I was wondering whether anybody who's been through a TBI themselves could offer me any tips or advice for when my other half comes home from hospital?

2 weeks ago, he had a fall and suffered a fractured skull, contusions and a subdural hematoma. He's made a good recovery and is now "medically fit for discharge" and is coming home on Monday morning.

The problems he has at the moment are severe hearing loss on one side (partly caused by the skull fracture which went down into the ear, and partly by his facial nerve being damaged which is causing palsy); cognitively he seems good but may have problems with "higher level functioning" apparently. We've been told he will most likely suffer from headaches, tiredness & possibly memory loss.

My question is - how can I make things easier for him once he's home? What worked well for you from your spouse/family, or what would you have liked them to have done differently? I know everybody is different, but I know next to nothing about TBI...should I just be let him be and let him set his own pace? Or should I encourage him, try and get him into a routine and establish a structure to his day?

I should mention that we have a baby so it's not going to be easy looking after both of them, and I'm mindful of him needing peace and quiet which isn't always easy with a one year old!

So sorry you have to deal with this, prayers and well-wishes sent.

First thing I would tell you sounds simple, which is maybe why it got overlooked in my case. Keep an eye on him over the next few weeks/months. Brain cells take time to die. Symptoms may not show up for a while, often long enough that no-one makes the connection. Not just obvious medical issues, but look for personality and behavioral changes as well. For example, if there was frontal trauma involved look for unusual anger responses or irritability.

I wish someone had done this with me. I could have avoided a lot of pain and trouble.

jamiesgirl,

Congrats on your determination to be the best caregiver you can. He is a lucky man.

Have you checked out the availability of a TBI caregivers' support group? They may be associated with a TBI Support Group for the injured person. Having some one who understands how your day is can be quite helpful.

He may also have a case manager at hospital who can help you with these issues.

The TBI Survival Guide at www.tbiguide.com is a great resource.

There are a few spouses here that hopefully have some ideas and support for you.

My best to you.

Thanks for the replies

I'm in the UK and it's been so difficult getting any information from anybody at the hospital. When he's discharged he will become a day patient at a neuro rehab unit, which I believe will be once a week, and I guess I'll be able to discuss this kind of stuff with the occupational therapists there.

I just don't know which way I should play it when he comes home - indulgent partner who lets him stay in bed all day if that's what he wants (he would do that at the best of times lol), or slightly more bossy partner who encourages him to do things. Obviously I wouldn't force him to do anything he's unable to or not ready for, but I just don't know to what extent I should encourage him to get back to normality (whatever that will be for us)

My experience is different, it's my 14 y/o son, but you said something that struck a cord with me. "Normal". I'm struggling to deal with what our new normal is too. I'm glad to see that you're addressing that so soon.

My thoughts and prayers are for you and your fiance. I pray that we (caregivers) are blessed with the patience, strength, wisdom, and humor to be the best advocate and friend for those who are injured.

I would say let him do what he feels like doing, at least until you see some kind of improvement with him cognitively. Of course, follow his own medical practitioners' advice over mine.

My own Dr. told me to do what I "felt like" doing... that I had to pay attention to my body and if I felt like resting to rest and if I felt like I could do something then I should do something. The biggest problem with me is that I always want to do something and I've really had to pay attention to whether doing something could cause me to overdo and that causes me to have a degrade in cognitive functioning.

Brain injuries take a lot of energy to heal from. And the body takes that energy from our reserve energy. So, people recovering from brain injuries just don't have the same amount of physical energy, or mental energy. So then when we try to do things, we tucker out super fast. In addition to our brains creating new neural pathways and healing, just the use of the new ones can take more energy than the old ones, so that's even another reason why we tucker out - the neural detours just take more energy to use.

I hope this all makes good sense.

At the same time, a healing brain does best with a structured schedule. Same time to bed, same time to rise, same time for meals etc. is a very good way to help the damaged brain to heal and manage.

My doctor said to stay "sub-threshold" of symptoms as much as possible during my recovery, which has been very good bedrock advice. Other good advice:

- The first stage is mental and physical rest until symptoms are gone (or at least reduced substantially). During this period, light activity is OK so long as symptoms aren't triggered or exacerbated. Eventually he'll be able to increase his activity level, but he should promptly back off if he starts to feel worse (don't push through symptoms). Proceed in increments / baby steps. Note: PCS symptom onset is often delayed by a few hours or even a day; it may take him a while to figure out cause and effect

- Be patient and optimistic (rinse and repeat as necessary). The brain will recover if you give it a chance. Try not to worry about timelines for recovery. Be confident in his eventual recovery - he will sense this (just as he will sense worry, fear, pessimism on your part)

- Keep stress to a minimum (look for concrete ways of doing this, such as getting lots of rest, good nutrition and hydration, meditation or prayer, taking a hot bath, creating quiet + pleasant surroundings, etc)

- Create a good sleep environment (dark, quiet, comfortable bed, good temperature, regular schedule, fresh air, comfortable PJs - whatever works) - and keep in mind that he may need a lot more sleep than usual for a while. Sleep is very important during brain recovery

- This might not be for everyone, but I created a basic spreadsheet that allowed me to make notes and track my progress (including a system for rating my symptoms and overall well-being from 0 - 10, tracking my walking times, cognitive work, mood, etc) - I have found this helpful. For one thing, it has shown me how far I've come (very far)

All the best - hang in there.

Rest and time! Don't push it. Pay attention (as best you can) as to what seems to trigger him if he starts acting differently-when symptoms kick in.
AND, be sure to get rest yourself. When baby lays down for a nap-try your best to get one. You can't take care of both of them if you are exhausted.

Even though I don't have TBI, I have been a caregiver. All the posts you received have offered some good advice. Write down anything unusual that occurs with his personality, so that when you go back to the therapy, you have that record. I know how hard is it to have patience. That is the best advise I can give you as a caregiver. Also take time some way some how for yourself during each day. The care giver, "you", need a space for yourself. I hope that you have family and friends near by to be in your corner. I hope your loved one recovers fully. Come back here any time to talk. NT will be here for you. I will keep your family in my prayers. ginnie

Whatever you do, don't let him him think that he is an obligation to you. Ensure him that you are helping him because you love him and need him, not because you just have to...

My husband had really difficult time adjusting to the situation, which is very understandable. And it was really stressful for me - I felt just like somebody he can't get away from....until wesat down and talked it through, but before that I was really depressed,and felt alone ( I don't have any family living close to me). I think that really slowed my recovery back then...