I know, it's been a while since I've visited and posted here for the few of you who read. I think it has a lot to do with having nothing really new to report. However, that being said, I'll do the best I can to update.
Back in January or February, I asked the staff at the care center to please have her doctor (ask me if you want to know who) review mom's medications and to consider reducing her anti-psychotic medication, as more often than not mom was sleeping during the day. I also began complaining that Shirley was constantly constipated to the point that she was shouting in pain when placed on the toilet. Well, about 10 days ago, it was me who was shouting - at the head nurse. We were not very nice to one another in view of all the staff and residents, with me saying that we can put people on the moon and cause a 99 year old man to have an erection with a pill, why couldn't someone help my mom have a comfortable bowel movement? Not the words I used, but close. What I learned is that the doctor only visits once a week and then only the five neediest patients are addressed. I also learned that sometimes there are doctors who don't even SEE the patients, but only see their charts. Unacceptable. It was only after I told the staff that if I needed to, I would start making phonecalls and writing letters to the county commissioners that my concerns were finally addressed. Mom was started on an OTC med called Colace for the constipation and her anti-psych med was reduced by half. FINALLY!! She was also prescribed an appetite boosting medication - without consulting any of the rest of her family. While I'm grateful that she is now eating, pooping, and staying awake during my visits, I made it clear that family should be involved in decisions about what medications mom is being given.
WHEW - I wonder what happens to those poor people who have no one to speak for them? I guess I pretty much have the answer to that. Anyway, to give you a little more information about how Shirley is doing, I have to say that most of what she has to say is now reduced to nonsensicle babbling and that getting her up and walking has become a near impossibility. Her steps, so sure less than a year ago, are reduced to tiny forward shuffling movements, and then only with someone holding her up, sometimes two someones. She is incontinent most of the time and getting her in and out of a vehicle to take her places is going to cease soon unless one of us buys a wheelchair van. And of course since she doesn't know who she is visiting or where she is going, that's not a likely scenario. I see her every weekday to help her with lunch, as she is not able to hold and manuver her fork and spoon anymore. She has lost interest in chocolate, which was a daily requirement not so long ago. And here are the scary parts - she might stay on this plateau for another few years - and she will inevitably get worse. I know, as I see evidence all around her of what's coming.
All that being said, I am still blessed to be able to visit her every day. She may not know who I am, but she still likes me. I'm grateful to have her in my life and I'm also thankful to her friends and my family who have not abandoned her. It's a hard journey for us, but harder for Shirley, who knows that someting is very wrong, but is unable to put a name to it or to make it better. Hard to believe that the best we can do is to put our arms around her and make sure she knows that she is loved. For us, that's the easy part. Happy Easter everyone, be sure to say I Love You to lots of people today!
