Well here goes. I have said for years that i needed to do this. I have several journals that i have filled over the years. People love to hear all of my grama stories though and it also provides me an outlet to vent. Many days end in frustration when you care for somone with alz. I am not spelling that word out every time and i also am not going to concern myself to much with grammar and punctuation. The first stage of gramas disease was in many ways the worst so far. She was paranoid, combative, very very much in denial. She fought the diagnosis tooth and nail. She lied alot to cove her tracks when she made boo boos. It was ugly. I didnt like her at all, and im pretty sure she didnt like me either. I questioned constantly whether or not i could continue to do it. Grama became a master manipulater. When i had friends over she refused to allow me time with them. I am sure you wonder how she accomplished that, she simply planted herself wherever we were and then proceeded to take over the conversation. She also became very good at heaping enormous amounts of guilt on me. Guilt if i didn,t take her with each time i left the house. She would actually get her coat on and get her purse and sit on a chair next to the door and say to me if you leave this house i AM going with you. I am just laying the groundwork for you so you get a feel for what the earlier years with this disease were like. On a daily basis someone wa accused of stealing from her. At times it was an item that never existed. Her perception of things was very warped. She came home from church many times angry because someone had beenRUDE to her. How things were said and how her brain twisted it were very different. This stage became quite interesting as well. A friend of hers would call and ask her to pray because they were going in for a simple test or medical procedure and she would tell me they had a tumor and it didnt look good. You get the idea. Well fast forward thru lots of changes and stages over the years lots of different meds, different doctors, different side effects from the different meds. and here we are. I fought her doctor for quite awhile about starting her on aricept, a med for alz. He was an older man and pretty much any concern i brought up that had anything to do with memory or confusion or odd behavior he dismissed as ageing. Well he retired WHEW!!!!!!!!! So when we got grama with a new doc he listened to me. He said you know her, you live with her i think you have a good read on where she is at. Long story short she started on aricept fairly early onto her disease. Now whether or not she is the poster child for how well that drug can work who knows. Grama has progressed at a snails pace compared to most people that have this disease. But she also lives in a very non-typical environment than most people with this disease to. She lives in a very busy household. With children around all the time. She has been drug to every type of sporting event known to man. I have always wondered how much of a role this has had on the progression of her disease. So a littlehistory on my relationship with grama. My grandpa and grama were always a major part of my life. I grew up mostly with a single mother.They really helped fill the gap for me. We had a very close relationship. I always spent alot of time with them or at their house. We spent summers with them sometimes. I think there was a bond early on for me. My grandparents did not spoil us. They were not wealthy, they didnt lavish us with material things. They were both really practical as far as what a kid needs. They spent time with us. Unlimited amounts of time. They played games endlessly with us. Not just us whatever friends we had over as well. They took us swimming. They took us to the park. I think their time was just the most precious gift they could have given and they gave it really unselfishly. WE were not allowed to back talk. We were also not allowed to argue with them, no meant no. They were fair but firm. When i say we i am referring to my sister lora who is 2 years older than me. There have been alot of times throughout this disease with my grama that i have wondered if i had the strength mentally or emotionally to continue. I know that if i had had any sort of illness no matter how long or difficult it would have been my grama would have never said wow this is really just more than i can handle angelia is going to have to go live somewhere else, i just cant do it anymore. I know she would have taken care of me until she wasnt able. Now im not being unrealistic obviously the situation is very different. I am raising a family in the midst of all of this. Isabel was 1 yr. old when we started this journey. I know enough about this disease that i know there are facets of it that if she were experiencing some of them i wouldnt be able to physically care for her. Its funny how other people view what im doing sometimes or things they say to me. I see grama as simply as part of my family, part of my day, part of my responsibilities. I think others sometimes see her as this extra, thing not really part of the family. I dont sit around and worry about a year from now. If i dont live in the present i cant function. i dont know what this disease holds for us tomorrow. Grama could wake up tomorrow and no longer be able to speak. I thought of that yesterday. I took her on a drive around the lake and she was having a really hard time getting the words she wanted out. I know there will be a day when she wont be able to. That will suck. I dont like to think about it but i cant dwell on it. Little by little i have said goodbye to pieces of my grama. Memories that we can no longer reminise about. Funny stories that we cant talk about anymore. I can but she doesnt remember them it isnt a two sided conversation. I cant go to her for advice anymore. I used to ask her parenting questions, or questions about her and grampas relationship. So this disease is a long process of change, and of loss. But the loss happens a little bit at a time. I just try to take one day as it happens. Believe me when i say there are days that if i thought i was gonna have another one just like it the next day i would probably check myself into the nuthouse for a vacation.So that is a little history to help you understand where and how and why i got to where i am now. Grama was a very proper lady. She was always well put together. She took pride in her appearance. She always watched her weight, hair always looked nice, and always well mannered. She and grampa always went to a baptist church that i remember. Sunday morning, sunday evening and wednesday evening. Grama always held roles of leadership of one form of another. She enjoyed leading bible studies, teaching bible school, and loved planning things. She was good at organizing. She worked in hospitals. She did reception type work and also medical billing. But younger in her life she still shaares these stories occasionally she worked in cotton patches. She of course hated this work but remembers that for her families well being it was very necessary. Grampa was injuerd badly in a sawmill accident so he was forced to retire quite early. Im not to sure this was to great for thier relationship but i di know he was available to us alot and i loved that. Grama and Grampa had a close network of friends that they socialized with and stayed close with all throughout the years. I have lots of great memories of picnics, outings, trips to the state fair. We were always included my sister and I. One thing that has been difficult is watching how hard this disease has been on gramas dear friends. Phone conversations got fewer and fewer and visits just stopped. Grama no longer knows who they are and any conversation is simply just her talking about whatever she happns to be looking out the window at. I know that this has been so hard on her dear friends. Grama was always a source of comfort for them. Just like any longtime friends do they leaned on each other in hard times. I know they miss her and the friendship they used to have. We go through alot of cycles with this disease. Cycles where we dont sleep. Now for the record when i say dont sleep that is exactly what i mean. As the doctor has explained to me this disease just overides any normal signals that your brain might recognize as fatigue. And pretty much transforms you into a cross between the energizer bunny and judge judy on crack. Because grama goes days sometimes without any real restoritive sleep she gets veryCRANKY!!!!!!!!!!!!!!!!!!!!!!!!! These are not fun cycles. Then of course we move onto what i call the crash. Eventually her poor little 91 almost 92 year old body gives out and she wants to sleep for a couple weeks to make up for it. I would be lying if i didnt admit to a little anger over the fact that she is allowed to crash and im not. Life goes on. But lets just say im always greatful when the crash arrives! We have tried every sleep med known to modern science and until we are ready for the big boys the real tranquilizers we will just keep doing what we are doing. When you visit a nursing home and you see alot of residents sitting and staring into space some of them , not all are verymedicated. They cannot manage the number of people they have there and not medicate to help control behavior. They are not going to assign a special cna to stay up all night with someone when they are having a cant sleep cycle. And they are also not going to deal with their very difficult behavior that follows from lack of sleep. They are going to medicate them. Im just not ready to go there yet.