The Frustrations of Alzheimer's

I made it to Kansas City safe and sound and type to you from my father's office. We're going to take my Mom out to her favorite restaurant in a little bit. Yesterday night, I managed to get her to synagogue, which she not only enjoyed, but also ran into one of her old friends.

But, she's been driving me crazy. Its not just the disappointment of her not exactly remembering me or being able to comprehend much of what I say to her. Its not just that I have to really struggle to get her to do anything, i.e. go to the bathroom. Its not just that I had to shhhh my own mother a couple of times when we were at synagogue (because it was a silent pause moment and she started talking loudly). The hardest thing is that she snaps at me with this really angry tone that she never took with me before in her life.

I know all of this is just the disease, but it is completely stressful and heartbreaking to see your mother who is barely in her 60s struggling so much just to exist and still be quickly disappearing. I was here a couple of months ago, and the difference is striking. She several times got upset that her parents won't know where she is. (Both of her parents have died, and she says it as if she's some young kid.) This, I think, is a very bad sign. For my great aunt and my grandmother, it was a sign that we had hit the one year left mark.

My dad still doesn't look so hot. He has more color in his face, but his weight is still at 155 lbs. He used to weigh 200 lbs. There's no muscle on him, and since its so hot and he's wearing shorts, it is kinda creepy to look at him honestly. I don't know how he manages with all of this, but it is certainly taking its toll on his body. He looks much like his father did in his 80s. (But my dad is only in his 60s.)

I leave tomorrow, back home to teach again. I am kind of glad to not have to be here too much longer, although sad to not be with Mom. I haven't even made my plans yet for September, in part because I feel very non-committal right now about how long I'll come for. I want to help my parents, but it breaks my heart to see them. It especially stresses me out to be with my Mom.

But for tonight, I'll take some deep breaths and have a drink with dinner and try to savor the time that we have and at the very least give her some enjoyable moments.

Conversation with Mom: She's Clearly Getting Worse

I called Mom yesterday at the facility. She sounded really anxious. "Are you coming over?" she asked me. I told her that I was in school in California, so I can't come now, and she sounded really nervous, like she was freaking out and alone. I felt so horrible. "Your other daughter, Julie, is going to come over though tonight though; don't worry."

"Oh Julie's coming over? That's good. I better go then and wait for her." It was still early, probably hours before Julie would show up. Actually, I wasn't sure that she was planning on coming, but I didn't know what else to say. I tried to call my sister but she immediately put my niece on the phone and then someone came over to their house.

I called Julie today, and she said that when she got to Mom's, that Mom was waiting for her just right in front of the elevator. She told me that she'd call me tonight when she's at Mom's so that I can talk to her again.

They just called, and Julie put Mom on the phone. Me: "Hi Mom, it's [Karma]."

"Yes [Karma]."

"Is Julie their with your grandaughter?"

To Julie: "Is that...?" I hear Julie say yes, that's your granddaughter. Mom repeats "that's my granddaugther. She's here with my cousin Julie."

Me: (I know that this has been really bothering my sister) "That's your daughter, Julie. I'm your daughter, [Karma], and that's my sister Julie, your other daughter."

Mom: "I know. And you're in college."

Me: (feeling bad for correcting her and happy that she remembers that I'm in school) "and you probably had dinner with your husband tonight at Outback Steakhouse and had a steak, baked potato, and salad."

Mom: "Yes."

Me: "He's a creature of habit, huh?"

Mom: (little laugh) "Yes. The girl is playing with old phone that's not working. It is a...a...typewriter."

Me: "I remember when you would type things on a type writer when you were a secretary."

Mom: "And a bookkeeper. My husband has his office upstairs, and my office is downstairs. (This was true in their house, but Mom's office was moved upstairs too a few years ago. Of course, it isn't her office anymore.) I file his paperwork and take care of things....Julie's going to tuck me into bed tonight (sounding happy)."

Anyway, I can't even go on with the conversation; it just makes me cry. How does she remember some things and not others? These memories of hers are from a few years ago and then from being a little girll I thought that the memories disappeared more chronologically. It breaks my heart that she's disappearing more and more each day. She told Julie last week that she had to get home because her parents would be worried about her because they don't know where she is. I hate when she's upset or nervous or feeling alone or scared. I wish that I could be there with her.

I have to pull myself together and go out on my third date with the "nice guy". We're having dinner at a romantic Italian restaurant and then going to a movie about the Holocaust. I don't know honestly if I'll be able to sit through it, especially so late at night. I don't even want to go out at all, but I'm going to try to force myself to have a good time. I did have a nice morning with *A* and my dog - he had coffee with her while I worked out and then we had brunch. I also did a lot of work today. (Can you tell that I'm trying to be positive?)

Miracles: Dad Agrees to Namenda

Wow, am I amazed right now. I got a call from my sister who said that she wants to push Dad to get Mom on Namenda. She and I have been pushing this for awhile now, basically, we wrote Dad a letter together to push Dad to bring Mom to a neurologist. (This is about 10 years into the Alzheimer's Disease.) He begrudingly went and promised that he start her on medication, but after some time, just got really stubborn.

So my sister's idea was to conference call with Dad and just tell him that this is what we want and that we won't back down. He was refusing at first, but when it was clear that we wouldn't back down, he finally agreed to make an appointment for Mom on November 7 with the doctor who comes to Sunrise Assisted Living and ask him to prescribe Namenda.

My sister is going to go to the appointment to make sure that Dad follows through. I kind of don't actually believe that he'll follow through with it because I have that little faith in him. But, there is that possibility, which would be just so good for Mom.

Link

Conversation with Mom's Cousin

Mom's cousin is very concerned about things with Mom - why isn't she on medication, when will she finally get a medical examiniation, why did Dad cancel the occupational therapy. She kind of went off for a little while, which I completely understand: she's one of the nicest and most considerate people about everything but jeez. I really don't need to hear that. What can I do? Do you all know this about me - that my dad is somewhat neglectful of my mom in these ways?

She kinda pushed me like maybe I should go to the extreme of hiring and lawyer and suing Dad for custody of Mom. I just worry what he would do and that maybe he would abandon her, which would be horrible for her because she is completely dependent upon his visits. Plus, I know what taking that on would mean.

I told her that we definitely shouldn't push anything until Mom gets moved to the new facility in December. I suggested that at that point, we try to sit down with him as a group and negotiate with him, having a list of what we want. At that point, hopefully I'll be close to being done (at least with a good draft) of my thesis, and I can consider maybe going that route - if Dad is going to be like this, maybe there's no use trying to not push things with Dad and trying to salvage our relationship for the sake of Mom. Maybe the best thing to do for her would be to get custody, get her on medications and getting the care that she deserves.

What timing too - just as I am coming back to my PTSD symptoms, part of the reason that I have PTSD starts to bear its head - my father's abusiveness.

Mom Called

The woman that I hired to come in and help take care of Mom called me today and put Mom on the phone. She told me that she got the card that I sent her.

Me: I wanted to let you know that I'm thinking about you.

Mom: I'm thinking about you too.

Me: And I miss you.

Mom: I miss you too.

Mom tells me that the caretaker brought her dog, which she enjoys.
She was very sweet on the phone, and I could tell that she knew who she was talking to. She sounded happy, and even though she started told me a story that I know isn't completely true (because she wanted to talk to me but didn't remember her story), it was comforting.

Me: So how do you feel today?

Mom: Better now. (This means that she was anxious when she was alone, but now that the caretaker is there, she feels okay.)