Wednesday, June 24, 2009

MMES score: 14

Hi everyone, it's been a very chaotic time in my life, I'm very sorry I haven't let you know more about what is (or isn't) going on.

My mom is about the same. Very agitated and confused. She knows my name in some sense, but she frequently doesn't connect it with me. The other morning, I guess, before I got to the nursing home, she was very agitated and all she would say was my name--"Carol (my maiden name)!" over and over again. When I did get there, every worker asked me if that was my name.

Most of the time she doesn't recognize me when I first get there. But after we spend some time together, she seems to be more comfortable and have a clearer idea of why I'm there. She remember's DH, and my brother and asks constantly where they are. The other night she asked me "Where's DH?" I told her he was home cutting the grass (yay!) and she said, "That's impossible. The grass wouldn't take that long."

Sometime she just repeats "there's something very, very wrong..." over and over. And she is often suspicious of the staff--this morning she called the nurses' aide "dangerous", although I've been there every single day, and have never seen that aide exhibit anything other than love and respect for my mom.

She won't eat unless I am there. I've been getting her to drink Ensure shakes, to make sure she gets enough calories, but honestly, I am having such a hard time dealing with this....I always thought I would kind of see this coming, you know? Like maybe she would have an "episode" and then be ok for a few weeks, then have more, until I knew that this was the "new normal". I didn't expect to have her wanting to go out to eat after a doctor's appointment one day, and then a week later not even know who I am. It's so shocking and scary.

A huge part of me still is not accepting this. It just doesn't happen like this in the books....even the Alzheimer's web sites don't lead me to think this is normal. So I really want to believe it's not normal. I want to drag my mom, somehow, down to the hospital and insist on more tests, more treatments...have them check her stomach, her heart...but in the state she's in right now, the intellectual part of my brain knows that even if they found something, unless they could fix it with a pill, she probably wouldn't make it through any kind of treatment.

Yesterday they administered the mini mental status exam, which is a common way of determining the skills that an Alzheimer's patient has. She scored 14 out of 28 (Usually the test is 30 points, but 2 questions they didn't do, because I told them that she never knew her address or phone number when she moved to the assisted living--there was really never a need and it just seemed like a lot of work to help her remember something when I was doing all the driving anyhow) Anyhow, when she was in the hospital/nursing home in February/March, she scored a 19. So this is a very significant decline. I asked them if they could re-administer it in a couple of weeks just in case. They said they could. I'm not sure if there will be a change, but I just have such a hard time accepting this still.

Today I went to the nursing home to make sure my mom ate breakfast. She says things that make sense, and I don't know what is real. She says she is too hot. Then she says she is too cold. But she is in the same room and nothing has changed. I don't know if she's really cold or hot, or just feeling something else that she can't express? I gave her some chocolate pudding and she got really angry with me, yelling "THIS ISN'T CHOCOLATE, WHY ARE YOU DOING THIS TO ME???" I felt terrible. She was angry because I wanted her to eat. She was angry because she was hot and cold and wanted her sweater on, then off, then she had to go to the bathroom, then about 30 seconds after she got out (with the help of an aide), she "had to go" again, so we called the aide again. I tried to ask her to wait, but she said she had to go right now. Then, when she got done with breakfast, we went back to her room and she wanted to take a nap, but I tried to explain that almost all the aides were down helping with breakfast, so it was going to be a few minutes before someone was going to come, and she got angry again. I found myself getting pretty frustrated, so I gave myself a "time out" and left. I'll go back for supper.

It must be even more frustrating and scary for her to be in this dark land where people do things you don't understand, and you don't remember from one minute to the next what your body needs or wants....every time I really think about how she must be feeling about all this, I just get all shaky and want to cry. I hate thinking that she is afraid. And the worst thing, and the thing that is hardest, is that there is nothing at all that I can say that reassures her. Sometimes I lie just to calm her down. Talk about guilt. "Yes, I talked to Uncle Frank last night, he'll be calling you later this week." "Yes, I checked on your cat three times today." "I just saw an aide coming down the hall. She'll be here any minute." Lying to my mom. I did it when I was a teenager. But now I'm doing it again.

I took a week of vacation this week, so I don't have as much computer access as I usually do. But I have so much I want to write. I'll try to get to the library tomorrow to tell you more. Thanks everyone, for all your thoughts and prayers, I'm so grateful.


Story of our Life said...

Hang in there darling. This is so hard, I know. My grandma went from slightly confused, to agitated, to mean, to very confused, to not eating and so on and son on.

It was very hard to deal with. The doctors have told my mom *she is part of an Alzhiemer's study* at the UW that it is very common for patients to remember the 'opposite' sex or at least be able to somewhat identify them.

My grandma was able to identify my grandpa or at least say "THAT is my husband" until the very end.

((((HUGS))) I know it isn't easy. Hang in there!!

Cupcake Mama said...

my heart is breaking for you Carol. Thinking of you.