One Step Forward, Two Steps Back

I decided to move my FB updates on Mom to my blog since they are getting longer and longer.

Mom can now talk again. Not perfect but I can understand her most of the time. She's scared. She started crying and said, "I have cancer."

Autumn and I said, "No you don't"

She argued, "Yes, I do!! I am dying."

I told her we're all dying but I would tell her if she had cancer. We had to get the nurse in there and I think we may have her convinced for now. She was great and explained everything to her about why she is there and what they are treating her for and she seemed to understand. I may have to tell her again and again. Her biggest fear my whole life has been that she'll get cancer. It was kind of a joke. My dad said once, "Billie's always been afraid she'd get cancer and I'm the one that got it." He passed away at 52 and she is 83 and still afraid of cancer. I told her I had cancer and I'm still here, but you don't even have it so quit worrying about it. Everytime she has an issue, she says, I bet it's cancer. She actually did have skin cancer but not bad.

Still, she does have a clue about what is happening to her. She has always been sharp as a tack. Only a year ago she did every crossword puzzle she could find. She told me later, "I don't want to die." I told her it was up to her and God, I don't have anything to do with it but she has a lot of people waiting for her and it'll be a wonderful. happy place and she has no reason to be afraid because she accepted Jesus as her Savior. I alos told her that until then, we are doing everything we can to keep her comfortable and well.

Very hard to see your mother so frightened and not really in her right mind. At least she can verbalize now and we know what she's feeling and can talk to her about her fears.

Most of the time she's smiling and happy. Last night she was breathing pretty heavy but today seemed much better. They give her Dilauded for comfort to help with the breathing, I don't think she's in any pain. She has moments of different personalities, they're all hers, just sort of separated into different groups. The scared Billie, the almost childlike Billie, the tired Billie, and knocked out Billie.

I asked if she wanted me to read some more of the book I've been reading to her. She smiled big and said, "Yes." She's enjoying the book, Heaven is For Real. It's a really good book.

So I read a chapter and in the middle of the second one she started to say something. I said you want me to stop now. She said, "yes." I could tell she was tired. We left to go get something to eat and let her rest. We left our things behind so she'd know we'd be right back. Paige was with us (2 year old grand-daughter) and was very upset we left it. She is going to be very controlling someday. What am I saying, she already is.

We went to the gift shop and picked out a stuffed puppy for Mom. Well, Paige picked it out, a pink poodle with big eyes. She insisted on two. "One for Nanny and One for Me." Who could say no? Then she didn't want to leave Nanny's with her and pitched a fit when we left. Very strong willed and prissy at that. The lady in the cafe thought she was in pageants by the way she walked and put her hand on her hip. Nope, it's all natural.

When I got home, a different doctor than yesterday called and he was sooo nice. He's leaving information in the room for me about the artificial nourishment (feeding tube), etc. They think the dementia disease is so progressive that it would not be ethical to insert a feeding tube. Our concern is that she will starve to death and be hungry. They said her brain will not tell her she's hungry but we can just let her eat what she can for pleasure. I'm prone to agree. She had chocolate pudding today and had some trouble swallowing but she enjoyed it and smiled. She had a little ice cream too and swallowed. As long as she can have her sweets she'll be happy. She had already volunteerily quit eating and pretty much quit meat. Nothing was tasting good or she just didn't feel like eating.

I hope I am not bringing anyone down with my updates but this is just what is going on and if it is hard to read, I'm really sorry. I know her friends and family are so concerned and waiting on any word and the best way to let you all know is to post it publicly for all to see. Easier than calling one by one and phone chains can get information all mixed. I'm not even sure I remember everything the doctor tells me and miss important facts from person to person. I think my head starts spinning at "Hello, I'm Dr. so and so."

So this is my journal of how Mom is doing and her ups and downs. I'm sure later I'll read it and say, Wow, I totally forgot about that. I'll be glad I wrote it all down. I re-read my caringbridge one day and I found it very interesting and had totally forgot a few things. When you are battling cancer or any disease, you seem to make it through by the grace of God just when you need it. Of course, same goes when you're caring for a family member. I am amazingly calm but I do have some extra help with that besides my family, who have been great.

People say if there's anything I can do let me know. I hate to ask anyone for anything, always have which is why I get stressed out. I am hoping if I have a takaway from this I will be more aggressive and doing and not just offering since I know what it's like now more than before. One of the best ways to help is to sit with her. I need time away but I don't want her to be alone. I want to be there 24/7 but I can't. Yet, I now she's better when I'm there so I feel rather guilty when I'm not. I try to go everyday or night. I did it in the nursing home and now in the hospital but it's harder since Baylor is farther away and I still work 40 hours a week.

Mom needs to know people care about her. She has always needed that since I can remember. Her self esteem has never been too high and she needs constant reassurance that she is loved. I don't know why, maybe from something in her childhood but she loves visits even if she cries, which she has always been over emotional. She passed that on to us so it's a genetic thing.

Our house is torn apart with a plumbing leak and weird flies are everywhere. Mike is going to try to fix it himself and we have to repair the floor and move all the furniture. Our finances are pathetic. I know God will provide but with all that is going on, it is so stressful I haven't even had time to pay the regular bills. It's so depressing and I'm sure I'm racking up late charges.

I'm so tired I'm running on adrenaline. My blood sugar as been a little high this week, probably from not eating regular meals or just not being hungry when I do have food in front of me.

We have a  busy day tomorrow with Reace being head cheerleader, then taking Kaylyn to the zoo for her internship and leaving Autumn and the other girls while Mike and I attend a photography workshop, then back to the zoo and Harry Hines to a shop for the cheerleaders. It's sort of a happy day outing to put set aside some of the pain and just have some fun. I'm not sure we'll get to do it all but we'll see if the stars align and give us a much needed break. Then we'll head back to the hospital to see Mom.

If you are still reading after this ridiculously long post, I Love you All and Thanks for All the Prayers. My friends and family Rock.
Karen