End of February Update

Hoyer Lift

Ed is still hanging in there, but NOT hanging in there .  (You will understand after reading this entire entry).

He has been pretty much the same since his last doctor visit in January. His health remains about the same. 

• He remains mostly immobile. He still has use of the left side of his body. But since the right side does not work for the most part, the left side can only do so much. He shaves with an electric razor, eats, uses the controls for his bed, etc., with his left hand.
• He must remain in bed until someone takes him out and puts him in his wheelchair or recliner.
• His weight appears to remain the same. He eats pretty much anything.
• He doesn't like Gatorade as much as he has in the past, he drinks more Ensure.
• Except for a few words, he remains without speech ability.
• He still loves to watch Westerns on TV.

A few days ago, a friend of the family had a Hoyer Lift delivered. The first day it was delivered and demonstrated, my mother was very pleased with it. I knew that would be short lived. After a couple of days, Mama decided it was more trouble than it is worth. It doesn't help that my brother won't use it. Mama was able to operate it, but said it is too big and bulky and hard to move around to make it a useful item. If you haven't figured it out yet on your own, we have some really stubborn people in our family.

Members of the family and friends still continue to help when and where they can by bringing food, care items, and visiting to try to lift Ed's spirits, and Mamas.

Ed's former oncologist, Dr. Splichal, must have instructed his staff that as a former patient, Edward can no longer receive any type services, for I have placed three calls asking for advise or assistance of some sort, and my calls were not returned. I can understand not receiving any type of service or product, but advise or guidance I would think would be provided at least until a new doctor could be secured.  We must find a general practitioner or family medicine type doctor to treat Ed for things such as high blood pressure, cholesterol, colds, etc. My sister-in-law finally got someone at the oncologists' office to speak to her. She explained that yes, Dr. Splichal has released Ed as a patient, and he is not receiving treatment for his GBM brain tumor anymore, but he is still alive and needs his blood pressure medicine, would they please give him one more refill until a new doctor can be found. 

I was extremely pleased with the care and treatment Edward and myself received while he was a patient of North Georgia Cancer Center in Athens, Georgia. The nurses, technicians, office personel, and doctor were very caring and helpful. We were always greeted warmly, and Ed was treated with respect, compassion and given good care. We were given advise, medical treatment, and patient assistance as needed, and almost always with a smile. But when Dr. S said he is released as his patient, he wasn't kidding.

I myself, would opt for Hospice care now, if it were my decision to make. But Mama (and probably Ed also), are not ready for that. They still do not want strangers in the house. Ed may have a brain tumor, but he is still aware and I think does not want a strange person undressing him, bathing him, or cleaning him after using the toilet.

Ed still does not qualify for Medicare or Medicade or any home health care, except Hospice. He does get Low Income Assistance through the hospital in Athens. This covers emergency room visits, hospital stays and tests. But not doctor visits for colds and aches and stuff like that. He also receives help with his two most expensive (very expensive) medications, Lyrica and Dilantin, which he takes to control his seizures.

Yes, he still has seizures. They come approximately every two weeks. Sometimes just small little ones, but sometimes bigger, more severe ones. But thankfully, he still does not lose consciousness nor do they last more than a few minutes. 

The Hoyer lift is on the front porch, 'out of the way'. Mama says she can move Ed better without it. Therefore, he is NOT still 'hanging in there'.

All we can do is take one day at a time.