Rarely have I ever felt such disgust and frustration with the medical community as I do at this moment, because when you live with someone and see them suffering all the time, it's maddening.
Mother is having a terrible time with lymphedema. It has affected both her lower legs for several years now, but it's gotten much worse lately. I took her to a geriatric doctor over at Emory a couple of weeks ago, which is the best care available in Atlanta, but he has not really been able to help her.
Mother reminded me yesterday that her father had this, and her older brother, my uncle Bobby.
Mother's left calf is swollen to twice its normal size, and the skin is red and bumpy, and there is a leaking sore on it. Not to be gross, but just trying to be honest here. Up until last week, there was no open sore place.I just put cream on her legs every night and tried to keep the skin supple.
I have spent several days wrapping her legs, unwrapping them, putting various creams on them. We've tried Neosporin, silver gel [recommended by the Emory Wound Clinic] and raw honey. Guess what helps most? The raw organic honey. The silver gel is the worst. It made her leg itch horribly.
It poured rain all day yesterday but I had to run around a lot. I went to CVS for her prescriptions. When Mike came home we had to go to the mall and get his glasses fixed, then we went to Walgreens for the silver gel. I went to Anna's Linens and got new bathmats for Mother's bathroom, and new bedsheets. I'm having to change the sheets about every day.
The standard treatment for this is the silver gel and wearing compression hose on the lower legs. Well, Mother can't stand even a loosely wrapped Ace bandage, so compression hose are a waste of time.
When she was first diagnosed a few years ago, I took her to a specialist who prescribed an Unna boot - just medicated bandages wrapping the legs. The legs would swell out over the boot and start hurting. We finally stopped doing that after a couple of weeks. It didn't help.
I talked to a nurse yesterday who repeated the doctor's instructions, the standard line about how to treat the edema.
"Make sure her leg is elevated above her heart," she said. I thought about that. "You realize, for that to happen, she will have to be in the bed with her leg propped up, right?" I asked.
"What kind of quality of life is THAT?!"
I tried to be patient but it was difficult. Who wants to lie in bed all day with their leg propped up?! Mother likes to sit at her computer, read, talk on the phone, watch TV, and cook. Lying in bed all day means she can only watch TV. She doesn't have the sound on most of the time. So nope, not a solution there.
What irritates me most is that there is really no cure for this and the doctors, even ones who specialize in older people, DO NOT KNOW what to do about this. They told my grandfather 40 years ago he would have to stop drinking and smoking! He was a Baptist Sunday School teacher who NEVER drank nor smoked.Mother quit smoking years ago and she rarely ever drinks anything, except maybe one beer or glass of wine eveyr few months.
More recently with my uncle, they wrapped his legs in gauze and then when the bandages came off it hurt him terribly. He finally just said, no more home health nurses. I don't blame him.
Walking some more may help. Some light massage may help. If she could come off some of her medications for blood pressure it might help but then there's a big risk of stroke.
So I am sort of throwing this out to the virtual world in hopes of snaring some help. If there is anyone out there with lower leg edema, and you know a good treatment, let me know. We will try anything at this point. Herbs, incense, acupuncture, a witch doctor - whatever.
Nobody wants to sit all day with their leg draining into a towel, afraid to get up and walk for fear of falling. Yet that is Mother's reality, at the moment.
If nothing else, please say a prayer that maybe by some miracle this can be cured or at least managed better. Edema is the enemy.
