Family and Friends

I have met a few other post surgery patients and despite differences in our cases there are some consistent trends. These trends are familiar to each of us and little is needed before we get that "Ah-Ha!" moment of understanding when we speak together. Each has expressed that despite the love and support from family and friends, there are times that care takers become frustrated and struggle to understand exactly what we are going through. This can occur at any point in recovery as I have been told that the physical damage from the surgery will take six months to heal, damage from the tumor and functional healing will take longer. (Up to years later.) For care providers and friends this can be discouraging. I have taken time to write down a few of the commonalities to help. If you have a loved one living with a brain tumor or even post surgery you may expect any of the following things to occur, at any time during the healing process.

1. Personality changes. This can mean most anything from becoming a more kind and patient person to a pillar of the community swearing like a sailor. For me, it means I am much more patient as a general rule but I do have rapidly changing emotions and can become irrationally angry for no reason. I have to be aware because I will lash out verbally at others for sometimes no discernable reason. Being tired or overwhelmed will intensify these reactions.
2. Indecision. Please don't ask us to make a rapid or important decision. Really, please don't. Much like a deer in the headlights sighting danger, we absolutely panic and freeze up. This is so severe that on one occasion I freaked over what to serve as dinner. I had to ask for help because I could only think of dinner the night before. My kids could have ended up with rice, salad, and chicken for weeks had I not had help from family and friends. Not the end of the world until you ask your spouse/child/parent "What movie do you want to see?" or "What's for dinner/What do you want for dinner?" We don't know. No idea. Our brain is rapidly trying to figure out what dinner is, what it means, and before you know it our little brain is fried.
3. Memory problems. This can work for your benefit or against you. If you love to tell stories, go right ahead. Often I feel like a small child who loves to hear the same movie played on repeat for hours, any parent of young children knows what I am saying. (Frozen anyone?) You think you already told me this, go right ahead and tell me again, maybe I remember and maybe I don't. I will give one word of caution, if it is your parent or spouse who had surgery, when we are done healing we will remember, make sure you won't be in a lot of trouble. Also, if we don't remember please understand it is not disinterest, we really and truly don't remember. Our minds are busily engaged in healing from a life threatening situation.
4. Problem solving. Not going to happen. Nope. Just not there. Right now, I can follow simple individual instructions. Anytime something interferes with this, too bad, I can't change things unless I have someone to talk to about it and help me work through solutions. The other day I made hotdogs and salad for dinner. Things were great until I realized we had no ketchup. It took talking things through while I bordered on a panic attack to realize I could have someone go to the store and get more in time for dinner. Crisis averted.
5. Nuance. Subtlety, sarcasm, suggestions are just that. I no longer pick up on the unspoken languages of our culture. My mother in law was freaked out when my husband began to give me simple, clear, and consistent instructions on what to do to help prepare the kids for bed. In concern, "Aren't you being a little harsh?" Nope, its the only way I understand what I am being asked to do. Comments such as "The kids need to get ready for bed." will go unacknowledged. What goes through my mind? "Yes, yes they do." No follow up, no personal involvement. No awareness that as mom I am needed to help facilitate bed and bath time.

This is just a short list and should be individualized to your loved one. Our primary job is healing. Balancing the needs of loved ones is important but there are times we will not be capable. Know that inside of all of this, your loved one is still there. Also acknowledge that things will never be the same again. Work to make that a positive. If your loved one is still living with their tumor, these changes should be noted and reported to the doctor as they can indicate changes in the tumor. For yourself, use self care techniques and reach out to support services as needed. Find out who these individuals are before they are needed. A sick doctor can heal no one.

If you want a great example the following cartoon would completely freak me out right now. It would end with tears and enormous upset if personally experienced.