Saturday, September 6, 2014

I Need Thee Every Hour - words so meaningful to me

Sometimes you see a train in the distance, and you know it's coming your way because you see the light getting closer. The speed of the train is unknown until it gets much nearer. I've known for sometime that changes were coming, but I didn't know how quickly they might happen. The timeline is fuzzy in my mind, but I can assure you that Billy's decline in the last six months has happened in double time, and I have shed as many tears in those months as I did when we first placed him in the nursing home. When I attended his last Care Meeting in July, the nurse who attends those meetings said that in her 20+ years working in nursing homes, she does not recall a resident declining so much in two and a half years. When he first moved into the nursing home, the administrator said she felt he needed a tag that read:  I am a resident not an employee. When anyone entered the memory unit, Billy would extend his hand and introduce himself as BJ Knowles. They thought he worked there.

At the present time, Billy does not stand alone or walk.  The staff uses a mechanical lift to get him out of bed. He cannot sit up straight on his own.  He fell out of his wheelchair several times, and they put him in a geriatric chair.  He leans badly, and he leaned so badly in the geri chair, he had to be straightened often and propped with pillows. 
He now has a fancy new chair, and it seems perfect for keeping him upright.  He seems more interactive and smiles more, too. I'm convinced that he feels much better because he can sit upright in a chair that fits him. He was able to get a new chair because he is now on hospice care, and they could foot the bill.  Medicaid nor Aetna would purchase the chair, and the nursing home was looking into buying one, but the wheels turn slowly on large purchases. We are most grateful for the chair.  (The photos below were taken moments apart.  He would not open his eyes for most of the idea why.)

Hospice is one of those trains I saw coming, but I thought it was further away. Sadly, the time has come. The physician's assistant who cares for Billy and sees him every Monday, feels the time has come for end of life care.  Only God knows the time that He will welcome Billy home, and until that time hospice will do all they can to make him comfortable.  The chair is certainly a big step toward his comfort. 

We are blessed that Billy knows us, and he communicates with his smile. He talks some, but his words are usually unintelligible. Once in a while, he says something that makes complete sense, and I love that. His smile is beautiful, and everyone around him loves to see it. 

Alzheimer's is cruel, but you already knew that. 

Another train has been barreling through with my mom's cancer. Since June, we've had to call 911 five of those in Galveston. All but one of those trips has led to Mom being admitted into the hospital, and her issues have all been related to complications from cancer and chemo. At her last chemo treatment (nine days ago), the nurse accessing her port missed it, and something was punctured.  Seven hours later, she was still bleeding from that wound and a trip the ER got it under control - finally. That represents our LAST visit to the North Hills ER because of the unprofessional behavior of the medical staff. Fortunately she was not admitted. She made it less than a week before another serious bleeding incident. She woke me on Labor Day morning very ill and had been experiencing a GI bleed for several hours. The paramedics know us well, and as they were loading her up, one asked what had happened with the bleed the week before. We asked them to take her to the new Texas Health hospital at Alliance, and after they evaluated her, they sent her to HEB Harris because most of her doctors practice there. After a few hours there, she was quickly moved to ICU because of uncontrolled bleeding. After four units of blood, two units of platelets, and 5 days in the the oncology unit, Mom was discharged yesterday.  She is very happy to be home. She has to be stronger to withstand the preparation for a colonoscopy, and she is not even close at this point. There is an urgency to find the source of the bleeding, so we are praying for her blood counts to stabilize and for her to gain strength. 

At this moment, Dad is doing about the same. He has days when he is more alert than others. I went to see him at lunch on Tuesday, and he was at a dining room table pushing Tonka trucks around. That made me sad. I usually end of laughing at some point when I visit him, though.  Patients with dementia do strange things, and you can either laugh about those things, or you can cry. Crying gives me a bad headache, so I try to choose laughter. 

Dad and Billy are on hospice. Mom is not on hospice, but she's feeling like her days of chemo treatment are over. Ending up in the hospital after each treatment is not her idea of a high quality of life.  

The prayers of our friends and family are felt, and we are so grateful for all of them.