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!!


  1. Oh Stacey, I'm so sorry your having so much stress and confusion. Please don't let the relatives 'control' make you feel like you aren't doing a good job in keeping house and taking care of your mom. You're a 24/7 caretaker, they don't have a clue what your going through all the time, and you're doing a good job.

    I'm praying that hospice will become as helpful to you as it has been for me. They will be there for you and provide a lot of much needed services. Even though David is at AlzCare, they're providing medication, checking in on him with a nurse etc....
    Keeping you in my thoughts and prayers need some peace and rest. Here's hoping the relatives go home soon.

  2. Dolores, thank you sooooo much!!! It is so nice to have someone just acknowledge what I'm going through. And thanks for telling me that I am doing a good job. Times like those make me start to wonder and question whether I am. Hospice has been truly wonderful. So thankful that I have them! The meds are mailed to the house, and other needs that we have, it's been great! Thinking of you and David! And praying for you! Hugs to you!!