Advocacy and Survival

Sometimes, I just sit and cry. That’s when Bill is in the hospital mostly. People ask me how I have the strength to do what I do. “Caring for a spouse with your husband’s problems must be very difficult.”

It is. But living with any spouse with any disability has to be difficult. I am not alone in the caring for a spouse world. Brain injury and the loss of so many abilities that one had before is confusing and challenging for both the survivor and the spouse. The inability to use a microwave or stove or even read a recipe to make for dinner is very hard on Bill. He was a wonderful cook, and I miss his cooking. He misses much more and has learned to accept my cooking and helps me as he can.

Marriage Vows and Commitment

I believe marriage is a commitment. For better or worse was a vow. The attorney who filed the Medicaid and Power of Attorney papers for us when Bill was still in the hospital early in 2006, said to me, “It sure got worse fast, didn’t it.”

So that was a challenge right there. We were married less than a year, with many turbulent problems still active in our lives. I had much to learn, and learn it fast. Was I up to the task? I did not know, but did not know what else to do but try.

How do you care for someone with severe brain injury, a cognitive disability, who appears pretty darn normal? Answer: with a keen eye and paying attention. I had known Bill for a few years before we were married, and that is the first thing I learned from him. He was intelligent, kind, and had lots of answers for what I needed when I first moved to New York. I asked how he knew all these things, and he said he paid attention.

When I was the one of the two of us left with the capabilities and organization skills necessary to manage the system of the brain injury world and attain proper care for Bill, I started paying attention. An advocate has to learn the ropes, the language, the jargon and ineptitude in the system.

When someone you love is admitted to any hospital, I caution you all. Pay attention! Many people with brain injury do not have a personal advocate. NY has service coordinators who act as advocates for the state of NY on the patient’s behalf, and we are lucky to have services in this state. Many states do not have any. But only someone who loves this patient and knows them well can identify some of their problems. Share with the staff, seek their ideas, and keep many notes. You will be asked questions you will be too stressed to remember. Carry their medication lists, doctor numbers and emergency medications with you at all times. Add that notebook, calendar or journal you keep daily. It will be needed.

Teamwork

Bill and I have always been a good team. I do not know why, but for some reason, we work. Even with brain injury. He understands my migraine and back pain issues, and helps me when he needs to. To the best of our ability we are there for each other whenever we can. Sometimes living with brain injury is too hard for both of us. Then we call in “our team,” and they guide us.

If you are a new caregiver, remember there are services available to you. Each state is different, but do your best to find them. No one can do this alone. Don’t even try. Been there, and it just does not work.

Earlier this fall I made a call from the hospital in tears to my sister in law who got Bill’s brother on the phone. He literally ordered me to go home. I had reached a point where I was no good to myself or Bill. When I left that night I was not sure I would see him alive again. But I had no choice to go. I said a prayer as I kissed him and left him in God’s and the doctor’s hands. The ICU team pulled him through, and four days later they removed him from the respirator, and he slowly returned. He is still recovering from this last illness.

If you can afford a disability lawyer, I urge you to seek their guidance as soon as you can. The laws and needs change so drastically, that they often can help you find and keep services you might otherwise lose. New York State has the NYSARC Trust, and this can help to keep income in the home to pay for expenses your spouse will need. Every state should have this. You cannot afford to be in denial in the beginning of this process. Things have to be set in place, and trust your judgment and instincts. You can do it.

I am working my way through those stages of grief I introduced in the first article of this series. For both Bill and I our anger at the pain in our lives is still runs very high. We talk through it, and often laugh our way out of it. It is a long road to acceptance, but minute by minute, we move a little closer. We keep moving forward, and Bill agrees. That’s the only direction to go.

We have hung here for five years, both of us living with brain injury. There are some positive suggestions to be found on a website like this one, as well as local support networks. Please take advantage of the services you will discover, and don’t be afraid to ask. If the answer is no, move on quickly, because if you are an advocate, you will need the answers and support.