Sunday, July 29, 2012

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 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!!!

Thursday, July 12, 2012

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!!

Tuesday, July 10, 2012

Getting Tougher

Dear Mom,

I know I just wrote last week about your hospital to home moment a couple of weeks ago.  But as I was writing that, you were actually back in the hospital.  Tuesday, July 2, I called 911 to come take you because your right hand totally turned in on itself.  Your wrist just drooped down and you weren't able to straighten it, and you had been struggling walking, seemed like you had a tough time moving your right leg properly.  So, I called the nurse first to see what she thought.  I was worried it could be a stroke, she said to call 911 right away.  They came and took you back to the hospital.  It was about 7 p.m. when they took you and you still hadn't gotten a room at 2:30 the next morning.  They finally just told me to go home because they were going to be taking you down for an MRI soon.  So, I left and went back the next morning.  The doctors said it wasn't a stroke, but they weren't sure about the hand.  Later a neurologist said it was something he called wrist drop.  He said there is foot drop and this was probably wrist drop.  He said you probably slept on it for a long period of time and it weakened or something.  That is the only side you sleep on.  He said it could reverse with some exercise or something, and he said a wrist splint could help.  They found you have a UTI and you were dehydrated.  They didn't give you an IV, but just had water and juice for you.  Sorry, as I'm writing this it's about a week later and your sister and her husband are here to help with you.  But today, I'm a little stressed.  So, I'm gonna skip ahead for a moment.  There has been so much going on, but when I have to entertain guests, I don't get to relax and just come get my reprieve from blogging and it's killing me. I appreciate their help, but today I waited for the nurse to get here.  I thought your Home Health Aide was coming around 11, so I waited for her.  The nurse called to say she was coming about 11:30. So  time was spent waiting for them to come.  The nurse came about 12, that was an interesting meeting that I'll talk about soon...I hope, if I can keep finding moments to come down here and blog a little.  I feel like this post is all over the place as it is.  But it's because I started it this morning, then couldn't get it finished before breakfast. Then, like I said waited for your Home Health Aide, and then waited for the nurse.  When she got here we had lots to talk about.  She was very helpful!  I won't try to get into that right now either so I can finish writing this to you.  Hoping to get it done without more interruptions.  The nurse came and we talked for a couple of hours and made some important decisions.  Then a little after the Home Health Aide came.  I tried to come down here and finish the post, but then they needed me upstairs again.  I came down another time, but by the time I started to write some more on this post I was called back upstairs because they were coming with your bed.  So, I had to go take care of that.  I hadn't even been able to finish my lunch because people called on the phone, other people needed my help with things.  It's been busy today, and I have just needed this time to write to you.  There is so much going on and I don't want to miss putting it into words, keeping up with what is going on with you. There have been some crazy changes, so I don't want to miss writing it down so I can check when things started to change and what happens.  So, yea, this post is all askew right now, and probably doesn't make much sense.  I guess that's how my mind is going right now...crazy!  So, I'm going to close and try to write more understandably tomorrow, or hopefully sometime soon.  I love you!

Thursday, July 5, 2012

I Miss You More Everyday!

Dear Mom,

You were in the hospital from Friday to Monday.  They did all kinds of tests and everything came back negative, thankfully!  I was so glad to get you back home, I wasn't sure if they would try to put you in a rehab place or something before coming home.  But they let you come back so you could be in familiar surroundings.  I was glad, because I knew you wanted to be home with Bella.  At the hospital you kept asking where she was, you kept asking if she was in the other room.  I kept telling you she was home and she was fine.  Thankfully that answer sufficed.  A couple of times you said you were ready to go get home to Bella.  But I let you know, you had to get stronger and then the doctor would let you come home, and you were OK with that too.  So, I'm glad you got to come home to Bella and me!  You just haven't been back to your new "normal".  You have had some good days, but then you seem to be getting weaker than you were before you went into the hospital.  Before you went into the hospital, I could help you stand by holding your elbow, telling you to hold mine, having you lean forward, and with a good grip on me and the chair arm or table you could stand.  Now, I basically have to pick you up, you're not standing well at all.  You haven't really been on any meds except one low dose Bayer aspirin.  They want to decrease your Aricept to 5 mg.  I wonder about that because you were doing so much better on the 23 mg.  But then some of your problem lately seems to be coming from your Arthritis or sciatic.  You are dragging your feet more and can't stand up straight.  So, I'm at a loss to know what to do to help you.  I can't get you out of the house to get to the doctor because you are not walking well enough.  The VNA comes over once a week, and a Home Health Aide comes three times a week to bathe you.  You have been OK with them.  We are still working on a Homemaker/Companion from a different company called Angel Touch.  Everyone understands my desire to try to keep you home, and they are trying to work with me, which I appreciate.  But even the past couple of days you seem weaker.  You haven't been drinking much, and don't always finish everything anymore.  Yesterday you could barely hold your cup in your hands.  I'm not sure what's going on and why you are getting so weak, so quickly.  But I have really been missing you!  You're my best friend!  It kills me to think we won't get to just ride in a car and even just look at scenery together, you won't be coming with me to the mall to get our nails done together.  You probably won't even get out of the house to see the flowers that I planted for you, this year I planted your Impatiens in the front.  You probably won't get to see or drive in the new (to me) car I was just surprised with late Sunday night, early Monday morning.  I just bought a new bath seat for $100 and I don't even know if you'll be using it much anymore if you're not getting around better.  So many things I don't know, so many things I'm missing with you, it's difficult!
I wanted so badly to share and have you understand this new (to me) car story.  So, I'll tell you here.  Sunday was Pastor Rob's last Sunday, the Lord has called him to be a chaplain in the US Air Force.  So it was his last sermon, it was definitely an emotional day.  I was glad I was able to make it.  You weren't great, when I left you, you had just sat up from being face down on the kitchen table, sleeping hard.  But I knew you would be OK for the few hours I would be gone.  I said some teary goodbyes to him, his wife, the two boys that I have watched grow up to 7 or 8 and 6 years old, the sweetest little two year old girl, and adorable few month old son.
Aren't they a beautiful family??
 It was so hard to say goodbye, but I am excited for them to go on and serve the Lord where He wants them.  Well, that morning one of the ladies from my church gave me a card that was such an encouragement, and she had a wonderful poem about growing in the valley in the card.  What a blessing!!  Then one of the ladies from your church called to see how you were, then she asked specifically how I was doing.  That meant so much to me!  I shared some things with her and she prayed with me.  It was so nice to have that opportunity to share!  Well, now to other news...
About 11:15 Sunday night I got a phone call from my pastor's wife.  She said she and pastor had a gift for me, but they wanted to be able to give it to me face to face, but they would be leaving super early in the morning so if it was possible they would love to have me come over then.  I was surprised, I couldn't imagine what they wanted to give me, I thought maybe they had some cute pictures of the kids for me or something.  They know how much I love those kids!  I got there and talked with them for a bit, then pastor went over to the kitchen cabinet and got out some money for me.  I broke down of course, and told them I hated to take it, because we have been doing OK lately.  But they said it was for an oil change and needs for my car.  I was shocked, but so blessed.  I really did need an oil change badly.  Pastor and I were talking about my car, and some of the things about it, he just let me talk.  I told him how thankful I was that it still worked, that I didn't have a car payment and it got me where I needed it to, but you have a hard time getting into and out of it because it is so low.  But still thankful for it!  It's your old car, I got it from you after mine conked out.  My '99 Camry conked and you weren't driving your '96 Corolla anymore because your forgetfulness was starting and that would have been dangerous.  So, it has lasted a while.  As pastor and I were talking, Megan walked around to the other side of pastor and then told them he was taking too long!!  She started walking toward me with a smile, and pastor was grinning wildly too.  Megan walked toward me with a..........KEY!!!  It was a key to their car!  They wanted me to have it because they love me!!  Can you believe it, mom???!?!?  Pastor said, they have HEARD me coming into the church parking lot for several months now, and they wanted me to have a reliable ride.  What a blessing!!!  I got home after 1 a.m. and I shared with you the good news.  You smiled and said a little something, but you didn't quite understand.  I still can't believe it, I shock myself when I see it in the driveway, lol.
So, yea, I REALLY, REALLY miss you and certain aspects of our relationship!  But I love you more and more!!  Love you!