So I'm back in Texas after some time visiting my folks in NY. I'm very thankful I traveled the day before yesterday instead of yesterday, when all the hubbub took place at the airports. Pshew. That was another bullet dodged.
First, I wanted to give a shout out to the anonymous woman who shared her experiences in "The Little Room." I feel for you, sister, I really do. My dad said he would take the LONG way around from the elevator to avoid even PASSING the Little Room. Apparently, the doctors would need to throw a bag over his head and kick him in the kidneys, repeatedly, to get him into that room. My thoughts and prayers go out to everyone who spent time there.
So, in any event, several events indicated to me that I should spend today chatting about caregiving. A caregiver is the person who bears the brunt of life for the person who is ill, who takes on the role of facilitator. This is the person who carried the groceries, who does the laundry, who refills medications, who deals with the insurance companies, and screams for more painkillers. Most of the time, it's your spouse, partner or parents. I was surrounded by caregivers during my transplant, starting with first and foremost, my husband Teacher Man who not only was my caregiver but also the parent to our daughter, 18 months old (I was hospitalized for 3 months. And she was
brand new). So the events that prompted this post are these:
1. My mom was befuddled by my suggestion she keep towels upstairs, for my father's easy access to them. My dad has bone metastases in his pelvic bones, and this makes walking painful. A flight of stairs, down and back, soaking wet? Please. When I suggested perhaps keeping some towels upstairs, as well as some rolls of toilet papers so my dad wouldn't be stranded without either, you'd have thought I suggested pouring maple syrup on a T-bone steak. "What? The linen closet is
downstairs, Helen...." Sometimes you have to change our routines to make it easier for the patient. Or diet. Or who does what job around the house. It must happen. It stinks, I know, but get used to change. It's a'comin.
2. My flight back from Chicago to Austin introduced me to a lovely older woman whose husband had unfortunately died from cancer. He never went to the hospital though, and died at home at age 60. I expressed surprise and gratitude for such a decision and we talked a little about hospice care. She said, "they saved my life." Emotional support is very important for caregivers. Oftentimes, the sick person can't handle his own emotional needs. In my case, I dealt with anger issues ("Darnit, why won't my body
cooperate?"). Unfortunately, but predictably, I lashed out at people who helped me. Pain does that. Look around for free support groups for caregivers. Lean on your friends. Call on them to share the burden. My experience has been that friends yearn to contribute. Have them cook or babysit or pick you up a gallon of milk. It's okay. Ask and you'll receive.
No one will judge you for it. Your friends will just be grateful to ease some of the burden. Which leads me to:
4. I received a very wonderful message from an old friend I haven't talked to in a long time, offering to talk to me about her experiences caring for her father who also has cancer. (Thanks LC!) That encapsulated caregiving to me, reaching out to others with what you know to others who don't know. This way we expand our knowledge and don't feel so alone. Others have been there before. There are tips you can use to make it easier for you. And if you can get someone to talk about dealing with insurance companies, BONUS!
