Partners

[DMreader]

Me and my partner have been together 23 years, last year in September she fell down the stairs and had a major brain trauma. She was in an induced coma and had the left side of her skull removed to allow swelling. This was put back in in February. She has made a recovery that none of us expected, physically she is doing really well. We have some issues with her higher executive function. She was kicked out of hospital when Covid started, and I had to cope with her for five and a half weeks without any support. Then we started getting Start team visits, video SLT calls and video calls from the Doctors. My partner did not want to interact with any of them and now all have been dispersed. You can’t help someone who doesn’t think she needs it. Physically she looks like she has had a stroke, but can walk, talk and is doing very. However she was always a cleaning nut, since she has been home she has got worse with cleaning. She won’t let me cook because I make a mess, she won’t let me wash up or dry because I don’t do it as good as her. I feel stressed at home and not comfortable in my own home. I am taking a two week break shortly which I had booked to go to America to friends, this has been cancelled but I am still going away to my family. Because if an incident this week where she was having a moody, her adult children are saying I should take the two weeks to try and understand her needs more, they have said some really hurtful things and that I am selfish, I am feeling like I’m having a nervous break down and can’t take much more of this. I keep breaking down at work and crying. Where is my support? Is this what it’s going to be like for the next twenty years?

[cat3]

Does you partner have parents or siblings who can stand in for you whilst you take a break ? And how involved in their mum's care are her children ; they're not entitled to accuse you of selfishness if they're not prepared to step up themselves.

If your partner refuses your help, and that of the professionals, but is capable of feeding herself and attending to her personal needs then do you believe she'd be safe to cope independently whilst you take a break ? Her behaviour is classic and something I fully empathise with, but brain injury survivors can adopt a territorial, almost selfish, attitude to the exclusion of those who care. The answer is often 'Tough love' and an ultimatum.

I drove my caring partner away when (with hindsight) I was still physically and emotionally unstable, but insisted I needed space and would cope just fine. I believe my daughter, knowing I was fiercely independent and that arguing was futile, told him to go and take a break and, though she and my son worked full time, that they'd check up throughout the day by phone and call round evenings and weekends.

It taught me how life was preferable with him around despite my ability to cope pretty well. But I learned there was a price for his company ------------------and it was 'sharing'.

So could your partner cope alone DM and ,if not, is there anyone who could offer support for your partner whilst you took some much needed respite ? x

[DMreader in reply to cat3]

Hi cat3, her mum is 100. I never knew her dad he died before I met her. Like all the firsts, it would be a worry, but yes I think she could manage on her own overnight, with calls to make sure she had turned everything off and locked the doors. It was the kids saying she needed someone there with her overnight but they now seemed to have changed their minds and are ok with not staying alone now. She is very territorial and has driven everyone away, as she doesn’t want the mess or the worry of them being there, so now they come and take her out for an hour here and an hour there so to speak. The last time I took a break her daughter stayed over for two nights, that was enough.

[cat3 in reply to DMreader]

The need to control everything around us is often a symptom of insecurity. An ABI or TBI can be psychologically unnerving and create feelings of uncertainty and foreboding, so keeping busy-busy-busy is handy for keeping unwanted thoughts at bay.

It can also be about proving to ourselves we can cope exactly as we did before the brain injury........... almost a denial of the event. But it can become our only focus, driving others into thinking we don't want them around. It's only when partners have been driven away through sheer neglect that we notice the void and are forced to reconsider priorities.

Your lady is coping the best way she can, but with a little time and space I hope she might find some perspective. Occasional distancing is healthy in any relationship.

I was way off the mark considering a100 year old helping out wasn't I DM ! But if you can start by taking an odd night away with one of the children staying it might reduce the strain, especially if you can both make time for talking to one another.

Good luck in this tricky situation ; wishing you both all the best. x

[DTBI]

I had the same TBI six years ago, coma, left side of my skull removed, and I thought I was back to normal within a few months. Naturally this wasn’t true, I can never get back to ‘normal’, I am a different person.

Being different is difficult to deal with every day, but it took me about 3yrs to fully understand what was permanently wrong with me and how I was going to adapt to it. What I have always remembered, which stops me feeling sorry for myself is that there are millions of people around the world worse off than me in horrendous circumstances. Whilst I appreciate it it tough for you, as it was for my wife, she will get better to live with over time. Good luck with it all👍🏻

[DMreader in reply to DTBI]

Thanks for the reply

[TaIaV]

Dear DM,

I will let others give you advice about what worked in their similar cases. I do just want to assert that it is clear from what you describe that you need to attend to restoring your own well being. There seems to be no reason to to penitent reflection that the children have suggested. Rather, I humbly suggest that you rest and establish some distance from your situation. Only then, you can write down the very simplest clearest picture of the situation. - What your objectives are for your partner and for yourself.

- What is needed to achieve those objectives.

- What is not aligned with those objectives now.

- Which of those gaps need to be addressed immediately.

Sometimes the To do item is a change in expectations. Your partner may well "outgrow" some of these annoying symptoms. In any case, you clearly cannot change the root of the behavior. If you keep at it, with some of the techniques described by Cat, you may be able to establish boundaries that make being in your home more comfortable. She may finally accept professsional help. see improvement. Until then, the only way to feel better is to stop expecting other behavior and work around her irrationalities.

Resetting the understanding with the "children" is one of the things that may or may not make the priority list. If they are reasonable people you might be able to inform them of the objectives, your commitment and plan, the things that make life for you as the caregiver extraordinarily difficult and how they can help. I suggest making this about you informing them rather than a request for their approval. They need to hear all this and take it in without having their previous stress-, lack of awareness- and anxiety-driven accusations get in the way . There is time for them to express themselves to you at some other time.

My heart goes out to you. You seem like a great partner and I trust that things can get better for you soon.

Best,

Taia

[DMreader]

Thanks for that. I am going away for the full two weeks. I badly need this break, I feel like a nervous wreck and hate looking at my phone in case there is another “family chat” I have been so hurt by the comments made and can still burst into tears at the mere thought of the comments, they play around on my mind, stops me sleeping and I just feel knackered all the time. My job is full on and with Covid we are short staffed at one of our busiest times stress, I used to say bring it on, now I just want to run away.