Ramblings at 3 am

Another three in the morning, my heart, and head are having a battle. I know he needs the risperidone to stop these episodes; a term we use to describe combative behavior and hallucinations where he lays for hours singing to people that don’t exist instead of talking to them. Does that make me sound crazy? I refer to them as beings.  I am not sure how much longer I can do these long hours by myself.  My daughter helps during the day so I can grab an hour nap, but I fall deeply into a sleep that it becomes difficult to wake me.

I know his Aricept has come to its useful end, now it is just a pill in a cup. He has been blackballed out of nursing homes, which is not something I would consider however the respite care would have been nice right about now. It would have to be someone trained in Alzheimer's or I am afraid I would come home to him dirty and sitting in his chair alone. He fits no useful stage or guide. Simply end stage which could last a few months to a few years. He has been in this stage for over three years now. Progressively worse the past six months. He doesn’t know me, the house, nor does he believe he has grandchildren. Inappropriate behavior is making it difficult to take him to doctor appointments.

I have been researching this disease for years. I started working with the AHEAD program taking tests and answering questions for a year or more to determine my probability of having Alzheimer’s at any stage. We all start out in the first stage of Dementia/Alzheimer’s which are no real symptoms at all.  When you are finished, they give you no indication on your last report or tests. I received a letter in the mail to join a drug testing program, I guess I received my answer. I am very diligent to keep my mind active and use several programs such as luminosity, puzzle games, constant organization to keep my mind alert. This – don’t sign up for this program until the stressors of the disease you are dealing with are gone. Some of the tests require complete silence, focus without interruptions. I could not do this properly. My mind was on what he was doing while only a few feet from me. So, the validity while being a caregiver is very skeptical to say the least. Taking the tests at 3 am with little sleep is also a contributing factor of an epic fail. 

Playing Catch Up

By now you already know the stages of ALZ, and how your loved one in teetering on one stage to the next.  Today I have had to accept the fact that ALZ medications attempt to stablize, but they do not stop progression.  The progression starts to become a bit much with an end in sight, but not one you would choose for them, nor for yourself.

Today I am just relating stories as it have become emotional for me. Let me set the scene. I am on the couch across from my father in his over stuffed leather chair while he is watching a show on TV. To me it is just background noise, his hearing becoming worse it is all the way to the hilt. Something funny came across even I smiled however I watched my father smile and attempt to clap his hands. I stared at him for several minutes as this is something he has done his entire life when laughing, don't ask why it just is what it is. He kept looking at his hands attempting to move them, but he could not figure out how to do it. Suddenly his focus was on his hands and not the TV, tears welled in my eyes although none fell I am stronger than that.

I got his attention,  "That was funny as all get out wasn't it daddy?" I began to slowly clap my hands so he could watch me. I noticed he began to mimic what I was doing his clap went from hesitant to a hearty laugh and again he was clapping hard yet tears were streaming down his face. We did not talk about it we moved on.  This is one moment in one day as I watch his fine motor skills deteriorate.

ALZ is an evil, stealing all your moments that you will never have leaving destruction in its wake.

Another Endless Night

Sit back for a moment while I go get me some more coffee. I have been awake since 11 pm last night after coming off of a two day insomnia. Daughter is sick and so is her fiance, so it was my turn to pick up the slack. Hold on....okay here we go. Today I am sick, not sure if it is from running for two days, or I have managed to pick up their bug.

Dad has been in rare form, God I love him, but this is like having a child all over again. They don't tell you that, pretty much no one mentions that BIG fact. He throws tantrums out of the blue, forgets who you are and decides it is OK to talk to you however he chooses.

Here are some hints on how to handle that situation.

1. Disengage from the situation
2. Do not take it personal
3. It is the disease not them
4. Find him/her/yourself something else to do
5. It will be fleeting just give it fifteen minutes and it will pass

He is certain that Christmas is next week and I am too lazy to go buy some presents. I keep telling him that his birthday has not come yet, that is mid summer and when the leaves fall from the trees that is when I go shopping for the holiday. This is not going well insert giggle here.

I was on the phone from 2am to 3am trying to get him back to bed so he can get up this morning and take his medications. Once he is off schedule his symptoms become worse. The hopes that this will get better are gone, the medications do not seem like they are helping any longer. Although using the new depends pull up diapers are much more friendly for him.

He has many days he doesn't realize that Mom is not coming back. I have attempted to do her room several time, but even dusting sends him into a tizzy. I talked to his doctor and he told me to leave it alone until he was ready to handle it. As long as he can go in there and see her things it is a comfort and not to take that away. I have to admit I too find comfort, but also sadness. I will leave things as they are for now. I am just not so sure other people that may happen by the house is going to understand.

Life changes so quickly, and I find myself afraid to open his door in the morning, because I am not ready for the inevitable yet. I have not even grieved for Mom yet.

Another Day Repeated

I know how you feel, and I feel for you the angst, constant questions that are never answered so that your loved one can understand and exasperation begins to set in. Take a deep breath, realize this is not  your loved one , this is his/her disease and it is not going anywhere, it is not going to get better, however it will get worse. ALZ is not your friend, it takes away all that you once knew leaving an empty hole.

Just another day in the life of ALZ. I will write more, I had planned on it, but my mother his primary caregiver passed away and I have been working on non stop days where there is no time to sit and write. I will promise to write more later.

One escape when I get an alone minute