Caring for a brain injured person is a tremendously difficult task, yet for the people who decide to bring their loved one home it is a blessing just to be able to do so. When we were being advised to place our then 18 year-old daughter, at the time on a ventilator, a feeding tube, and without much movement of any kind, into a nursing home, there was not a moments hesitation. The answer was no, she is coming home with us.
While I know there are great nursing homes with caring, knowledgeable staffs, for us we thought that she would feel isolated and out of place. Plus, we also felt she needed as much therapy and interaction as possible and we did not think she would get the levels of personal attention we wanted for her in a nursing home.
But, I do not want to gloss over the scope of the challenge. It is scary, especially in the beginning. We felt we had a head start because my wife had lived with my daughter 24 hours a day in the hospital for the entire six months. She had been doing a lot of the care as the nurses and aides trained her for coming home. Yet, when we were home for our trial visit and for the first weeks it was still stressful when something happened a bit out of the ordinary. My wife's cousin is a nurse and since she just lives up the street she was kind enough to come down a few times when we had concerns. We also had a nurse assigned who was then making weekly visits and was more than happy to answer any questions in between visits.
One of the biggest factors that contributes to the stress is the lack of sleep. If your loved one is using Depends then you may need to get up in the night to change them. If you have other equipment such as a pulse/ox or feeding pump then you may get alarms going off throughout the night. What I used to tell my wife was to try to sleep when my daughter slept instead of using that time to straighten the house, or shop on Ebay. I quit giving her that advice, not because she was getting more sleep, but rather that she never paid attention to it. Yet, she would sometimes fall asleep while sitting up.
The most common piece of advice you will hear is also probably the most difficult to follow through on. That advice is to take time for yourself. Usually more easier said than done.
Our recommendation is to try to ease into it. Set up a support system that will gradually build your confidence so that you feel comfortable letting someone else provide you with some respite care. If you have someone offering to help, let them come and learn how to care for your loved one while you are there. Then let them do it on their own a few times but with you still around if needed, maybe while you are out in the yard or napping. Once you feel comfortable, you can get away for some respite time and enjoy by not worrying the whole time you are away.
You really do need to take care of yourself because the challenges are constant. There are ongoing stresses like fighting with the insurance companies, finding and keeping a good cadre of therapists, dealing with all of the medical complications that come with a brain injury. Other stresses will come and go such as flu bugs going around, finding someone to make DAFO's, depression, and more.
Right now for us, the obstacle that our family is facing and causing the most stress and guilt is to keep things on schedule and to stay aggressive as we can in the treatment. We want to do so much in the day yet it is hard to try to do it all. Then, we feel bad when we do not get to everything. We have a great team of therapists and they have many ideas for us to work on throughout the day. Sometimes though we get in rut and let our focus shift to the other challenges in our life and we have to stop and make sure our primary focus is on Ashleigh's recovery.
Some of the stress and concern is probably misplaced. Frankly, our expectations are probably a little too high for the amount we can do in a day. For one thing, as you may have found in your loved one, people with brain injuries tire very easily. We try to let Ashleigh rest up before her therapy sessions so she does well in the session. For us, meals are an ordeal. It takes about an hour for Ashleigh to eat each meal. Then she is very tired afterwards and usually takes a nap. So as you can see, the day goes by quickly.
Depending on your loved one's injuries and where you are in the recovery process there will be different stresses. While I can not tell you what those stresses will be the thing I can tell you with certainty is that there will be stresses. I would be willing to bet on another certainty and that is if you are a caregiver you will gladly endure all of these stresses just to have your loved one alive and with you. Make sure you do some things to have some fun as well. We tell jokes and do dorky, dumb things. Anything we can think of to get Ashleigh to laugh.
So to reiterate, try to get some rest, accept all of the help offered, and make sure you relieve the stress. You have to be ready for the long haul because unfortunately recovering from a brain injury is like a marathon, not a sprint.