Is there such a thing as fair? Is it more than just a word. I am the champion of the underdog, the one who wants everyone to be happy, who tries to fix it for everyone else. I've run across several things I can't fix this year. The biggest is my mother's Alzheimer's. I want everyone to be okay and feel normal, especially Mom. We spend a lot of time walking on egg shells, trying not to upset her or for the grandkids to notice that something's wrong. I am the one who wants to mother everyone and find a way to take away all of their pain. I may not be able to fix my own pain and suffering due to disease, but I want to help others fix theirs.Right now, I'm vacilating between the stages of grief and so is Mom, and according to doctors that's normal. I so desperately want to help her and Dad, but I end up feeling like I'm running in circles. Another thing I've discovered in my research to make things easier is that all medical supplies are ridiculously expensive. I'm trying to find a locked medicine dispenser for Mom's safety and the safety of her grandchildren. I haven't seen one for less than $100. I also have to lock up Dad's meds and throw out anything that is old. This is taking me longer than it should. Dad is very territorial about his "stuff"
Another problem is the GPS and driving. Mom gets lost a lot, but we're not sure if there's a GPS out there for her. The last idea was a voice activated one that makes everything hands-free, but there's an issue with all of this. What if she gets in an accident and gets sued? They could come after all of us for knowing she had Alzheimer's and letting her drive anyway. My argument against this was that she past a driving test they put her through at the Rehab facility. I just don't want to take away her independence and her freedom. She's always been one to get out there and go do something. Always had a project, something that needed to be done. It's hard telling someone like that to stay home and be dependent upon others to take her places. When Dad gets out of the house to do his errands, she wants to go and he wants to be by himself. I can see both sides and my heart breaks for both of them.
Unfortunately, I know all too well what Mom's going thru because I've been dealing with MS and Fibro for over 15 years now. I've dealt with the colleagues that thought I was stupid. And, unfortunately, I bought into a lot of the nonsense. I told Todd it's like sitting on sidelines, watching the parade go by. There's a person inside that's always been sharp and put together, not what you see today. It's as if all of the hard work you put into your life has just suddenly been erased. I know what it's like to misunderstand or just completely not understand something, but you don't dare ask for help. I, like Mom, don't want to be a burden to anyone and I don't want to feel like a second class citizen with nothing to contribute to this world.
I think family counseling is going to be our first big step. That helps put someone else in charge besides me, or my sister, or my dad. Unfortunately, the caregiver is the sounding board and the one who often gets screamed at, when all they're trying to do is help. Plus, in our family, if a doctor said to do something, it's golden. We listen to them.
Right now, I'm up and and I'm down, running around in circles trying to be of help. It's frustrating to explain something and think she's got it, only to have her ask the same questions over and over and prove that she doesn't understand. The good thing is that I have a little experience with this from being a parent and a teacher. Kids have to be told the same things over and over again. I've just to remember to keep everything slow and easy. The telephone is not my best friend right now when it comes to Mom. She gets distracted by anything going on around her and she doesn't here what I'm saying. She pretends to, but I know the truth. She gets more confused by conversations we've had on the phone than those in person. Another thing I'm looking for is an large clock that will show the date and day of the week, along with the time in a font large enough for her to see across the room. She mixes up her days quite a bit and that's often caused problems.
I have learned a lot in a short amount of time. I am angry, frustrated, sad, scared, and overwhelmed. Meredith and I got really honest with her last week about how we feel, but I'm not sure if it helped or hurt. I don't like losing her bits and pieces at a time. She looks like the same woman and often sounds like her, but it's not true. I don't know how long I have left with "this version" of Mom and it scares me. I want to get her to put some things down on paper for the kids, for us, and for Dad, while she's semi-lucid and can remember the past. Short term memory isn't good with her, but long term is a little better in some areas.I already miss just being able to call her up and talk about my day or the kids' activities. One of the biggest days I dread is the day when she no longer recognizes me.
