Monday, May 18, 2015

Happy Birthday Mommy

I'm a week late in posting this, but last Monday (the 11th) was mom's birthday. I wanted to blog about it, but I've been pretty busy and to be honest, I didn't have anything too positive to say. It was a bit of a disappointment, to say the least. We all knew that mom would probably not remember her birthday; afterall, the last birthday she remembered was last summer and she didn't understand Mother's Day (or any other holiday). So you'd think we would be prepared for the disappointment. Nevertheless, we thought-whether she understood her birthday or not-we would take her out to the mall and let her shop to her heart's delight at Bath & Body Works (followed by dinner at her favorite place, Miguel's). Mom has been extremely antsy to get out of the house lately, so we figured she'd jump on the chance to go out to the mall.

We prepped her days in advance of our shopping plans with seemingly no comprehension on her part. Then, on Sunday, she surprised us all by saying that dad was taking her to the mall "tomorrow". We felt optimistic that she has grasped something we had said. But the optimism was short lived. I arrived at her house at 4:00 on her birthday to help my dad get her ready to go to the mall. To make a long and tiring story short, mom couldn't understand what we were trying to get her to do. I brought the kids in to sing Happy Birthday to her, but they may as well have sang it to the wall for the response they got from their grandma. I thought the tune might-just maybe-spark a memory in her. We showed her her bottles of body lotion, stating that we wanted to take her to get more. Nothing. Mom sat on her bed and fixated her attention to the clock, waiting for it to turn to 4:30 which would allow her to go and eat her pb&j sandwich for dinner. We tried for more than half an hour to get her out the door until we finally resigned our efforts. I could tell that my dad felt let down and our moods all shifted from hope and optimism to sadness and defeat.

If there is anything positive that we can say about mom's birthday, it is that we had a show of love and support from our friends and family. We had set up a fundraiser for The DEANA Foundation, honoring it's namesake's birthday, at-where else?-Miguel's Jr. Throughout the day, I received texts, pictures and posts from friends who were dining at Miguel's and wishing my mom a happy birthday. I can't tell you how much that means. Though my mom's memory fades, the memory of the person she once was will forever live on.

(The top picture was taken when I was delivering my first baby in 2005. The second picture was taken on Mother's Day; it's a blurry shot but that's all we can get these days).

Thursday, May 7, 2015

Losing Track Of Time

About a month ago, I wrote a post about another turn that mom had made in this disease. The problem was that mom had been waking up at night completely disoriented, thinking it was day time. Consequently, during the day she slept, thinking it was night. It was after some detective work in my online support groups and a home UTI test that showed up positive that we concluded mom's disruptive routine was the result of a UTI. I wrote my follow up post, stating that the doctor had ordered a UTI test at the lab and in the meantime had prescribed mom some antibiotics because it did sound as if she had a UTI. She started the antibiotics and soon after had gotten back into her regular routine. We were confused, however, when the lab results came back a few days later, negative for a UTI. The doctor figured she must've had some other sort of infection that the antibiotics cleared up, thus getting her back into her routine.

So here we are, a month later, finding ourselves in the same situation, yet again. For the past week mom has been very disoriented with time. She's been up showering at midnight, making peanut butter and jelly sandwiches at 4:00 in the morning and playing on her computer at random times of the day and night. She's been keeping my poor dad up at night. The interesting part is that she doesn't think it's night time during the day. She might think it's dinner time when it's breakfast, but I haven't noticed her (or heard about from my dad or other caregivers) getting in her jammies and sleeping during the day. It's almost as if this past week has been one very long, continuous day for her. Except that she will, on occasion, rinse her hair or put on make-up and do bits and pieces of her routine (only at random times of the day/night). I can't make sense of it because her entire routine is thrown off. It's hard to think that it could be another infection (though it's possible), but more likely just the turn we have been fearing-that mom has lost her sense of time.

Tuesday, May 5, 2015

Senior Citizens

Last week was my dad's birthday. My sister-in-law, Natalie, and I have been joking since last year that we were going to throw him a "Senior Citizen" party, since he was turning 55 and now eligible for the senior discounts. The funniest part about it is that my dad doesn't look (or act) like he's 55 in the least. We thought this was a pretty fun birthday party idea and dad could use a good laugh now and then. We moved forward with our party plans and last weekend, we threw dad his Senior Citizen Birthday Bash. Joe and Natalie drove in from Arizona and we invited our family and close friends to celebrate. The fun people dressed up like senior citizens and we ate good food, laughed, opened presents and played Bingo. It was a really fun night. Here are some fun pictures, just to bring a smile to your face. I laugh every time I look back at the photo of Natalie and me.

With every up there is a down. We had a fun time getting together and celebrating and it was good for dad to get out (we had a caregiver at home with mom). Joe doesn't say much, but I know this visit was especially hard for him because it was the first time that mom didn't know him. Even a few short months ago, at Christmas time, mom connected who her son was-even if she wasn't very social. This time, she couldn't figure out who he was and kept telling him that he needed to leave. Joe told me that on day 3, she finally figured out who he was, but continued to tell him that he needed to go home and shouldn't stay. Other than the usual things mom talks about (her lack of money and credit cards, not being able to drive, etc), Joe wasn't able to understand anything she said. Her speech is very fast and very slurred. If we can pick out a few clear words we are able to piece together what she is talking about. For those who don't see her as frequently (like Joe), it's harder to make sense of what she is talking about.

The next time Joe will be out will likely be in July. Seeing how it took mom 3 days to know who he was, I wonder if she will even connect the dots at all during their next visit :(