really long week

I really havnt talked about myself much. I am 44 yrs old. I have 5 children. My oldest is 25 and my youngest is 11. So all of my kids have had the opprotunity to know their grandmother before the alz. really took a hold of her. The two youngest not as much, but i have lots of memories of her with them and i will always cherish those. I like to be busy. I am more content when im busy and tend to stay more focused. There is that fine line between being busy, and complete craziness. I seem to walk that line a little too often sometimes. But i think until all the kids are raised that probably isnt gonna change to much. I was blessed with great health. I do not get sick much. I do not have multiple ailments, or get sick much. I realize i am fairly young and this could change, but for the most part i am blessed with my health. I was not however blessed with a healthy spine. I have a degenerative disease that will continue to cause my discs to breakdown and herniate, and collapse. I have had 1 back surgery to repair some damage, and to help manage the nerve pain it was causing. I have also had 2 discs removed from my neck and had them replaced with doner bone, screws and plates. Not fun. I do deal with chronic pain, on a daily basis. This is hard. As a caregiver it is hard because my children are old enough that if i needed to sty down for a day, i could. As a care giver life goes on. Grama still needs to be fed, bathed, and taken care of. That is really hard some days. I for the most part have to keep puttering most of the day, or i cant stand the pain. I have to take pain meds which i hate but i realized along time ago as my situation continued to worsen that if i am to have any life at all i have to address the pain. Pain is a funny thing. It really messes with your mind. When you deal with it daily, it is almost like it becomes another family member. Its like there is myself, my husband and my pain in our relationship. It sucks. I dont know any other way to put it. I hate it. I have slowly watched my life shrink as far as what i can do. I have given up alot. But what i choose to focus on is what i am still able to do. and that is alot. Dont get me wrong i have terrible bouts of anger that i have to face every day with such physical pain. But i cant change it so i have to figure a way to live a life that makes me happy with it. Today is a bad day pain wise. I know i try to accomplish too much, but i also know when i quit trying i probably give up. I try not to think about what the future hold for me in that area because i know at some point i will be facing more surgery.

couple hard days

Bot do lots of days really stand out in my memories over the years. Days that were just really difficult to be a caregiver. Days when i needed to just worry about me. Days when i had needed that simply have to be set aside to continue on with the daily routine of caring for grama. Several years back i lost a dear friend to suicide. Hands down this was one of the most difficult things i had ever faced. I had never been thru something like that. I had known people whe committed suicide, but never a dear friend. I was wiped out emotionally. I absolutely couldnt function. I cried for days. I think for me because it happened the way it happened i had a really hard time moving past it. Well Grama still needed to be cared for thru all of this. My mom took her for an afternoon. I could barely speak when she got home. The sadness was just overwhelming. Grama knew and very much loved my friend, but was just to far into the disease at that point to share it with her. She knew something was wrong, and kept asking if i was alright. It brought on a whole new realm of sadness to me that i couldnt share this with her. We couldnt talk it out, or she couldnt help me thru it. I was like a shell of a person for days. I remember another time when i had surgery on my wrist. Just a minor one carpal tunnel. Well i arranged for grama to stay somewhere for a few days. It didnt work out. She was home that evening. The next day she had an accident, bathroom wise , in her bedroom. I remember welling with frustration over just feeling so alone. Changing her sheets with one hand, showering her with one hand. I felt selfish for not wanting to deal with her. Caring for someone who has all these special needs is a real mind trip at times. The emotional rollercoaster you ride never ends. It is so unlike dealing with any other person. Their mentality is that of a child. Their reasoning ability is basically non-existent. But yet there is this constant innappropriate behavior, mean-spirited remarks, and endless devious behavior you are dealing with. our ability to swallow most of it, ignore it or try to deal with it must be huge. You simply have to ignore a great deal of it. Arguing with someone who has alz. is very similar to arguing with a sign post. You are not going to get the person to understand any sort of reason. They loose that ability. You really have to keep it simple. For instance if grama tells me im full of bullshit, i tell please do not talk to me that way. She says why, or i will talk to you however i want. Then my reply is always, i do not cuss at you or use that tone of voice with you so please dont use it with me. Now dont get me wrong , her immediate response 99 percent of the time then is oh bullshit. But 1 percent of the time she will say ok im sorry. But sometimes if grama gets that she has upset me she will back off a little. Then there are always the days i could probably make a little money off of her by throwing her in the ring with a big name fighter. She could kick anyones but. She wakes up ready to go at it , and goes to bed the same way. Unfortunately we had a couple of days like that this week. She would not take her pills. Each session was a battle of who is gonna win this one. Fortunately gabe, my 16 yr old is very good with his grama and can do pill battle for me if i need him to. There are times i wonder how much longer we will be able to get her to take them. There are a few rules about the pills. You hand her one at a time. Never more than one. You watch her swallow it. You do not walk across the room to pick something else, you do not answer your phone, you watch her swallow it. You do this until each pill is gone. And when you give her the last one and she says its down you hang out for a minute to make sure she doesnt spit it out. Grama could have her own traveling magic show. She can dispose of her pills in more sneaky ways than you could ever imagine. To this day i dont know how she does it but i find them in many many unlikley places. Then there is also the more obvious way of disposing of it when she yells im not taking this and then spits it across the room with her milk. On these occassions i typically remove myself from whatever room we are in and immediately count to 100. So i will end today on a funny note. When we were going to her doctors apt. the other day we drove past the liquor store. She read the word liquor out loud. Then she said i bet thats where they go to get their booze. Funny hearing the word booze out of my 91 yr old gramas mouth. So i asked her who they was. She said you know all the alcholys.

Looooong day

What a day. I opened at the coffee shop today which is my normal shift. It requires me to get up at 4 am. So after the shift it was time to prepare for the doctors apt. Now i basically do not share this info with gma. I dont tell her about apts anymore. It gets ugly real fast, and usually a total refusal to cooperate. She used to dive in bed and claim she was sick, and refuse to get up. We did make it to the apt. and besides yelling at the nurse who took her blood pressure because the blood pressure cuff is to tight, and besides calling the doctor a bastard, it went pretty well. She told a couple tall tales,and her doc listened attentively like always. So after the doc we were off to walmart. Walmart is like my most unfavorite place in the whole world. But as i said before grama loves walmart. She behaved prettywell. She says beep beep when people get in our way but i chose to ignore it today. Once we got home she turned on me. It got pretty ugly. We had words a couple of times but i convinced her pretty early on that it was time to get settled in bed. It was cloudy so it was kind of dark. I have to use whatever i can to my advantage.

more on grama

well needless to say there have been many funny things that have happened to me with my grama over the years. Most have to do with things that come out of her mouth. Grama has the reasoning ability and the social awareness of roughly a 4 year old. She says what comes to mind and she says it however and in whatever volume she chooses. There are times that i can head certain situations off if im on my toes. For instance if i head down an aisle at walmart and i see a very large person i turn my little train around and we head down another aisle quickly! Peoples size, choice of clothing, or even their color are all good reasons to head the other way. Somedays i just dont have the energy to aisle hop at walmart the store is as big as a country to begin with and i push gramas wheelchair and pull the cart behind me. So sometimes i just let the chips fall where ever they happen to fall. On those days i play the deaf caretaker. Not only do i pretend im deaf when grama is repeatedly trying to get my attention to point out whatever she has discovered, but i also play deaf when the poor recieient of the horrible comment hears then looks my way waiting for me to acknowledge that i heard. Its just easier. Ihave on many occasions had to really get stern with grama because she wont let something drop, and continues commenting. But this is another trycky situation, depending on her mood at that moment, choosing to go head to head with her is not always the smartest choice. You are basically choosing to do battle in a public place with someone who not only doesnt care what she says but she doesnt care who hears it. So it can turn out real ugly. I have had to threaten to take her to the car which of course i cant do and that usually quiets her.She doesnt want to miss ANYTHING! Then she pouts for a bit. But walmart has an endless supply of one of gramas favorite things in the world, children. She loves kids. And she speaks to each and every one we go by. She always loved kids. The checkout can be a little tricky. Just depends on the mood. She sees the bathroom signs and is very determined that she is going to head over there. for the most part if i open her snicker, her favorite candy bar in the world, then she is content.

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.