Wednesday, October 10, 2012

Goodbye Mom, For Now

Mom crossed over into Glory Land early this morning. The phone rang and I missed the call by the time I pulled off the CPAP machine and found my phone. I rang it back as Mike's cell began to ring. On my phone the nurse at the hospital asked me to come to the hospital regarding my mother.

I asked if she had passed and she said, "I'm sorry, yes ma'am she did. Do you want to see her?"

I said, "Yeah, we'll be right there." Thinking this must be normal although nothing seemed normal right then. I didn't cry, I felt relief. She was on her deathbed and I didn't want her to suffer.

Mike's call was the hospice nurse Andrea. She gave me the details as they had been given to her and my head was kind of spinning while trying to get dressed and get on my way. Then the social worker called as we were leaving the house or as we got to the hospital. Not really sure now but I told her we knew and thanks for the call.

When we arrived, they ushered us into room 218 where Mom looked like she did when I left her, except her chest was no longer going up and down. I watched her breathing all week to make sure she was still with us. Occasionally she would moan, choke a little, but mostly just sleep. The pink had left her cheeks and her skin was getting cold but still touchable. I stroked her cheek and told her I loved her as tears rolled down mine.

It is a relief to know Mom is now praising Jesus in Heaven. I know she was met at the gate by my Granny and Grand-dad, Dad, Charlie, her best friend after Dad and Granny went to Heaven, and so many others too numerous to name.

No one wants to lose a loved one but no one wants to see that loved one suffer. It's is a hard thing to do, but it was good for me to spend the last few weeks spending extra time with Mom. She lived with us but we are always so busy with life that we don't often slow down and spend time just talking. I spent every lunch hour at the nursing home or hospital and every night someone went by to visit and keep her in the present and out of the scary other worlds her mind took her. She had some good days and some bad nights. Mom had always had a sharp mind. She was a crack crossword puzzle solver so it was hard for her to lose her memories. And she knew it was happening. She had moments of normal followed by fear and confusion then back to normal but she remembered much of the confusion as real. Then she'd realize she was losing it. She told me two weeks ago when she got her ability to talk back briefly, "I didn't want to go this way." Heartbreaking.

If I have one takeaway from this experience to share with others, it is this; spend time with your loved ones. Go visit your parents, visit with your children, call your friends, stop and smell the roses, then pick some and take them to someone who needs a little cheer in their life. Life is too short to be mad, sad, rushing, fearful or confused. Mom ended up very confused with dementia but you could see her personality even in her confusion. Be careful how you live because all of your traits, good or bad, are magnified when your mind starts to fade a little. I want to be happy, do good, make a difference, be at peace, so when someday should I get dementia, forgetfulness, or confusion, let my true self show through with beauty, grace, and no fear. I want my legacy to be, Karen gave of herself and her heart was full of love. I want to be a giver like my Mom. No one could go hungry around her, she'd give off her own plate. Literally, "Here, eat this. I won't eat it." Even if she just took her first bite.

I know Mom is at perfect peace now and full of joy. That is how I see her, with her beautiful smile, young and dancing with my dad. I told her when she gets to Heaven, Dad and Charlie will be fighting over her. She laughed at that. She was blessed to have found love twice and nursed them both in their sicknesses. Dad passed away at 52 with cancer and Charlie suffered from MS their whole courtship. Mom was a caregiver so it was hard for her to accept our care giving to her. Always stubborn and self sufficient, she hated being dependent on anyone. Unless, it suited her. I sometimes think she saw herself as queen and us her subjects. Ha! Yes, at times we butted heads but we loved her and she loved us with all her heart. She would do anything for her kids or grand kids if it was in her power and sometimes even if it wasn't.

Mom loved her Bingo. She had Bingo friends that she missed dearly since she hadn't been able to go in a year. She had church friends from forever that she still talked to often. I grew up sitting in the laps of her, dad, and all of their friends while they slammed dominoes on the table boasting their victories. Mom was a ferocious player. She liked to win and she was good. My brother and I grew up playing with Mom and Dad in every kind of game such as 42, pinnochle, hearts, spades, even double nines, tri-ominoes and anything else we could find to play. As Randy got older we had to hog tie him to play with us but Mike came along and we became partners with Mom and Dad in the weekly games. We were just like the old folks playing dominoes. As a kid we had fun vacations and always had our games with us to keep us busy in case of rain. Mike and I continued that tradition even to this day we take extra things to do or play. That may be why I love rain and don't mind rainy vacations.

Autumn just brought me a Grandmother's Memories book that we gave Mom and we didn't know she had filled it out. Oh my, now this brought tears to my eyes reading her memories. Pastor Russell asked me tonight if she had a favorite bible verse and I didn't remember one. Here it is in the book.

2 Timothy 1:12

King James Version (KJV)

12 b for I know whom I have believed, and am persuaded that he is able to keep that which I have committed unto him against that day.

I had some tears reading some of her answers.

I know there is a God because
     I feel His presence.
I believe when I go to Heaven
     I will meet my loved ones face to face.
An important lesson I hope all my children and grandchildren learn
    To always be honest, serve the Lord, and be kind to one another.
Someone who helps me be a better Christian today
    Your Grandmommy (me)
    PePaw Charlie (her companion for 25 years)
Something I have learned about getting along with others
     Do not criticize, be a good listener, which sometimes I'm not because I guess I want to talk.  
     (anyone who knows my Mom knows this is TRUE.)
My best friend now
     Actually I have always said your Grandmommy is not only my daughter, but also my 
     best friend, which I think she is.

Nuggets of silver and gold left behind for us to find.

Thank you Mom. I will always love and miss you.

So Goodbye.  For now. I'll meet you on the other side.


Tuesday, October 9, 2012

Waiting for God

What a difference a few days make. Mom seemed to be getting better but I think it was a nice gift. Mom was able to talk for a day and a little the next day. It was blessing and we were able to try to calm her fears. The dementia or brain damage is causing her body to fail.

The doctors advised against a feeding tube to prolong her life but really we didn't want to prolong her suffering. They assured us the dementia would prevent her from being hungry. She is in the hospital but they are discharging her Thursday and we are taking her home to her house and she will be under 24 hour hospice care. My brother will come into town tomorrow night and will stay with her until she crosses over into the Promised Land.

I had a meltdown at the hospital today and ended up not going back to work. They were simply ignoring her and she seemed to be choking so I went and asked if they ever checked on her. They simply didn't seem to care one way or the other. I asked the tech if he ever observed her to see if she was choking or her breathing and he said, "I don't have time." In a very how dare you expect me to waste my time taking care of a patient that is dying kind of voice. At least that's how I felt. I asked him if his intention was to just let her suffer and die? I know she's dying but this is supposed to be comfort care, not I get to be comfortable while you suffer care. I told them they may as well put a pillow over her face since they were just letting her choke. So ridiculous. Be very adamant with your loved ones. We have to be their advocates when they can't speak for themselves.

Needless to say, I went balistic, told him the get the respiratory therapist to suction her mouth and he came back and said she's coming but she doesn't think she can do anything since she's on hospice. So when she came, I went balistic on her and she said she can't do it if the doctor doesn't order it. I said, "So, you're telling me that if a patient in this hospital is choking to death, you're just going to let them die because the doctor didn't order it?" She didn't want to put a tube down her throat in case she started bleeding. I said just suction her mouth and get the gunk out of it so it doesn't roll down her throat and choke her to death. I used a choice word or two to get my point across. Not proud of it but she got the stuff and set it up. Don't mess with me when I'm taking care of my Mama or my kids and I'm sure if my hubby is in that position, I might stomp on someone's head. Just sayin'. I may go redneck on them.

I already had the hospice nurse on the phone and she was appalled at their behavior and came right out as she was about to come anyway and the social worker came out to tell me the hospital caled that they were going to discharge her today. By now, I'm about to lose it and already told Nurse Andrea that my brother was coming Thursday and we could take her home if necessary. She deemed her 24 hour care and they began calling the idiot lady who said they were kicking her out. My poor Mom had already been kicked out of the rehab (they wouldn't let us bring her back Sunday), kicked out of Baylor so to speak but that's whole other story, and now kicked out of Dallas Regional (I do NOT recommend this hospital after our treatment).  On the other hand, I should have stayed at Baylor since I had an option at the time but I let someone else push me to make a different decision that I now regret.

My pastors came out and I think they may have heard Pastor Russell ask if I had a good lawyer. They were very comforting and offered any help if I need it. Prayed for Mom before they left.

The nurse spoke to the tech who never apologized to me even though she said he felt bad about it but it was very hectic at that time. Funny, when I went and got him he was sitting down behind the desk. The doctor said she's had trouble with him before and wanted me to lodge a complaint but I think Nurse Andrea did it for me. I don't want to complain on someone that is taking care of my Mom. At least not until after we've left. He did make a 180 and was very much kinder after that.

So the doctor came in (our nursing home doctor is the hospital doctor) and said the hospital wanted to discharge her because there was some kind of inappropriate admission and she said we don't have to worry about it, we won't get a bill, the hospice people will have to take care of it. So Mom's staying until Thursday and then going home to her house. I really hope she makes it because all she really has ever wanted to do is to go home. And if she doesn't make it that long, then she will truly be going Home to her Heavenly Father. So it's all good.

Praying she makes it and we are all around her to say goodbye at that time when God takes her to her Forever Home.

Mama, I love you and I'm going to miss you like everything but you'll be so happy in Heaven with Dad and Charlie, Grannie and Grand-dad and everyone else that's waiting at the Pearly Gates right now because they know you're coming soon. <3

Friday, October 5, 2012

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.