What Now?

Dear Mom,

I wish I had blogged two Wednesdays ago and/or two Thursdays ago.  I wish I could have been able to go back and read what I observed those two days.  Sadly, I didn't do that, but those were definitely interesting days.  Because now things have changed!  Tuesday night after your friends left I started giving you morphine to keep you from being so restless.  You pretty much just slept Tuesday night.  Then Wednesday you never really woke up, much.  I got you to open your eyes a little bit when I went to change you, but you weren't in too much pain because I had been giving you the morphine to help with the pain.  You weren't really responding to any of us, myself, your brother or your sister.  The time I saw you open your eyes was when the massage therapist came in, she touched your face and you opened your eyes a little, but when she asked if it was OK for her to give you a massage you nodded your head yes.  I left her in there to give you the massage.  When she came out she told me that after she was done she asked you if you knew everything was going to be OK, and she said you again nodded your head yes.  That was very touching to me, and made me emotional, but I was very glad she told me.  You never responded after that.  Because you were sleeping so much, I couldn't feed you or give you anything to drink.  I just kept swabbing your mouth.  I would go in the room and talk to you, hold your hand, sing to you, and pray with you.  I think I hoped you would wake up, but you never did, and Wednesday night I didn't sleep well because I didn't want you to die in the middle of the night and we wouldn't know until morning.  I got up a few times that night to check on you, but you were OK, still breathing and sleeping.  I got up in the morning and was so glad to see your chest still rising and falling, even though you weren't waking up so I could talk to you and interact with you.  I brought Bella out as normal, then came back in to change you.  There still wasn't much of a reaction from you when I changed you, because of the morphine you didn't seem to have as much pain when I changed you.  Sometime that morning the phone rang, when I looked at the caller ID I was so shocked!!  It was my cousin, your niece, Andrea!  We haven't heard from her in years.  She has had some struggles and hasn't kept up with us because of some of them.  So I just couldn't believe that she was calling!  She had no idea that you weren't doing well because as I said she hadn't kept up with us for a while.  When I told her you weren't great, she asked if I would just put the phone up to your ear.  I did, and when she started talking to you, your eyes fluttered a bit, and I knew you understood this was a special phone call.  Your sister and I just kept an eye on you throughout the day.  The hospice nurse came over and checked your vitals.  Your temperature was 97 which wasn't bad.  Your oxygen level was 98% which was good, your pulse had been up, I had been checking it because the nurse said it should be about 18-20 normally, and the other day yours was 24.  She said if it got over 28 then that would be a problem.  That morning when she checked your breathing she said it was at 36.  So that wasn't good, but there wasn't much we could do about that.  Other than that I was encouraged that your vitals were OK.  Then she checked your blood pressure, it was 90/50.  I asked her if that was bad.  She said it wasn't good.  Then she took auntie and me out into the hallway so you wouldn't hear her, and told us that with your blood pressure that low, it was a sign of your body shutting down.  She said it could be hours or it could be days, just can't tell.  That of course made me so sad, but I just wanted to spend time with you, hoping that maybe you would start to show some improvement.  The aide came to wash you a little, then the homemaker/companion came and sat with you.  Auntie and I kept going  back and forth into your room to spend some time with you.  I would go in and sing to you, talk to you, and pray with you.  Then a friend of mine told me to read Bible verses to you.  So, I started doing that as well.  The Lord allowed me to find Psalm 138, what a wonderful chapter.  I would go back into the kitchen to watch TV or do some things on my phone and your sister would go sit with you.  Since again you were only sleeping, all we could do was swab your mouth.  I would go back in to spend more time with you, singing, praying, talking, and then take care of Bella, and hang out in the kitchen.  You were breathing heavier, it was hard to watch, but I knew you weren't in pain, and that made me happy.  That night auntie asked me what I wanted to do about sleeping, but I didn't get what she meant.  She asked if I would want to do shifts to stay up with her round the clock.  I never thought of that so I was glad she did.  I told her I would stay up because I am a night owl anyway, plus I was staying up to watch the Olympics until at least 12 each night.  So, she was glad to be able to go get some rest.  I watched the Olympics, swabbed your mouth, prayed, sang, talked, and read to you.

 About 1 a.m. your pastor texted me to see if it was OK for him to come over.  I told him it was fine because I was up.  He wasn't able to sleep because he found out his niece had just been life flighted to a hospital in NC because she had an accident falling off of a horse.  We talked for a while, while I sat by you, holding your hand and checking on you.  You seemed to be breathing even heavier, but I just kept talking to your pastor.  He left about 1:30 or so.  I went to charge my phone up by the outlet by the TV.  The one thing I was concerned with was your breathing.  I wasn't sure if you were breathing heavier or if it was my imagination.  I asked the Lord how I was supposed to know when it was serious enough for me to call my aunt into the room, just in case you were getting worse.  I mean, how does a person know??  Well, after asking the Lord about that, I turned to your bed, and looked at you and when I did........your eyes were open!  They hadn't been open in a couple of days!  And they stayed open.  You were looking off to the side, so I went to get auntie to tell her that.  She was awake from when your pastor came in, she hadn't been able to get back to sleep.  So, she came in the room with me, and we stood over you, talking to you, singing to you, rubbing your arms, praying with you... You still had your eyes open and were breathing so heavy.  I kissed your forehead and told you how much I loved you!  I told you as I have done several times that you are my favorite gal....my best friend!  You just kept breathing heavily, and then I did something that I never expected, never wanted to do...something I said I would never do....didn't think I could do....  I got down so that I could look right into your eyes and you could look into mine, and I told you what an amazing mom you were.  I told you how much I loved you.  I told you that you have done so much for so many people and were such a blessing to so many.  You have worked so hard!  Then I told you that Bella was on the floor right by the foot of the bed and she was OK, that your sister was standing next to you, and she was OK, then I told you that you were looking right into my eyes, and could see my face, and you could see that I was OK.  I told you that we were all going to be OK, and that it was time for you to take your rest.  I never thought I would be able to do that, but I had a strong feeling that you were holding on because you were worried about me.  Even though your mind had been ravaged from this awful disease, there was some realization still there.  I needed to tell you it was OK.  People mentioned that to me all week, and though I said OK to them, inside I thought, sorry, that's just not going to happen!  Maybe they could do it, but I couldn't.  Well, here I was telling you what I thought you needed to hear.  I was right, not too long after I told you that, your breathing started to slow down and soften, and slow down and soften, and slow down and soften....until you were taking just little breaths.  You took one more, then one more, and then you were quiet, I thought you were gone, but then there was one more.  Again I thought that was it, but there was even one more.  Both auntie and I told you, it was OK.  And you didn't breathe again....you were finally home.  It was a terribly sad, beautiful, precious moment.  All I could do was kiss you, and tell you how much I loved you!  I couldn't believe this was it, no more time with you, no more moments, no more being able to take care of you!  My life had now changed.  It was difficult to think about it, but I was glad that you were no longer suffering!  It's such a hard thing, because as glad as I was that you weren't suffering, I still wished I could have you back, just a little longer!  We called your brother, and I texted your pastor and they both came over.  I held your hand and sat by you for as long as possible before I finally called the hospice nurse to come pronounce you, and then pastor called Carmon Funeral Home to come and take you.

So, Friday, August 10, 2012, at about 2:08 in the morning I lost you...my favorite gal...my best friend.  And now my life has changed...it's hard to know what to do because taking care of you was so much of my life that now it's hard not to have those moments and times.  You are so missed, but I know you're happy to be home with Jesus, and with Pappy!  I know you missed Pappy so much.  I'm so happy for you, but so sad for me!  I will miss you everyday!  But I will remember your strength and try to stay strong, and make you proud!  I love you so much!  I miss you so much more! Thanks for being the best mom and example in my life!  I love you!!!

Holding On

Dear Mom,

I got to wake up to your sweet face again.  You weren't maybe quite as expressive, but you did respond when I asked if you were OK and told you I was taking Bella out and would come back in to change you.  You seemed pretty good.  I took Bella out and came back in to you and you were in pain and at first didn't want me to move you, but we finally did get it done without too much pain.  Your sister came over about 9:30 to see you.  She wanted me to call the hospice nurse as soon as I finished breakfast to make sure she would come sooner than later.  I called the main number, they contacted her, and she called to say she would be coming out.  I told her I was concerned about you and your swallowing.  I asked if they could give you an IV and she said they don't do that.  I told her you weren't getting anything in and I couldn't give you any medication either.  So she just suggested using the meds in the comfort pack, and she went through all of them with me.  She told me I was doing a good job, and said it was good that I had mom home with the people who love her.  That brought on the water works.  It was hard to hear that.  But I got myself in check.  Auntie and the nurse shared some things with me.  I didn't want to cry too much because I had just put on my makeup.  Now lest you think I'm vain, the only reason I was concerned about my makeup is because I was able to get a hold of one of my friends and she was able to come TODAY to take professional pictures of you, Bella, and me...and even Auntie.  I was so excited about that!!  I can't wait to see the pictures!  She is going to edit them as soon as she can, and put them into an online album for me, and then I can choose what I want to use and choose from many different sizes of pictures.  That definitely made my day!  The homemaker companion came after, and a bit later the aide came.  And this time it was another different one, but she said she was supposed to come 5 times a week. So that means that the other aide, that I liked, but struggled with how she handled some things, will not be coming back.  This new aide was pretty awesome, too.  I was really comfortable with her, and she took good care of you!  Uncle came over, too, for a little bit, to see you before he had to go to a practice.  Later, Auntie asked if she could come stay here with us, and of course I told her yes.  I think it's important for her to be here.  I really don't have a good feeling about how you are doing.  I contacted your pastor and he came by with his son.  That was special.  You didn't respond much, but you did wave hello.  I also took time to call your good friend, she hasn't been over here in a while because of Bella, but she said she wouldn't mind coming as long as I was there and held her.  Then I texted a couple of other friends.  I came down here to email my new pastor to let him know what was going on, and so that he would be aware that I want to try to be home with you, if you do make it until school starts, that is my desire.  As I was getting ready to finish it, Auntie called and asked me to come watch and listen to you breathe to see if it sounded different to me.  You do seem to be taking more labored breaths.  That did concern me.  I talked to a nurse friend on the phone to check about what she thought about the eating and drinking and them not being able to give an IV.  She explained a lot to me, and made me feel much more at ease!  So thankful for great friends!
Speaking of great friends...two of your friends that I contacted came by tonight to see you.  I could tell that you recognized both of them, though you didn't say anything.  Then the one friend that is afraid of Bella kept telling me to hold her tight, a couple of times when she did that you kinda laughed a little bit.  It was sweet to see and hear that.  I also told you to show her your wink, and I winked at you, and you winked back!  We did that a couple of times and I was glad she got to see it.  She gave you a little ice cream, and you did eat some.  Then your other friend, skipped a little of her birthday dinner to come see you.  They stayed with you for a little while and had a nice time of fellowship with you!  I am so thankful they came and got to see you.  So you are still holding on.  I have been singing with you, and praying with you.  It's hard to watch you be so restless, but I gave you a little morphine to try to take the edge off.  It reminds me so much of pappy on his last day, he was quite restless.  So, I have been holding on, too, not crying in front of you, but just loving on you and kissing you as much as I can, and touching you, and holding all of these moments close in my heart and my mind!  This is really hard, but thankfully the Lord has continued to give strength!  I love you so much, my beauty!  Always!

Oh What a Beautiful Morning!

Dear Mom,

The morning did bring mostly sunshine with a few clouds, and while that's all well and good, that's not why I gave the reason for the post title.  It was still a little warm for my liking.  Yes, that was the title of one of the songs the Music Therapist sang to you this weekend, but again that's not why I gave the post this title.  Though both of those could be very good reasons. But....the reason I have is so much better than those, just you wait and see!
First of all, it was such a blessing to see you this morning, awake and with the slight little smile you give me in the morning.  I love waking up to that!  But while I was in your room talking to you, I caught a glimpse of myself in the mirror, and noticed my hair was a bit crazy looking.  I mentioned it to you.  I said, "Wow, my hair is a mess, you didn't tell me I was looking so awful."  Then you said the sweetest words, you said, "You look beautiful!"  That warmed my heart so much!!!!  I can't even begin to tell you how much!!  I told you, you were beautiful, too, but you just looked at me and said, "Yea, right."  And I told you that you are my beautiful mama!!  I told you I loved you and you whispered it back to me.  THAT is why it was a beautiful morning!!  You still haven't eaten much today.  I gave you your medicine, but you just kept holding it in your mouth, and eventually it started to dribble out.  I swabbed out your mouth after a while, your tongue looked white and I wanted to make sure that wasn't causing you problems.  You seemed a little better after I swabbed your mouth.  Later the aide came, and the past few days it has been a different aide.  I really like her.  She is so gentle with you.  She talks with you, and encourages you, and sings to you.  I love it!  Today when she walked in to say hello to you, she just started saying how good God is, all the time.  She talked about being encouraged in the Lord and how He wouldn't give us more than we could handle.  She said a few other things.  I was in the kitchen, but could hear a few things she said.  It blessed my heart!  She got you to have a few sips of your smoothie.  I have a wonderful blog friend who suggested putting ice cream, peanut butter, and ensure into your smoothie.  That's what her husband gets, and he loves it.  I think it will be thicker and easier to swallow, I'm hoping so!  I also have been blessed because I put one of the pictures of you, Bella, and me on Facebook, and I have gotten several, and I mean several, messages from friends, relatives, and other loved ones that have said they are and will be praying for you!  So thankful for that!!  Your sister also got here safely this afternoon.  She got to say hello to you for a bit , then the aide was finishing up.  Afterward you were sleeping.  She's sitting in your room with you now, while you sleep.  She said she's catching up on her Waltons, since that is pretty much the only channel you like to keep on.  So, not much has changed, you're still not eating or drinking, but you totally blessed me with your sweet words this morning, another special treasure!  I love you, my sweet, beautiful mother!!  You are loved!  So many people praying for you, saying kind words about you!  I realize how special you are to people!!  You're so special to me......and I love you!!

Storms

Dear Mom,

We just had a huge storm go by, and you know me I hate storms!!  They freak me out!  Normally we would go down into the basement and wait it out.  But of course that can't happen now that you are bed ridden. So,   I stuck it out with you upstairs.  It got pretty loud and we both jumped a few times when those loud claps of thunder came.  I am a little concerned again, because after a pretty good week, the weekend has come around again, and you are back to not eating, not drinking much, and not responding much.  I was able to go to church because the companion came.  She was really nice and quite friendly and was great with Bella!!  That made me very happy and it was great to be at church, and I even got to get some things from Target that I needed before I came home.  The nurse came while I was gone and the companion said she said your vitals were good, but your pulse was a little high, and she'll be coming back on Tuesday to check on you again.  You didn't drink much for the companion either, she said about 3 sips maybe.  You are getting kinda tiny, and it makes me sad.  But as the storm came, I just sat in the room with you and Bella.  We couldn't have the TV on, and I know that is hard for you not to have something to focus on especially during a storm like that one was.  So, I decided to sing for you.  Yesterday the music therapist came and sang for you, and you were enjoying him so much.  It was the first time the TV had been off in weeks. You never want me to turn it off, but you were totally focused on him and enjoyed him.  He sang some oldies like Blue Moon, and some show tunes like Oh What a Beautiful Morning and These are a Few of My Favorite Things, and then some hymns like Deep River, Every Time I Feel the Spirit, The Old Rugged Cross, and ended with Amazing Grace.  A couple of times you tried to join in, but the words wouldn't come so you just laid there and listened.  After you tried to tell him he did a good job, and that you liked it, but could barely get that out.  It was neat to see, and when he sang Amazing Grace, you just closed your eyes and listened.  I am so glad he came and I think you were, too!  So, that gave me the idea today to sing for you, that was a special time.  Even with the storm loudly raging all around us, it was nice to sing and think of songs that we both love!

It's hard to see you like this today, I feel very emotional, but I don't want to cry in front of you, so I try to save it for times when I am downstairs or in another room!  And I just try to smile and laugh with you.  Last night after I changed you, I turned the Olympics on and we watched Michael Phelps last race.  I was cheering him on and then you looked at me, so I jokingly gave an oops face and put my hands down and you kinda laughed a little bit.  That was a beautiful thing to hear!  Then when he won I started cheering louder and you looked over at me and put your little lips together and shushed me. :)  It was so cute and made me smile, so I had to do it a couple more times, just to see you do that again!  Every little reaction I can get out of you is so important and special to me.  That's why today is so hard, you're not responding to me much and just don't seem to be feeling well.  You seem a little restless, and it sadly reminds me of pappy's last day, he was that way.  The thing is last weekend was kind of the same way and then you turned around on Monday and were better.  After the storm I got a little bit of applesauce in you, and you seemed better than you were just a few minutes before.  So, not sure what to expect, but it is really a struggle.  It's interesting that there was such a bad storm today, we haven't had the bad ones around us, they have usually been in other cities and towns, but we got lots of thunder and lightning.  It didn't seem like it was going to end, it kept going, but as with all storms it finally did.  But there is more chance for storms tonight, too.  Hopefully not as bad as this one.  I decided to take pictures on my phone of you, me, and Bella...just in case.... I hate to say that, but I'm just not sure if and when the people I know that take beautiful pictures will be able to do it, and I didn't want to miss the opportunity.

 They didn't come out too badly.  But I still hope to try to get more professional ones done.  So, the storms came and passed and there will be more, but they too will pass.  This is a great reminder to me, there are storms, and some can be pretty big, and some are pretty bad, and scary, but they do end, and the sun does come out again.  I hope I can remind myself of that often!  Your sister is coming back up tomorrow, but this time she is staying with your brother, I'm kinda glad she is coming, because again, I don't know what to expect, especially if you're not eating or drinking.  I know she'll be sad and maybe a little shocked when she sees you and the weight you've lost since she was last here.  I hope you'll be able to enjoy some more time together this week.  It's a struggle for me right now, because I just want more time with you, but I also don't want to see you starve to death or wither away to nothing.  I would rather you go, looking more like yourself and with still some recognition of me.  I don't know if this week will bring some stronger days as last week did, or if you are wanting to just be done.  I just keep praying for the Lord's will and the strength to handle it.  So many memories going through my head, and so much I am missing.  And this weekend has been pretty lonely for me.  As I sit at the kitchen table by myself, I realize that this could be the normal thing, just Bella and me, it makes me really sad.  No husband, no boyfriend, no kids, no sisters and brothers, just Bella and me.  But we will be OK mom, you don't need to worry about us.  So, though I can't quite get out the words  or the OK thought to let you go, I do pray that the Lord will heal you, whether on this side, or taking you home with Him to heal you.  Then I pray for peace for me.  Mom, I love you so much!  You are my favorite girl and my best friend.  I hope I can write you a little more, but either way my love for you is so strong.  Thank you for who you are to me and all that you have been to me.  I love you!!!

More Moments with Mom

Dear Mom,

I was worried about you this past weekend.  You weren't very interactive at all, not really talking, not smiling, not eating much, not even drinking much.  I kept watching you as you slept to make sure your chest was rising and falling.  You may not have been yourself, and I was a bit nervous, but a new week brought about new changes.  You still didn't eat yesterday, but you did drink the smoothie I made for you.  You were more interactive.  That made me happy!  It was a crazy day, I had planned to go out at noon, I was originally hoping to have lunch with a friend, but that didn't end up happening.  But the homemaker/companion was coming at noon and staying until 6.  That was going to be a nice amount of time to get out and do a few things.  Well, as I mentioned before, things don't always work out as planned.  The aide was supposed to come about 9:30 so she didn't cut into the time the companion would be there.  The occupational therapist came about 9:30 for her last visit, I had to thank her for helping me and giving such good advice!  She was a wonderful help.  I waited for the aide and she didn't come.  I hadn't heard from the nurse yet either as to when she was going to come.  It was almost noon and still no aide.  Then a couple of minutes before noon she came!  Yikes!  Not long after that, the companion came...oh well, I tried.  The aide got you washed up and asked if I wanted to get you up, but since I wasn't going to be home, I told her no.  She ended up in the kitchen with the companion and myself talking while we waited for me to be able to leave.  The nurse finally called and said she would be coming about 1.  So much for getting out at 12.  The nurse came and I asked her about a few things, a wonderful friend from church let me know to ask for things from hospice because they can get lots of things for us.  That was a huge help to be able to know that!  I asked her about your eating...or not eating and she said to remember that you aren't getting up or moving much so you aren't going to eat as much.  She said to give you some Miralax because you were saying your stomach hurt a little, and that would help.  She left, then the aide left, and I gave the companion a heads up about the rest of her time with you.  She was wonderful!  I really liked her.  I love this Angel Touch company, they have amazing companions!!  My mind was definitely at ease as I left.  I know this is going to sound a little vain, but I went to get my nails done.  But it had been a while and they were coming off, and when I would change you, they would bend and hurt, so it was very needed.  After that I went to go get the oil changed in my car.  Once I did those couple of things, I didn't have time to head to Target as I had hoped, it was already a little after 5.  There were a couple of things that I did definitely need to get so went and got them quickly before heading back home.  I got back a little early, but you were great and Bella was content and she was just hanging out with you.  You did have some smoothie that day which was good.  Today you had some smoothie, then the aide came, washed you, and we got you up.  She tried to have you finish the rest of the smoothie, but she kept after you, telling you to swallow.  You wouldn't, you kept holding it in your mouth like you have been doing.  But she kept trying to give you more.  She would put the cup up to your mouth to make you take more, and then got a spoon to try to get more in your mouth.  Next thing we knew it was dribbling out of your mouth and down your shirt.  She wasn't happy about that, but I wasn't happy that she tried to keep giving you more, that's why you started letting it dribble.  I have to learn to speak up on your behalf!  Not long after the aide left you wanted to go back to bed, so I got you back in.  For dinner I was able to give you about 8-10 bites of pancake!!  I was so excited, that was the first food that you had eaten in a few days.  You also had more smoothie.  That blessed my heart!
On Monday, when I was leaving I was teasing you about being good and not causing any trouble or something, and you looked at me and at the companion and said, "Yea, right."  You smiled at me, and told me you loved me and waved.  I love those moments!  Tonight after I fed you, I asked you if you loved me, and you shook your head yes, then I asked how much.  You put your fingers together with a little space between them, and I acted shocked and told you that I loved you with outstretched arms, but you still would only give me a little opening of the fingers, I had to laugh.  You were so cute!  I love these small interactive moments with you.  A couple of times you took my hand and we just held each other's hands.  So, what a blessing this new week has brought to my heart.  Such a treasure!  Love you so very much!!!!

The Ups and Downs

Dear Mom,

It's definitely been an interesting time.  Auntie finally left last Friday, I think.  It was nice to have the house back, but it was really different because then it was just us!  Family reunion for pappy's side came around and I didn't go on Friday night, because I didn't want to leave you, but I took a chance to go Saturday night and Sunday afternoon.  You were doing fine, and you don't get up on your own anymore, and you mostly sleep, so I decided to go for a little bit each day.  I knew it was something I needed to do or I would regret it.  We only do this every two years.  It was so great to see the family!!  I was so glad to be able to spend time with them!  They of course asked about you and I told them you have had good and not so good days.  I got some nice pictures and brought them home for you to look at.  I'm not sure you recognized some of them, but some I think you did. It was important for me to be able to do this and have pictures to show you and talk about with you.  Going and being with family definitely was good for my spirit.  I needed to see them again, especially to see and spend time with Auntie Alberta and Uncle George, pappy's oldest brother and sister, 88 and 89 years old.  Both of them live alone down on the property in Georgia and they looked great!  Cousin Patty had a party for Auntie Alberta on Tuesday for her 88th birthday.  It was another nice night!  Uncle George is also suffering from Dementia, but when he was asked if he knew who I was, he said he knew I was Buddy's daughter, but just couldn't remember my name.  I was so excited to hear that!!!  Cousin Debra and I chatted a lot during the reunion because she goes over and takes care of Uncle George every day.  We talked about many similar experiences.  She said Uncle George loves his sweets too!  That is so you!  She talked about answering the same questions every few minutes.  You don't ask anymore, you haven't been talking much, but I remember those days well!  It was wonderful and a bit emotional for me when everything was over and I had to say the final see ya!  I'm so glad I decided to do that, to see them, touch them, hug them, talk to them once again.  I really do hope and pray I can see them all again sometime soon!
As I said, you have had some good and some not so good moments.  You have been a little more interactive lately which has been nice. I have added coconut oil to our diet because I have heard some wonderful things about it.  The coconut oil has seemed to help your mood, you haven't been as agitated with me, and you have been asking more things lately.  A few days ago you asked me what day it was, another time I was watching TV with you and you asked if the lady was the mother of the couple of kids that were on.  We were watching Dog Whisperer and he was helping a family, so you put that together.  Another day when I went into the room to check on you, you asked me where I was before.  I wish I were able to blog more consistently because then I could remember more things more clearly.  It just is hard to do when there are always different people over the house.  It is great to have the help, but I never know when anyone is exactly coming.  They call 20 min. to an hour before they plan to come over.  Then there are sometimes 2-4 people that come out to see you or me, between the care manager, the social worker, the hospice nurse, the home health aide, the occupational therapist, the massage therapist, and the homemaker/companion.  Don't get me wrong, I am so glad for all of the help for you.  That helps me so much.  So, yes, there have been those good signs of you interacting with me and the aide or the companion.  Last week when the aide came on Monday, you were back to your jokey person.  I asked if you loved me when the companion was there and you said, "Not really."  The companion and I had to laugh about that.  Another time you told her, "That's my daughter."  She asked what my name was but you couldn't tell her, you started with a "Sss...", but that was all you got out.  So she went through a list of different names and you kept shaking your head or saying no.  Then she asked if it was Stacey and you grinned and nodded your head yes.  There have been some sweet moments like that.  Last night after I changed you and was heading to bed, I put my head by yours and I felt you press your head toward mine and I told you I loved you, and you whispered back, "I love you, too."  That continually blesses my heart.  You have held my hand, you have rubbed my hand with your thumb, you've given me winks back when I wink at you, you have smiled for me when I asked (after asking a couple of times:), you have told me you loved me, when I asked if I was your favorite girl you said yes.  These are all things I want to treasure always, which is a reason why I write this blog...to keep those things close to me.
Then, there are days like yesterday and today.  You haven't seemed to feel as well.  You haven't eaten much either.  You seem to be in more pain, and you haven't talked to me as much.  You have been keeping food in your cheeks and not swallowing it right away.  You haven't had much problem swallowing food, but you have had trouble swallowing drinks.  You don't choke or anything, but just gulp big, and close your eyes, or you just hold it in your mouth for a while.  A couple of weeks ago, you ate a pancake and your egg sandwich, yesterday you actually ate more than I thought.  You had some pancake for breakfast again and later in the day, then later on you wanted some ziti and ate some of that.  Today you barely ate an egg and you keep saying you don't want anything else.  I tried to get you to drink your Ensure, but you won't drink that either.  It is days like these that I worry that I won't have you much longer.  But just this past Friday, the home health aide got you up in your wheelchair and you sat in there for about 6 hours because you didn't want to get back into the bed.  I finally just had to put you back so I could change you.  This was the first time I had moved you by myself since you came home from the hospital.  I had been doing it before, but everyone said it's a two person job, so I stopped trying.  But the aide got you up by herself to see if she could, so I told her I would try to put you back by myself, so I did and it was fine!  I love the aide, but sometimes she doesn't seem to have as much patience with you and keeps telling you to do the same things over and over and I see you start to shut down.  But she is good with you and tries to help you not just lay there watching TV.  I just hope she's not draining you, and I pray for wisdom if she's not the right one, although she is great at what she does.  I worry on days like today that you might not make it to tomorrow, but I know it's all in the Lord's hands and I trust Him.  I have selfishly prayed for a little longer with you.  I really desire to get a family picture taken soon, one with you, Bella, and myself.  We haven't taken a picture together since I have been teaching, which is about 16 years.  Both of our churches had their new directories done and we got our pictures done, but you did yours alone and I did mine alone.  Last fall I wanted to try to go to a professional place to get our picture taken with Bella, but sadly never followed through.  So, I hope and pray you will be willing to hold on so we can do that soon.  You are my heart, you are my best friend, you are my favorite girl and I love you so much!!!

Calgon...Take Me Away!!!!

Dear Mom,

It's 10:40 at night.  Not usually a big deal, but this was the earliest time I could get down here to write to you!  This is killing me.  This was supposed to be a week where your sister and her husband came up from VA to help me. I wasn't really looking forward to it, because I often feel overwhelmed by your sister.  She is very nice, but very outspoken with very strong feelings.  I never quite feel good enough.  So, they got here Sunday afternoon.  Only Auntie is staying with me not Uncle, he's staying at your brother's house.  I'm not sure how long they are planning to stay, they haven't said.  :-/  Monday, I got a call from the Masonicare nurse, she hadn't planned to come that day, but after talking to me, decided to come out.  About the same time, the Home Health Aide came to wash you.  The nurse was surprised that you were a lot less mobile than before.  I asked about Physical Therapy coming out to the house because your right hand and wrist were still dropped and turned in on themselves.  The only way it will get better is with some therapy.  The nurse said they wouldn't do that because you can't retain the information, so I would just have to work with her.  I was just about in tears because being your daughter, you will give me a much harder time than someone else.  I felt like they were giving up on you, and there was nothing I could do about it.  Auntie was there, but she said she sort of understood what the nurse was saying.  The nurse was going to send a Palliative care nurse out to the house the next day to talk with me.  I think Monday night was pretty regular, I think your brother may have come over, too.  There wasn't much down time for me, because I feel like I have to be a hostess the whole time.  Tuesday, the other nurse came out I thought she was coming about 11:30, but it ended up being closer to 12, but....she wasn't a Palliative care nurse she was a Hospice nurse.  I don't like that word, and Auntie and I were a little surprised.  But she said the doctor ordered it for mom.  Not that they think you don't have long, but for some of the services and things you would need.  The more I listened to this nurse, the more comfortable I became.  We needed a hospital bed to make it easier for you, me, and the Home Health Aide.  The only way we could get that was through Hospice.  Then she said the words that totally won me over...she said you could have Massage Therapy and Music Therapy!!!  That sounded wonderful to me, for someone like me who LOVES music, and knows how important music is in life let alone for Alzheimer's patients!  They will also take care of meds and have them sent to the house, so I don't have to find the time or try to remember to go pick them up.  So, though I don't like the word or thought, I did sign you up for Hospice.  After talking to me, she went in to take your vitals and see you.  She was very kind and very helpful!  After she left the Home Health Aide came, I had been waiting for her, too, because I thought she said she was coming around 11.  So there went the morning.  I had breakfast, but right as I was finishing my uncle came into the kitchen to ask me for a pen or something to help get the spring out of the knobs of the sink.  He was fixing the leak.  Then after I brought it to him, he suggested I just stay and watch.  So, I did, and went back to super soggy cereal, not my favorite, but it was a teeny bit.  I also in that time during breakfast had to answer the phone a couple of times...ugh!  The Home Health Aide washed you and then washed your hair too.  We had to cut it a little because the back got matted.  It looks great though, don't worry. :)  You didn't seem to mind at all.  But guess where you were when we were cutting it???  Sitting on the edge of the bed!!!!  You haven't done that since before the last hospital visit!  I was beyond thrilled to see you sitting up.  We decided to put you in the wheelchair that friends donated to us, the Aide and I got you over to it.  It was a struggle, but I was glad to see you sitting up like that again!  I wanted to keep you in the chair because they were supposed to be coming with the Hospital bed and it would be easier if you were already out of bed.  You kept nodding and leaning forward in the chair, so Auntie kept getting nervous and wanted to get you back in bed.  It was around 5 or so at night, so she didn't think they would be coming.  Well, Uncle and I got you back in the bed and comfy.  I was hot and needed a break from everything so I came downstairs, was going to blog a little, and got a teeny bit done.  Then next thing I know, Auntie is calling me upstairs to tell me that they were here with the bed...UGH!  So, back upstairs I went, had to put Bella away again, poor girl.  And had to move you out of the bed to the wheelchair again, which is painful for you, which is why I wanted to try to keep you in...UUGGHH!  Oh well, they finally got it taken apart and into the living room.  They asked what I wanted to do with it, I just said to put it out on the lawn, there's no real reason to try to keep it.  Though it makes me sad to see you and dad's bed taken out of the house.  They don't want to get rid of it, though, they want to put it in the smaller guest room.  UUUGGGHHH!!  I say a big ugh because there is a lot of stuff in there that I need to go through, but haven't had a chance to, and Uncle was already talking about that.  But with everything that went on that day, I wasn't up to even thinking about that.  I missed lunch, too, because as I started eating that's when the Aide needed a comb and then scissors.  It was cereal again, I got in a few bites then went to help, when I got back about 10-15 minutes later, it was way too soggy and lukewarm to eat.  So, no lunch.  Then didn't have dinner until about 7:30.  I finally got downstairs after 8:30 or so.  Got a little down time, but still things to do. Today was busy again, the Care Manager came out for a while. Your Pastor came out about then, too.  Then I took Bella for a little walk.  When we got back the Aide came.  Uncle was going through more of my bags and things and trying to clean things out.  Not so comfy with that, but not much I can do.  I already started taking some things out of the guest room since he was talking about going through that.  He's going to be staying here tomorrow.  One of my friends from church came over and helped me get stuff out of the guest room and organize the stuff I was keeping.  Auntie and Uncle had left to go to other Uncle's, then other Uncle showed up here, not realizing they were at his house.  He saw you for a bit, then went to see them.  So we got the room cleaned up nicely.  As we were doing that, a home security place came by.  They were here for a while, then since I went with it, they had an installer that came out afterward.  As I was talking to them and setting things up, Auntie kept calling me to come help you get straight or whatever.  So I was running back and forth.  I tried to straighten you, but you are so stiff, so I did the best I could, with Bella in my hand, I'm trying to straighten you out, keep her from jumping down, while Auntie watches.  She wasn't content as to how you were still laying, but I couldn't do much better for the time.  So that was frustrating!  After she asked me about your dinner, so I heated it up and brought it to your room, as I was still talking to the guys.  It felt a bit rude to me.  I finally was able to get dinner for myself about 8:30 or after.  Then Auntie tells me Uncle set up an appointment with his attorney for me about POA or becoming Conservator, hadn't done that yet.  But the Hospice nurse said I don't have to have it, but they are making me go.  We are supposed to leave about 3 tomorrow, and other Auntie will come to stay with you.  But the homemaker/companion was supposed to come tomorrow for the first time and I need to meet her.  I told Auntie, but she just said other Auntie will be here.  That's not OK because for the first visit I need to be there, plus need to handle Bella.  So now I have to try to remember to call someone to tell them not to send the homemaker/companion.  Then I was writing earlier and Auntie called because you spilled your juice on yourself, so I had to change you... your shirt, your sheets, your bed pad.  I was sweating terribly.  So, needless to say, I'm wiped out!  Stressing some, and feeling forced to do things.  I probably need more than Calgon to take me away!  You have been pretty good with me the past couple of days though, which is nice.  Well, this is long enough, and I'm sure you'll be tired just trying to read it all, so... I love you!!