Thinking about stuff......

Not so sure where my thoughts are with the health care system we have. Frustration is probably my number one enemy right now. Trying to figure things out, waiting for the doctors to decide what they are going to do, and then trying to figure out what my mother will agree to be involved with. One doctor says one thing, another says something else. Thinking it's time to take one day at a time and enjoy each day as it slowly happens.

Michael is doing all he can to do whatever he can. We went for our follow up about his injections for his tremors. The doctor is amazing there and has put us in again for an earlier appointment then the receptionist said was available. He has said straight out that the tremors will come back before the needles and that's already happening. I know it's upsetting him, and I would be lying if I said it didn't bother me too---my heart hurts for him when he is hurting. February can't come soon enough but like always we will wait and yup.....take one day at a time.

As a parent, child and mom I sometimes wish I could throw a temper tantrum. Don't you think it would be the ideal way to handle a problem???.....NOT, but it sure would make me feel better for a bit.

Anyway that's about it for now. Tomorrow is another day, and just like I've mentioned taking it slowly and with whatever is on our plates we will deal with as it comes. Each day is a new day, with new hurdles and new challenges. Each one will be taken on and dealt with, look out world, I won't have a temper tantrum just yet but well maybe one day and who knows where. I'll keep yah guessing....lol.

HaPpY NeW YeArS

Haven't been here for a bit. Life has really gotten in the way. Thought I would update and sort of let yah know where things have been........... remember that diagnoses of Alzheimer's that my mom was given a way back a bit ago????? Well I argued it and would refused to believe it.

After an MRI that showed a tumor, non cancerous, on my mother's brain, our new family doctor, who I must say suggested I write down all my concerns and ask lots of questions, made an appointment for my mother to see a neurosurgeon. Well, I did, and he answered. I wasn't there for the appointment, as it was scheduled when I was working, and probably because of how I opposed the diagnoses they really weren't wanting me there. Well, the neurosurgeon asks questions, reads the note I sent, completes a few memory tests, and comes to the conclusion that YUP, I was right. She does not have Alzheimer's, he comments that she is far to smart and her ability to keep on track is not of that that someone would demonstrate with the disease.

As my father says when I asked him how he was feeling..........first sad, then upset then sad again....you see it's not the first time the medical profession has botched up. I won't even go into the number of times, but truly it would make your head swim. I have very little faith, no respect and absolutely no want to have something ever attempted to be fixed again if it really ain't broken.

So where do we go from here??? Apparently my mother was on medication that was far to strong with the amount being far to much, that was changed after a fast visit to our new family doctor. Apparently there is concern for the damage the strokes she has had have done. However, can you imagine the day before Christmas Eve, the doctor called who made more than one wrong diagnoses and put them all on paper in a letter to my parents, to see if my mother would agree to being in the hospital for a few days to have a complete review of her medications, and her health. First off, how sad that she felt the need to call, especially her timing, and on the phone would not even mention that she was wrong but that the neurosurgeon's report makes some recommendations, but she would love to have my mother in again to reassess. Oh I should mention she is a specialist in one medical area and totally suggested that my mother does not fit into this category.
My thoughts, the medical field is totally a guessing game, no one knows which side is up. That doctors refuse to admit error, and hide behind reassessments, and that most doctors think they are "God like", and only they not the specialists know what they are doing.

How do I feel??? A lot like how my father feels with a whole lot of anger in there. Where do we go??? We aren't sure. What will we do, we don't know. My mother wants nothing to do with the doctor who was wrong, she wants nothing to do with her or her place of work. We will have to make some decisions. Who knows where they will take us. I am truly hoping that 2012 is a whole lot different than 2011. Here's to whatever awaits around the corner. Keep us in your thoughts, and please always asks lots of questions and if you don't agree, don't give in, the health of a loved one might be jeopardized if you do.

I learned today......

Early today I phoned my father to see if he needed to run any errands as I was heading over their way and would stop in if he was needing out of the house to do anything. As yesterday was Remembrance Day he was not able to get his banking done so today he took advantage of doing that and getting his hair cut. As usual of late my mom was laying in bed trying to catch her breath. Something she is out of lately quite quickly trying to do anything. Well we lay there we talked about all kinds of things. She is sure that there are many people working where she lives. That it is just not my father but many who do all the work about the "place". This place has been my parents home since long before I was born. As she talked, I interrupted which I do often no matter who is talking, it's just me and my bad habit, anyway, I took the opportunity to ask questions about what my mom actually does remember of her life. Sometimes things should be left alone, maybe then there wouldn't be upset and heartache on my part. Anyway, she was talking about the "man" that was there and left. That man being my father but her not remembering. Anyway, she talked and she said she knows people say he's her husband but she knows otherwise. So I asked, if he's your husband, does that mean I'm your daughter? and her reply was that of-well they tell me you are but I don't remember any of that part of my life. Did it hurt? Yes. Why did I ask? I'm not really sure, maybe I just thoughts she might say of course silly you are, but her response hurt, and later when I was alone it brought tears to my eyes. Imagine not knowing much of your life, not remembering your family, not understanding a huge part of your life. But when we talked she remembered her mother, her aunt and her grandmother, and she talked of them and how they played different roles in her life. I just don't get it, but I did learn that if I don't ask questions then I won't be hurt. Is that a good thing????

Something I just can't get my mind around.....

It's funny how the brain works, one day you seem to understand what's going on around you and the next the world is a huge scary place.

Working in the profession I do, child care, I often feel so for the little ones brought into a place that is unknown to them, dropped off in some strangers arms and left for a day without an understanding of what really is going on around them.

Then along comes Alzheimer's disease into my life. Sort of like that first day of child care, there is that person you've known all your life, you call them mom and they look at you like you don't belong there. They don't know who you are, and they feel so lost and alone. My mom has no idea of so much of what has gone on in her life. She asks my father often to call her husband, she asks me to come into the back room and talk to her about the "man" in the house. She has no idea who he is and at night she is often afraid in bed because she has no idea who is laying next to her.

As I write this, I wonder if at some point my life will be the same, if I too will have this dreadful disease. It's strange how life can turn and twist and you really only be there doing whatever it is you are to do. We think we are in control of everything, that we know what we will do each day, that we plan and do what we feel is needing to be done. I laugh when I think of this, I don't plan things so much any more. I don't want to be disappointed or disappoint anyone. Planning use to give me something to look forward to, now if things don't happen like I think they should then my upset is great. So I take each day as it comes, look for the good in it and try to understand what is happening all about me.

My mother is a very intelligent woman, it sometimes terrifies me to know she feels so lost, so unaware of who's around her, so fearful. Just like that child dropped off in that place I call work, but to them is just a big building that mommy or daddy leave them in. How fearful it must be for them. Then I sit and think of how fearful it must be for my mom, her house is unrecognized, her husband isn't the person she thinks it should be, and I her daughter never existed. What must she think when she looks at my tears and see tears over what she doesn't remember. As I write this my heart is heavy and my tears are great. I miss my mom just like that child must miss their's when they are left at that place where someone is caring for them. I tell that little one their mom or dad will be back later, I just wish my mom would be back.

haven't posted for a bit..............

not so sure why. Sometimes I think if I ignore life it will just go away.

I see the look in my mothers eyes. The confusion during conversations is difficult to figure out, she deserves an "A" for effort in not trying to upset anyone as she really does not know who we are, and does not let on, at times we are able to figure out her confusion by comments she makes, and at those times it brings tears to my eyes. My father and I have had several conversations, he is a hero in my books for all he is doing. I've always known how lucky I am to have him as my father but even today I learn so much from him and I am so proud of who he is and all he does. I do cry more than I think I ever have, and I know that crying only causes headaches, but it does help sometimes and if that's what I have to do to make myself feel a wee bit better than I'll shed tears when I have to and laugh when I can. Laughter really is the best medicine.

Taylor came home with a note yesterday, and right now my hubby is sitting at the computer emailing her teacher a letter. Her concerns are of Taylor's fidgeting in class. Wow, with all Taylor has going on in her life, I'd pleased if I were a teacher and this is how she is using her time to relieve her stresses. Often I learn from Taylor, however one thing I can't understand is how a teacher with knowledge of a child's issues in her life---and there are many, can actually focus on fidgeting and it's distraction for the class. When I hear all else that is going on in the class it just causes me to shake my head.
This is just one more thing that is put on that plate that is already piled high. Will we deal with it, yes, do we want assistance from the teacher, yes. Do we think Taylor needs to be disciplined by the teacher, NO, but that's not for us to say, it's her environment and all we can do it hope that Taylor comes to some sort of way of coping that fits into the teacher's little box of allowment-is that a word??? so that she is not disciplined again, and that one day soon she may have that desk back to use. Yup the teacher took her desk and turned it back around so that there is not the opportunity to put things into it. That is a priviledge and has to be earned. Taylor earned her desks once, but had it taken away when she wasn't sitting still, go figure.

It's a total walk in the dark

never knowing who will be recognized, who will not be known and who will be the one to make my mom feel comforted is like taking a walk in the total dark and not knowing where you will end up or where you've been, you'll just know when you get there that it's suppose to be where you are. Does it make sense???? Not to me either. I look at pictures I've taken of my mom with Taylor or my dad, and in her eyes I see fear. Fear of not knowing who she is with, fear of not understanding what is going on about her. It's hard to explain, she puts on a real good front, she will remember my name when someone says it, she'll know who my father is when I call him dad, but does she really? My heart aches for her, my thoughts are always about how she is doing, and how her days are. Taking each day for what it's giving us is how we have to live life, but it really is like walking in the dark.... you know that really scared feeling you get, not seeing, not being able to get your barrings, just walking in almost total blindness, maybe every now and then touching that familiar object and thinking, I'm ok, I'll be alright. Is that what a person with Alzheimer's disease has go through their mind? Or are their days full of fear of the unknown..... When we talk my mom talks about not knowing or remembering parts of her life, or times of her life....she does not remember my father, she does not know who I am and she sometimes calls Taylor, Kim. She does seem to know Michael, he is her one constant, the person who can comfort her, the person who can make her laugh, and that's ok. At least we know she has someone that she recognizes, who knows why she doesn't remember us, but such is the way things are now. Each day is a new experience. I'll just keep taking that walk in the dark, because one day the light will go on and she will remember the one's she forgotten and if that day never happens then it's the memories we have of the past that we hold on to. Right???

YesTerDay....

wasn't a good day. Today I set goals I wanted to achieve and guess what---everything I wanted to do got done!!! Not so sure if I've mentioned lately all that is on my plate--it actually is alot and I've come to realize that so far I've managed it all well. Not so sure how anyone else would manage, but I am wondering. Guess you could say, every now and then I have a down day, yesterday was really one of the first that I actually sat and wrote how down I really felt. The today I thought I'd better post what's on my plate so that people know I'm really not a Debbie Downer.

So where do I begin, well here goes.....
2009 hubby in serious auto accident, sustained head injury creating memory and cognitive issues as well as injury to spine

2009 daughter diagnosed Type 1 Diabetic - then one year later told her was not and to stop administering insulin--oh did I mention she was only nine at the time-there are still issues with her blood sugars and we are still no wiser as to what the matter is
2010 my mom was diagnosed with Alzheimer's, varied Dementia, and after several falls which the family doctor did nothing about, several injuries which impede activity

2011 myself three surgeries, one to fix the first two that were not done properly, and that further complications resulted from lack of doctors taking the time to do their jobs right

2011 daughter fell down stairs---held onto the rail, didn't let go and has torn all the muscles about and on the rotor cuff, surgery possible in the next few days/week, oh and she's now ten

add to that the stress of not working daily, the issues of common cold, flu and other nasty things that happen once school starts and well, now you totally see where I am coming from. There's a whole lot more thrown in there that is needing to be dealt with daily but I won't get into all the nittygritty, however yestersday was a bad day---today is better :)

All I need to remember is I do have friends, I have a wonderful husband, and my daughter is fantastic. These are the positive things that make my life good, and I am very thankful for.