Can't Catch a Break

Just got home from the Neuro-Optometrists office. Mom's vision has declined significantly since her last visit. Unfortunately anyone who spends any amount of time with her knows this. She relies on touch often to find the remote, the handles on the walker, and just about everything.  We had planned to ask about the irritation in her eyes but the doctor beat us to it. She noticed it as soon as she walked in the room. She stated that PSP patients often blink less often, and also have a tendency to sleep with their eyes partially open. This causes dryness and irritation. After further testing, the doctor also discovered mom has an infection in her corneas, likely brought on from the blinking condition. So we now have lubrication drops and antibiotic drops to add to the list of medicines mom is already on.

Not Ready

Mom had an appointment with the digestive specialists today. They reviewed reports from the x-ray videos and the SLP's. The reports describe the issues with her swallowing and that she is currently not getting enough nutrition or hydration. The doctor informs Mom that he is scheduling her in 30 days to install a feeding tube into her stomach. She immediately becomes almost hysterical. I instantly interrupt the doctor and inform him that Mom does not want a feeding tube, and that's why she is so upset. He briefly starts to talk about mom's neurologist evaluating her to determine if shes competent enough to make decisions about herself. Again, trying not to get angry, I inform him that an evaluation is not needed. Mom is the ONLY one that can and should make this decision, and she knows exactly what the outcome of her decision entails. I also shared with him that before her symptoms were this bad she created a health care directive that clearly states she does want any form of artificial nutrition. He gave us some more information and told mom to think about what she wants to do and call if she wants to schedule the procedure.

Let me tell you, the car ride home was the longest. I've never been so lost for words. How do you comfort someone you love when there is nothing but bad or worse? What do you say when they ask you for advise on what to do? Where do you draw the line between holding on for as long as possible, while they suffer and continue to lose quality of life?

Mom and I talked until it was time for bed. Shes not 100% sure what she wants to do, but she expressed to me how very tired she is of fighting this damn disease.

Another Fall

Over the last few days, Mom has gotten braver and braver. I ask her to call me if she needs anything, and she tells me she will. She waits til I walk out, and up she goes. Well tonight I leave long enough to run out to the garage, and as soon as I do she gets up to open her window. While trying to open  it she falls backwards. The walker went flying one way and Mom the other. She had taken her help pendant off her neck and couldn't get to it. I walked in right after she fell, and immediately started to look her over. Mom says to me "I'm fine and I don't need checked". I looked her over anyway, and told her she's luck to not be injured and that I should make her go to the hospital just in case. This statement did not go over well, and Mom, very excited, told me she was not going to the hospital. Luckily, she does seem to be fine. I do know that this scared her quit a bit. She told me shes not getting up without calling again. I hate to tell this poor woman who has been so independent her entire life, that she has to call someone to basically do anything, but its the only way to keep her safe. PSP SUCKS!!!

Discharged from Home Care

The head therapist came to the house today. She gave mom a few exercised to do and took some notes. She asked mom a number of questions too. She decided that there was nothing more that they could do to help and discharged mom. I have mixed feelings about this but, we've been though this enough that I knew it was coming.

If we want to in a few months, we can have the doctor reorder therapy and start up again. I honestly don't think they help all that much. I think she gets the most benefit out of just having something to do, and the exercise is always good.

In the meantime, I have a set of exercises and activities that she and I will be doing in place of theirs.

Another Scare, but OK

Well, its 4:30AM, and moms got me a nervous wreck. For whatever reason I woke up at almost 4AM, I think I may have heard mom on the monitor. I look over at the little screen on the nightstand, and I see moms legs hanging off the side of the bed. From what I can tell from the little night vision camera, she is trying to reach her glasses. I'm thinking to myself "Shes going to get her glasses and look at the clock and go back to bed". She continues to fumble around for a few minutes, and I'm hoping if she needs something she'll press the pager button. No, she shoots up to her feet, swaying, and reaching for her walker, that I know is a good 5 feet away from the bed because that's where I put it when I helped her get in bed. So the second I see her feet hit the ground I am up, sprinting down the hall, hurtling the laundry basket like I'm in the Olympics. I get in moms room just as shes leaning forward toward her walker. I let out a sigh of relief. I thought for sure I would be too late and we would have another fall. She tells me shes going to the bathroom, and doesn't know why she didn't call. As much as she was swaying and stumbling, I'm certain she would have fallen. I put her back to bed, and now I'm going to attempt to go back to sleep.