for some parents to admit that something has happened to their child, as if by ignoring it, it hasn't happened. Must be really easy to be angry to be on the receiving end of it though.

Plus as we all know, hardly anyone out there, let alone parents, actually really 'gets' the consequences of brain injury, I think we live in a society where so many things can just be 'fixed' that we have less mental resilience to cope with things that don't have solutions.

I'm thinking something along the lines of 'you can't change someone else's response to to a situation, but you can change your own'. Easier to say than do though I'm afraid.

So sorry for what is happening. Do keep posting on here for support x

mindful_animal profile image
mindful_animal

Thank you painting-girl.

I agree with you that I should be the one changing my response but it is not easy when you are exhausted from the priority demands of the rehabilitation, support, keep working etc.

I recognise that there is a protective mechanism in pretending that nothing has happened : it is pure denial and quite convenient.

I appreciate not everyone is capable of facing tough situations.

One thing I am unable to agree on for my circumstances is the lack of understanding of the consequences of TBI : I have been doing extensive research on the possible symptoms and outcomes of TBI since the date of the accident and shared the most relevant and easiest articles with my in laws.

My intention was to prepare them for the new person they would be interacting with.

They totally ignored my emails (never responded, not sure if they even read them) and never asked any question.

This, unfortunately, creates much resentment from me.

I know it is not in my best interest but ignorance is no excuse, especially if it is by choice.

Many thanks for providing a safe space for all to share.

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