Not Nearly Normal

As told by Terry:
I was standing at the partially opened front door and saw Milda and Lizzie standing outside. I said, "Hi Milda," and then she rang the doorbell. I thought that a bit odd, but maybe her reflexes were a bit slow today. They both came into the house, and Lizzie asked me, “Is that YOU, Twin Sister?” When I told her no, she asked, “Where IS my Twin Sister?” I told her, “She’ll be home shortly.” As she walked through the living room to the kitchen, she told me “You don’t belong here.” Nonetheless, I reached for her tray of newspapers and magazines and handed her some of them at which time she exclaimed, “Oh THERE they are!” She walked directly to her favorite seat in the house, which is at the kitchen table, sat down, and started her paper browsing. Milda left. I brought her more of the papers, and she said, “Oh hi Honey” and sat there talking to herself for a while frequently asking, “Where is my twin sister?” She seemed satisfied for a few minutes with “she’s on her way home” before she’d ask the question again. She appeared content.

Enter Twin Sister.
Lizzie seemed OK with seeing me when I greeted her at the table, but she would not stand and give me a hug. Seemed like AD Lizzie to me! She started in with, “Are we going out?” Yep … AD Lizzie to me! I got comfortable for the evening, poured myself a glass of fine red, and laid on the sofa to relax a bit. All the while, my sister sat at the table,talking her usual gibberish with statements such as, “They shouldn’t do that to my Twin Sister.” “She didn’t say that did she?” “Did SHE tell you that?” Seemed like AD Lizzie to me all right!

Now Milda had told me she was “independent” about getting dressed this past week. So I encouraged her for her early evening bath, and Lizzie was OK with that idea. However, she showed no clue as to how to undress for her bath. I will say she screamed a bit less than usual through the process, but once out she did not know how to even begin to dress herself. Seemed like AD Lizzie to me again!

Back at the kitchen, Lizzie began asking about going out for dinner. I showed her the pizza I had bought, and she commented, “Oh I can’t eat the whole thing” as she began preparing herself to dive into the unbaked pizza. I said, “Whoa there … in a while, OK?” When it WAS time to eat, Lizzie had a difficult time eating by herself tonight, and I even had to feed her to get it all in her tummy. She kept saying things like, “I’m not stupid you know.” “I can’t eat any more.” “I’m not in the NFL you know.” “I’m not hungry.” She seemed like AD Lizzie to me throughout the meal.

Once we got her early evening medications down her throat, Lizzie is now relaxing comfortably at the table with a pen in hand as she is folding and writing in papers. I am sitting nearby, and every time I cough, she gives an exaggerated startled response and asks, ”What was THAT?” I’m surprised she even hears it.

I tell the folks at the group home to let her do this, but I never see any newspapers there for her. I sometimes take one over, and even then in a few days it is gone. They like to keep the house very neat, but geez … Lizzie can stay busy with this activity for HOURS and be very very happy doing so.

Last night I did lots of research online about what Milda had told me about Lizzie showing a change in her independence. What I learned is that this type of positive change is common; lasts a few days; might preempt a significant decline in cognitive functioning.; and is called a “nearly normal” episode. If this is all true, surely I missed these good days, which I feel sad about.

But you know what? I love Lizzie so much, and I was so happy to see her tonight that I don’t care where she is in this journey of hers … I’m just glad she’s home with me for the weekend!

A Good Change

My heart is pounding hard and fast.

I just received a phone call from the group home with a report that my sister's behavior has changed in that she has become more independent this week. She is dressing herself, feeding herself, and putting herself to bed. She is happy and has not mentioned me much at all. I can't help but wonder WHY? She DID have a great weekend here with me ... WHY?

Have you ever heard of what is called the "last hurrah"? You know ... the last few days prior to a person's death from a debilitating illness when the patient seems to be doing really well ... so well it's hard to even imagine they are sick. Then they die.

Is this what is happening to my sister? Oh my goodness ... I am sooooo scared and filled with so many emotions right now. I'm afraid to write everything I am thinking ... I don't want to jinx anything. Then again, I know I can't do that because God is in control I am planning on having her here with me this weekend, and now I can hardly wait until tomorrow afternoon. Oh dear!

Prayer time for God's grace and mercy.

Do's and Dont's

Lizzie had a wonderful weekend here, and I am SO happy about that! Yesterday we strolled around Lowe's basically in search of a new paint color for our kitchen, and then I took her to the salon with me. She was having SUCH a good day that I asked her if she would like to have her hair shampooed and styled. To my surprise she said, "Sure, why not?" OMGoodness! She was like my ol' twin sister who always loved to be pampered almost as much as I do! She walked out looking absolutely adorable with short bangs and a nice layered chin-length cut.

The group home has a hairdresser come in every now and then to cut everyone's hair which is a convenient way of keeping the ladies groomed. Trouble is, they all get the same butch-like cut, and that just isn't Lizzie. Lizzie is a fashionista like her sister, although again ... to a somewhat lesser degree. Nonetheless, I have always done my best to keep her looking good, in-style, and well-groomed.

We came home and did a steak BBQ on the patio. Lizzie takes a very long time to eat her food these days, and tonight was no different. She seems to get so distracted with her environment that she just can't get the task done without aid in the form of regular prompts and/or actually putting the food in her mouth. I know they feed her at the group home in order to get the event completed in a reasonable amount of time, but I would prefer she do it herself as much as possible.

Lizzie used to have exquisite table manners, and I NEVER hesitated to take her ANYwhere for a meal. Now her skills have declined such that she doesn't even hold a fork correctly. I see her putting food on it with her fingers, and sometimes even eating with her fingers so as to avoid the fork. Using a knife is a skill long gone. These observations break my heart because the scene in and of itself is so barbaric in many way I wonder where can it go from here. Lizzie doesn't like it when I try to slip a fork or spoon into her mouth. She screams, "Stop it!" and yet I just don't know of another way to get her to eat a complete meal.

I think ahead to our traditional holiday gatherings which are just around the corner. Watching Lizzie eat is kinda gross these day, and I can only hope our family of friends will understand.

Smells Bad

I went to pick up Lizzie yesterday to bring her home and to spend the night with me here at OUR house. I walked in to many aromas floating around the group home. I'm not one for too much Filipino food, so the shrimp and rice was somewhat unpleasant for me. Then again, maybe it was the odor of another woman's colostomy bag that overwhelmed my senses. Well, let me be honest ... it WAS the bag that needed to be changed that I found most offensive. All three house residents were sitting at the kitchen table eating lunch with this odor hanging over the room.

Now I don't know what is wrong with me, but I just couldn't make a fuss in front of all of them ... especially in front of Julie who wears the bag. Surely that strong of a smell is an indication that the bag needs to be changed, and NOT changing it ... is that neglect? At the least, it's just plain LAZY. I DON'T WANT MY SISTER LIVING IN THIS ENVIRONMENT!

So what should I do? If I tell the caregivers, they will think I am complaining and probably won't do anything differently anyway. If I tell the Provider (OWNER/BOSS), the caregivers will be mad at me for reporting them. Either way, the caregivers will be mad and my fear ... ? UGH! This is TOUGH. I MUST report it to the Provider. No one deserves to sit around a kitchen table and have to smell that ... NOBODY ... and not under any circumstances.

Not long ago, while I was in the house, the caregivers WERE changing Julie's bag in her back bedroom. The order was unbelievable, and I don't know how I did not vomit. I commented, and the caregiver closed the bedroom door which helped somewhat. OK ... now I know these things need to be done ... but NOT under circumstances that EVERYbody has to smell it. On that day, I asked Milda and Rhoda how often they change this bag, and every replied "Every 3-4 days." WHAAAAT? I don't think Julie has an advocate, so maybe I will have to be that for her.

I will tell Elizabeth tomorrow.