Friday, September 21, 2012

Care Packages

I skyped with my daughter today. It was a lovely, long conversation. I admitted that I hadn't written her a letter lately -- then she made a special request. She asked me to mail her one of her favorite things in the world: candy corn. I'm generally a good care package sender. She and her roomies get fun stuff from me for holidays and sometimes I just randomly send a box with her favorite tea, an urban outfitters catalog and new pair of socks or something. I almost always include some kind of candy. However, the last package I mailed to her down under cost me 25 bucks! so I sort of paused, contemplating the weight of candy corn. Of course I'll send her some, but maybe just one bag!

Care packages come in all sorts of shapes and sizes. My kitchen table is currently covered with gift bags and mailing boxes (yet unopened -- it's been a long day) and it isn't even my birthday yet. Each person who has gifted me took time and care to choose, wrap and even mail a special something just for me. I feel so undeserving of all of this attention! I am so well cared-for.

Care is a very broad concept. There are a bunch of noun definitions, but I want to ponder the verb definitions -- and they are complex! so I have omitted a few: care [kair] verb, used without object 1. to be concerned or solicitous; have thought or regard. 2. to make provision or look out. 3. to have an inclination, liking, fondness, or affection. And then verb, used with object 1. To feel concern about.

I think some of these can be combined to be more meaningful. To be concerned about something or someone is to care about something or someone. It's more of an emotion or feeling. I know that plenty of people have been concerned about me and expressed that care over the last few years, in particular. They let me know that they care through various means, but I get the message and I am comforted by their care. The second definition is more about how you show that care. Because so many wonderful people have made provisions of care for me, I believe they may have taken a liking to me -- or feel fondness or affection for me, and that is comforting (like a nice pair of socks).

Caregiving is a variation on this theme. care·giv·er [kair-giv-er] noun 1. a person who cares for someone who is sick or disabled. 2. an adult who cares for an infant or child. Most of us are caregivers -- or have been caregivers at some point -- or will be some day. I have been a caregiver on and off for about 29 years. When my mother died, I was 19 -- right on the cusp of teen and young adult. According to my handy-dandy Motherless Daughters book, that means I share all the effects of losing my mother from both categories. Great. One of the consequences is having to care for the remaining parent (in some capacity) and any younger siblings. Yep. I became the cook and the head-housekeeper care package overnight. Though my grandmother did live with us some of the time, a lot of the household stuff lay squarely in my lap. I had two younger sisters -- one just finishing high school and one still in elementary school. I had almost finished my second year of college and wasn't really equipped to take on this responsibility, but it was mine, nonetheless.

When I was 27 -- just 8 years later -- I had my first child and became a caregiver of my own choosing. Then I had a second baby not quite two years after that. Lots of caring going on! They certainly were objects of my thought and concern -- I made provisions for their keeping -- and I was quite fond of them, and still am. (They continue to be objects of my deepest affection, so the candy corn will be dispatched!) And I physically took care of them -- bathed, clothed, fed and taught. I loved them.

When David was first diagnosed, he needed different kinds of "care." First I had to call an ambulance to take him to the hospital. Then I had to make the decision of where to have them life-flight him for emergency surgery. Then I had to confer with the surgeon and give my consent for brain surgery. After that, I gave great regard to his continued treatment -- along side of him helping to make decisions for treatment options and doctors. I was very mindful of his emotional needs and, when he needed it the most, I knew when to hand him his guitar. (He didn't know if the surgery or tumor had left him with a deficit making it impossible to play, but we had to find out.) All the while, I had to find the balance between what he required in care, what he wanted in care and what care would be "too much." He was still a very independent, proud guy and having to be chaperoned around by anyone, including your wife, can be hard to swallow. I think we figured it out pretty well.

Another form of a care package is medical folk. It's important that the package in which your care is delivered is a good one. One of the nurses that discharged him after his first surgery wasn't such a good one. She crushed my spirit by basically telling me he was a dead man walking -- to let him do whatever made him happy and to get his affairs in order. Her negativity and insensitivity made it into a line in one of his survivor anthems, Live Forever.  His radiation oncologist, on the other hand, shared hope with us. We actually introduced him to David's neuro-oncologist and they established a professional relationship. We found that neuro-oncologist by searching a virtual [clinical] trial website and making a cold-call to a North Carolina number. When Henry actually returned our call himself -- at 10:00 on a Friday night -- and told David he was too young to die, we were delivered an important package of David's care. [If anyone is in need of this information, just leave a comment and I will be happy to help you with resources.]

David ultimately had about 11 pretty healthy and relatively uneventful years. He did undergo multiple surgeries, chemo therapies and nuclear medicine within the first year out of diagnosis, but, aside from peripheral vision loss, he led a full life. He travelled extensively and independently. He wrote and recorded and performed. Caregiving rather lessened to rides to and from airports, some help folding shirts for the suitcase and being the support staff -- in addition to everyday stuff like food and laundry and wifey attention. It was the last two years of his life that the role of caregiver took-on a whole new meaning.

When the recurrence happened, the tumor was in a different area than his first two. All along, we knew that a GBM was a tricky, sneaky, mean-spirited bastard, but after 12 years of remission, this was a bit of a surprise for everyone, including Henry. The chemos this time around were much harder on him -- they were newer and he was older. The side-effects were maddening and heartbreaking. Concomitant to the physical side-effects were mental changes -- cognitive and mood. When he experienced yet another recurrence in yet another area of his brain, he became very dependent physically, but he adamantly and, yes, courageously, defied it. Taking care of David became pretty challenging -- and there was nobody to take care of me.

One of the most comprehensive care packages (meeting every definition of "care" and "caregiver" above) that I have had the honor to experience is Hospice. As David lay in the hospital, unable to stand or walk -- and unable to understand these things, I was faced with a very important decision. Do I contract a medical equipment company to bring a hospital bed to my home, clearing out the furniture in the back room of the house and hire in-home nursing care? Would insurance pay for that? There was no way I could possibly lift him. If he were to try to stand and fall, I would have to call the ambulance to come and help me. He could be injured. His doctors told me he probably had between 2 and 6 weeks to live. The social worker offered to work with me finding a nursing home. A nursing home -- for my proud, young, amazing husband? He would be so humiliated. They wanted $11,000 up front, too. The social worker also offered to help me figure out how to go bankrupt so we could qualify for medicaid or something. The Palliative Care floor in the hospital said no. What?! Then my caregiving pastor suggested the Hospice House. It is a beautiful, historic home with only about 7 beds. I couldn't imagine that he could get a bed on such short notice. They had a full house and a waiting list. But he did. I had texted everyone in my phone to pray for this -- and almost immediately, they called offering David a room.

Maybe some other time I will write about these last few weeks, but for now, I will simply end by saying that this last decision assured that David was very well cared-for at the Hospice House. And they cared for me, too. I had many caregivers -- bringing food, praying, sending those cards and letters and gifts -- calling and visiting. I could give David that wifey care -- and give my kids that mother care -- because of these many special people. Still, nearly two years later, I have this table full of gifts and will have had about four or five birthday lunches and dinners before the week is out. I love my care packages very much and thank God daily for each and every one of them. I'll be standing at my island writing thank you notes again -- knowing their loving care through provisions of gifts, food and words -- their regard for me -- and their fondness and affection.

The least I can do is mail a bag -- or two -- of candy corn to my sweet daughter, no matter the cost. My son and his roomie will certainly receive a care package, as well.

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