Every time I get to spend alone time with my mom I understand more and more the challenges my dad faces and the heartbreak my mom is going through. I have been kind of out of the loop with having to take care of my sick kids, and as I get wrapped up in my life again its easy to disconnect from everything that is happening just 6 blocks away. But, as we sat at dinner tonight I saw once again how painful this all is for her, and how much life has forever changed for her already…and the reality hits home. I thought it might be helpful to try to give you all more understanding, not only to help guide your prayers, but also because I know my mom feels incredibly alone…not because of people not caring or being involved enough! I can’t even fathom what it would look like for people to do more! She feels consistently and TOTALLY incapable of expressing the gratitude she feels towards all of you, and incapable of ever giving back in the degree that she has been given to! Its humbling to be at such a vulnerable place, so in need, and so incapable of handling everything yourself…especially when they’ve spent so much of their lives in the “giver” role. But, the reason for explaining is a similar dynamic to what we experienced in the hospital.
When my dad was at the U of I, the nurses would walk in and my dad would be so friendly, do the pleasantries, and then when they would walk out you’d see what he really felt or was capable of. None of the nurses could accurately assess the situation or determine how he was doing without our interpretation because he is such a congenial person by nature…even with a head injury in a hospital bed. So he would say hello, I’m feeling good, even remember names, with no one realizing that his capabilities didn’t go much beyond that. He was actually left once with instructions on how to order his own meals. They actually thought he could do it. So, when we arrived at 11:30am, he’d not had anything to drink or eat all morning. Even if he’d gotten the meal up there (which would NEVER have happened), he might pick up a piece of food, forget it was in his hand, then forget his tray was in front of him, and stare at the TV…no idea he should be eating. So no one would get an accurate picture of how he was doing. We had to educate every single nurse that came on duty. And a lot of that is because of his abilities to be congenial, engage in the pleasantries, and repeat back to people what they’ve said (“Rick are you doing good?”…”Yes, I’m doing good.”).
In many ways, even now, I get a re-education every time I’m with my mom, because I can get a very inaccurate picture based on his initial responses to me. He appears much more functional and “in tact” than he is. And he’s made such a recovery in ways. People are always shocked to see him and see how well he’s doing. Most are not expecting him to look as good as he does. And don’t get me wrong…we are GRATEFUL for all the rehab that has happened! He has come a long ways! But in terms of my mom’s reality, in terms of their marriage and what this is like for her to walk along side him, he is capable of so little interaction, so little “other-centered” thinking and behaving and little to no self-initiated relationship. For a couple that has lived their lives helping other couples/families experience richer relationships and pursue greater levels of intimacy, it is a real “death” to go back to a place of no relationship, no interaction…and then to realize that she will most likely never experience again the relationship they had worked so hard for is devastating. Her husband is gone, yet still here! Every now and then there are flashes of the man we’ve known, and there’s often more going on in his mind than he is able to communicate, but the brain connections that once allowed for independent, other centered relationship are just not working in the same way post-surgery. He lives most of the time in this ego-centric world, without the the filtering mechanism to guide his words and behaviors. He just repsonds with his immediate feelings or thoughts, which is charcteristically very child-like. And few of those words ever get verbalized.
My mother always joked about how she’d make a terrible care taker, but what I’ve always known is true, that she is capable of living outside herself better than almost anyone I know. She is fantastic with him! She’s compassionate, she’s creative in her responses and redirection when he’s confused or frustrated, she encouraging, but still real. My mom will often say, “How can I complain when he’s the one laying on the radiation table, all he does is go to Dr. appointments. I’m not the one dying.” And that is truly how she lives. But inside she is grieving a husband who has been gone for quite some time, and most likely will not return. I know she asks herself often, “Is this really my life?” Its so hard to wrap your mind around the fact that all of this is happening!
I hope that helps guide your prayers for my mom! She’s good woman, living to the absolute end of herself right now, and hurting so much. I wish I could save her somehow from having to walk through such pain…but I can’t. I have to rest in a promise that my mom has told us so many times:
“For I know the plans I have for you, declares the Lord. Plans for good and not for evil. Plans to give you a hope and a future.”