Friday, May 16, 2008
Here is an older photo of Charles from November, and a photo of myself and my grandson in April on my birthday. We went to San Antonio last Friday and got home late Monday night. Charles seemed better than the weekend before. We had a meeting on Monday with several members of the hospice that is taking care of Charles, and some members from the staff of Charles' home.
At the meeting we had the director, an RN, a social worker, and the Chaplin from Bethany Hospice. Also there was the Administrator, home nurse, Q, which is over the house mom, who was also there.
We had been alerted that the home was thinking of sending Charles to a nursing home, and we weren't having any of that! However, it turns out that they were not going to send him to a nursing home. The thing is that if Charles gets into a crisis that can be managed better at the mini-hospital of the hospice, they will take him there.
Charles is having increasing pain in his left leg, and so they are giving him more morphine for his break through pain, which makes him more sleepy.
The RN from the hospice and the RN from the home agree that Charles will probably suffer more broken bones, where the cancer lives in the marrow of the bones and causes large tumors. We are pretty sure he has one on his leg. They will probably put it in a cast, but it won't heal. Then he will be bed bound. They brought his hospital bed, which looks just like a twin bed. It has electric controls, and side bars that are down now. He just loves it. He said the handyman bought it for him because he is the one who delivered it! The hospice director said that everyone always wants to know how much longer the patient has. He said they count time differently than we do in the world. He said they say months to a year, weeks to months, days to weeks, and hours to days, and minutes to hours. They say Charles has weeks to months, so we are not sure how long that will be. He is loosing more weight, eating less, less active, and like I said, sleeping more. He has been sort of going up and down, but always in a decline, and as he gets worse, he will go straight down.
My head is reeling, and my nerves are a mess again. I have been to the doctor to get some injections in my left shoulder, neck and head to block the pain, and I am taking muscle relaxers to help me get better. I also had injections in my right hip (my bad one) and my right knee. I am feeling some better. We would be going again tomorrow for the day, but Sis and her husband are going, and I will stay home and rest.
Charles is still happy to see us, and he felt strong enough to go to Denny's one morning for breakfast, and we had a great time together. He finished a new black velvet art project that was almost ruined. Someone spilt their drink on it, and some of the colors blended together. I think it looks great, and maybe that's the trick to blending those watercolor markers, just dump water on it! We had a great time with all of the clients there since we were all the house most of the time. Laughting, and playing and watching movies. It is the saying goodbye that is so difficult. I went over to him in his recliner to say goodbye on Monday, after the meeting, and I just hugged Charles so closely, and I could feel all of his bony back, and then I couldn't let him go. Only when I knew that I was going to cry did I let him go and turned away so he couldn't hear me or see my face. I went out of the door and just cried and cried for my brother.
Please continue to keep Charles on your prayer list. Thank you so much for all of the beautiful new cards that I saw this time. Each one a treasure to Charles and to me.
Posted by Mary Lynn at 10:00 AM
Friday, May 9, 2008
Hello everyone. Here are some photos that were taken last Saturday. I could see a big difference in Charles since we were there before. He is so much weaker, and having more break through pain. Sis and I are leaving in the morning to go back to SA, and we may come home on Monday. We know that Charles doesn't have a lot of time left, so we want to be with him as much as possible. I have been an emotional wreck all week, and I know it is only going to get worse. His hospice doctor said that he didn't know how Charles was still alive and he was doing OK, but now it has hit all at once, and we don't think he will make it to June. If you wanted to send him a card or something, now would be a good time. He is on more pain meds, and an anti-inflammatory medication for cancer patients to reduce swelling, and it has made him so sick that I think they are going to discontinue it.
In the first photo are my sister, Jeannie, and Charles and I, and we are at Denny's for breakfast (of course). Second photo is just me and my darling brother Charles. All our lives we have called him Butch, and a few years back, out of the blue, he asked us to call him Charles, which was my dad's name.
Photo three, look at that beautiful smile. He didn't know I was taking his picture. Last photo, he is back home in his recliner.
I wish you could all be here to meet Charles. I promise you would go away, just knowing that there is someone out here as special as Charles is. I want everyone here to know that Charles is so happy to see the postman and to get cards, letters, photos, drawing from some children etc. from all of you. He received several letters from 5th graders who wrote to him in English class. He liked those too. You have kept the smile on his face. Someone sent him a necklace that has a boot, hat, and saddle charms on it, and he hasn't taken it off since he got it. He even wears it to bed. Speaking of which, hospice is delivering a hospital bed tomorrow, and he is getting his TV tomorrow and a combo DVD/VCR player, all from his home. When he is so medicated or feels really bad, he has started to go and get in his bed. They want to be able to put up the bars to keep him from falling out of bed as they continue to increase his pain meds. He is still very much Charles, and what a trooper he is! Still never complains about anything except of course the pain.
We had told him that we would take him to the western store after breakfast if he wanted to go, and he said "Yes"! On the way though, he wanted to get his flat top haircut so we did that. We took his hat and had is cleaned and a new hat band put on it. Then we looked at the shirts and pants. Well, Charles shops like a girl, because he has always gone with me and sis, so he had to pick up, consider, look some more, and finally decide what he wanted. He picked out one really expensive shirt that was a red plaid, and I said "Charles, this one isn't on sale, so you decide do you want to keep this one, or get 2 off the sales rack". Well, of course, he put the red one back so he could get 2! In all he chose a pair of white jeans!!!! He loves them so much, and 3 western shirts a blue check, a blue and purple plaid with gold threads running through it, and the red shirt he is wearing in his recliner, a purple western T-shirt with a beautiful wild horses image running across the front, the new hat band, a new key chain that is a miniature spur that spins!, a new buckle with a star on it (he has a brand new buckle and belt that he has from Christmas that he is saving). Charles has always worn rather quiet clothing, but WOW has his taste changed! He had a wonderful time at the store, and when he was so worn out he couldn't go another isle, we took him home.
He took some pain meds and got in his chair. We all set together, and looked at his cards, and we read them to him, and he would just listen, and look at the images, and he kept saying "from your friend", or he would tell Jeannie, "from work". He meant from her job, where she is well loved. (She is the payroll clerk for a school bus company). He knows I paint, and make art and that I "get online" and talk to people.
I am not sure that Charles will ever wear the new clothes that he picked out, but sis and I have decided that those are his "special clothes" that he will wear when the time comes, and they were bought with love, kindness, and the money that all of you have sent. I can not express to you all, how wonderful I think you are for "being there" for my brother. I just thank you from the bottom of my heart.
I will update my blog again when I get back in town, and I am sure I will have more photos too. I love to do my art projects, but it has taken a back burner lately, and I was looking for a new place to live, but all of that can be done later, but I can't make up the time that I would loose with Charles, if I am working on something else. Art is very important to me, and it has helped me to work through some past bad experiences, and I know I will return to it when I can.
Well, it is late here, (3:53 AM), and I know I have to get up early so I will say goodbye for now. God bless you and your families, and I will write again soon.
Posted by Mary Lynn at 2:37 AM