Have been lucky enough to visit with my husband nearly every day this week, and I am worried by some, what I would call delusions. They are violent in nature and he is convinced they really happened. For example he thought our daughter had got herself involved in a drug dealing gang and he had to break into a house and fight them to get her back.he said he had stabbed a man and the police arrived and arrested everyone, i wasn’t sure how to respond, when I said, you may have dreamt it,because she is at home and she is fine.she is 13.he became really cross with me, and said don’t lie to me,I know it happened.
I spoke to the staff nurse before I left,she will let the dr know of my concerns. I know his brain has been through so much, aneurysm removal,stroke, two lots of skull removal,hydrocephalus and a shunt inserted. 5 months on and he is being peg feed, still no spontaneous movement on his left side,his talking is getting better and he remembers things from years ago , but I’m not really sure what happens now. Who decides,no one seems to tell me and drs at the hospital say he is stable and they are really doing anything with him now.
Any insights would be gratefully received, I find myself feeling physically sick with not knowing what’s going to happen or what I should do. I feel awful for asking for help,when he is and has gone through so much,he is the one I would normally turn to, to get me through
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Doctors will not commit to say anything on positive recovery. They stated my husband will require 24/7 care. His behaviour was bad, even ripping stuff off wall, messing with pipework, escaping constantly, walking into peoples room (despite meant to be 1:1) i would have to keep him on phone, using sons phone to call hospital for staff to pinpoint his whereabouts. With peak of covid, they couldnt handle reason transfer to local hospital, 36hrs escaluation of behaviour, talking very angry behaviour, to the point he escaped and police picked him up, took him back to hospital. The virus and his safety really worked getting him home, and he had DOLS on him.
First 3.5months, sadly the behaviour my children witnessed was risky. Was risk to my self and it was risk to him. Basically if i wasnt who I am, he would still be in rehabilitation unit.
What i did, brought routine, structure, and everything is still repetitive, even same bed stories for my daughter (good job she loves the book),so he can hear on monitor every night, even now. He has to go bed same time as me or before me, as he walks around, however now is only to raid the fridge, so at tee, i do extra plate, to help with costs. Every meal home made, to support, behaviour, muscle, fatigue. Were over 6mths now, his memory on day to day improving, but massive progress from when he came home. It does improve. . However, I have to keep smiling, no negative face or tone of voice. Ive learnt to cry siliently, and smile because its a trigger for unwanted words.
The talking hes was saying which was bizarre too, I never challenged, I treated him like he had dementia, to prevent him esculating further, basically to prevent police intervention.
If your husband is coming straight home its going to be 100 times worst when hes home, im not going to sugar coat it. With virus on rise, dont leave that hospital until services in place, and you got names, telephone numbers, emails. I was left all on my own for 10wks, when services said they were going to do daily visits.
Until doctors draw up plan, its all unknown at the moment, i understand, but nothing will prepare you if he comes straight home, every part of day will be unpredictable and testing. I couldnt say how many times, i said to myself I cant do it anymore, then each night before bed, i felt guilty thinking that way, because hes fighted to be here. Our men are strong, your husband is there alright, stay strong, remain positive, i still have so much hope.
I could write so much more, but my Me Time ran out now, back to see what hes up too.
All visiting cancelled at the hospital. I really felt like he was benefitting from seeing me too. Sorry things aren't going well, I do think, from reading stuff on here, that all this is pretty normal, I remember reading on here one man thought one of the nurses was his daughter, even though his wife would explain that their daughter was only young.
My partner still has no right side movement or speech and is only just managing to hold his gaze and I can see that this is an effort for him. Even so I'm still not convinced that he knows me.
I know I'm not much help, but you know that our journeys have been very similar so I'm always interested in how things are going for you. Take care x
Gosh how sad for you all I am sure you have done most thing’s but can you skype or message your daughter while you are visiting your husband maybe if he sees her it will help him have peace knowing she is safe. Maybe he is just worried about her so by seeing her it might help him understand that she is safe. Please take care of yourself and try to keep strong. Love Liz xx🙏🌹
My heart aches for you. I haven’t participated much in this (wonderful) forum for awhile, but when I see somebody who’s experiencing the same anxious, frankly terrifying moments that I remember SO vividly from early in my husband’s recovery, I feel obliged to comfort and reassure the best I can. And what NewBeginning said is right, it does us no good to sugar coat it.
Yes, wild delusions are very common for lots of people with TBI, especially in the early weeks and months. It sounds like this is the first time you’ve become aware of the kind of stuff that’s really going on in your husband’s head, so of course it’s very alarming to you. But it also sounds like it has taken him quite awhile to regain speech?, so perhaps he’s had delusional thinking for quite awhile, but unexpressed. It’s scary to get a window into what’s really going on in there, the beliefs that people with TBI can be so frighteningly INSISTENT about.
The quick facts about my sitch: my husband is 70, I’m 65. He had a cardiac arrest 1.5 years ago (on a tennis court), along with a stroke. It took a full 30 mins to restore his heartbeat, his anoxic injury plus the stroke left him with severe cognitive and memory issues. His deficits are much more cognitive than physical, he can walk talk eat bathe shave, even his musical gifts and personality are all intact. His short term memory is still virtually nonexistent but there’s slight improvement, and there are baby steps of progress with his long term memory. He used to insist upon RIDICULOUS things being true (that his dad was a transgender tennis champion, that he himself contributed tracks for Beatle songs). These things sound funny when they’re not coming out of your own husband’s mouth, and you are f**king exhausted, and he is angrily arguing with you that you’re wrong and he’s right.
These crazy beliefs are called “confabulation”. They’re a classic TBI thing, and what makes my heart ache for you, plus worry for you, is that your husband is in a phase where they sound scary and violent.
I use the word phase because I do think certain themes come in phases. I wonder if speech therapists might agree that aggression and scary behaviors/thoughts are typical of early recovery, then they seem to calm down and often never return. That’s been my experience, THANK GOD, with my husband. When he first came home from two month of hospitalization and rehab, I was crying or truly scared at least once a day. More than once I had my phone in my hand ready to call 911 if things escalated and I felt unsafe. I never had to, but I just want to tell you your first loyalty MUST be to your dear exhausted self and your own safety. Is anybody else living with you who can help your own sanity and feeling of safety during his early weeks home? It sounds like his physical disabilities would keep him from any violent behaviors, but believe me, even HEARING explosive outbursts, insistence on crazy things being true, is a punishing thing to endure when it happens. I send you love, strength, and will end in a positive note:
Your husband will be so dramatically better a year from now you’ll look back on this phase and think holy crap, how did I ever endure it :)? In my husband’s case (and of course EVERY tbi is different), his moods have totally mellowed out, his confabulation has become way more mild and infrequent, and most importantly to me as his caregiver, he much more easily accepts CORRECTION. There’s also a huge increase in perspective (he understands and accepts that he has a brain injury and that his beliefs are inaccurate) and he has a deep feeling of gratitude, for his life and his family and me, that he expresses frequently. After the rollercoaster first year, we now have our new normal, a life that feels manageable and pretty peaceful. I was terrified and desperate early on, felt unable to handle it, wanted him GONE, away, please somebody let me outa here! Nothing, nothing is harder than the grind of caregiving. People would tell me it gets better and I doubted that was gonna be the case for me. But I’m here to reassure you that it really does :).
Just make sure you feel safe, have a plan in your head for getting away from him if he acts in any way violent. You’ll learn what triggers his angry insistence, and how to deescalate it by not arguing with him. I remember my husband’s speech therapist used to advise me to NOT totally humor him, but to just give him very sympathetic, calm correction. She said it’s important to validate how true these beliefs feel for him. They not only feel like actual memories, they get strengthened by repetition and BECOME actual memories, because his brain is trying to fill all the gaps. This made sense to me, and was helpful. You love and respect the man your smart husband was, and it’s so painful and horrifying to hear this crazy crap, hard to stay calm! You think of COURSE you’ll be able to appeal to his common sense and his logic. But nope. It’s soooo hard to accept, so completely bizarre to witness, but his common sense is temporarily just not there.
❤️ I wish you so much luck on this worst, hardest path for a spouse there is. Take breaks whenever you can, accept all the help you can! You will need company and respite. You’ll get through this! All of us whose husbands came home understand...
Thank you so much for taking the time to share your experience with me, it does give me hope to know there is light at the end of the tunnel, its just so bloody hard being in the tunnel.
My situation is that i am 47 and my husband is 57, we have 3 children ranging from 13 to 22 and they all still live at home. The children haven't seen their dad since the beginning of May, because of visiting restrictions in the hospital.
I haven't had any face to face meeting with a single doctor or even nurse to explain to me what is happening or even what to expect. i get to see my husband maybe 3 times a week for 1 hour at a time. i have a constant nervous ball of energy in my stomach and quite honestly don't know what i am meant to be doing. The children miss their dad desperately and while i have tried to be honest with them about what is happening, i don't think they truly understand that daddy may be different when he gets home.
I don't like to keep using this forum to vent my frustrations, and i am sorry if i bring anyone down,that is not my intention. I just can't verbalise how i am feeling at the moment and this is like a release for me. I really do appreciate everyones comments. Thank you
You're in the right place. Feel free to vent anytime. The nightmares/hallucinations unfortunately are not that uncommon. Our brains are trying to figure out what's going on and develop new neural pathways and make sense out of everything, which is also one of the great challenges being able to figure out anything. It can get, as you talked about, pretty intense. So it is not abnormal, but is very stressful to deal with for everyone for certain. I'm very sorry you're all going through this. Mine got better overtime and different therapies I've done. I'm almost 7 years post injury and still sometimes have nightmares. These are more apt for me to have after overdoing things or if I'm feeling poorly or stressed out.
What do you or can you do? - Move forward with your life assuming he may not improve from where he is right now. This may sound harsh or unfeeling, however what this can do is give you a starting point without unknown expectations or outcomes and allow you to at least form some kind of plan to live life going forward, if this turns out to be the case. More likely would be that things do improve over time and then life gets easier. How much will he improve? No one knows only time will tell. Will he return to his preinjury self? Most likely not. Our old self is gone and now it is about learning the new person that has some of the old parts with some of the old parts gone. New experiences can be wonderful and joyous and we'll always miss our old self.
You may also find some very free helpful information for you and your children to help in understanding what is going on on the non-profit website here: headway.org.uk/about-brain-...
How are you and the children, how is your husband. I understand likewise its a heartbreaking and distressing time, but just wanted you to know im thinking about you.
Thanks new-beginning, for thinking of us when you have so much to deal with yourself. I hope you and your family are keeping well and that things with your partner are going well.
My husband has just been transferred to a specialist rehab unit, literally yesterday afternoon. I still don’t know what they can achieve for him or whether he will ever move anymore than he can now. The last time I saw him, he pulled the bed covers off himself with his good hand and I was shocked by how thin his arms and legs have got, and when they hoist him into a chair he barely manages 15 mins, he is just crumpled to one side.
The delusions are still on going and I did think that maybe a Skype with our daughter would help, but it didn’t go well. My husband thought she had changed her name, and continued to call her this new name, she giggled because she thought he was playing around and he got really cross with her. She was so upset, I just spent the rest of the evening cuddled up with her on the sofa whilst she was crying,trying to explain that daddy has had a lot of operations on his brain and that things are getting all jumbled.
She kept saying, he looked so sad,it’s doesn’t look like dad. Honestly I felt a physical pain like I had been punched in the chest, I am so scared so what’s to come and how we are going to cope as a family.
Sorry for such a long post, another outpouring. This forum is a godsend.
I totally understand your emotion and sadly my son (15) has had to witness situations and delusion no child should see, along with my 2yr old. I refused the brain injury unit, purely nhs staff demonstrated they couldnt keep my husband safe, but he is mobile so reason i had to get him home. Its finely showing good progess however our first week with consistency, since 31st march and really hard juggling work on top now (still mortgage, bills to pay).
He will improve, you have to keep hope, its the only thing that has and continue to keep me going x
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