its the same old story

when i look back at the start of this "new journey" i see that i was not realistic about what was going to happen. so many thoughts swirl in your head and its hard to figure out what, exactly should you do, what should take priority. of course you think about your loved one that was diagnosed with alzheimer's and your first thoughts, at least for me, was what do i need to do to make dave's life less frustrating. you read books, search on the internet for any tid bit of information that will help you understand what is going on, what to expect as the disease progresses, and the best way to deal with all the inevitable changes.  like anything you are researching you try to tuck into your memory the useful information and throw out the "junk".  but i will tell you no matter how much you think you are prepared you never fully grasp the emotional and mental toll this journey is going to be.

with each new "phase" of the disease you reach back into that file in your brain and pull out the information that will help you make it through with as little stress as possible. you feel relief that some of the information really is helpful. but as i stated before you can never be prepared for the emotional roller coaster.  i didn't realize that as more and more responsibility was piled on i would become a wreck. i thought fear of the unknown would be the worst but i have experienced so much guilt, frustration, envy, anger (lots of that one) and even selfishness.

i get so frustrated and angry. the anger is not at dave the anger is at the disease. i just want to shout "are you kidding me?! i just get used to dave losing another piece of himself when it happens again. why can't this slow down!? no amount of medication is making a difference.  the worst part is that i am finding it more and more difficult to take care of daily task and dave.  i have envy of others who continue on with their life plans. every single day i am reminded of what we have lost. every time i have to make a big decision i get so frustrated and angry then i cry later when i am up all by myself.  i no longer have that partner to help me decide if i made the right financial decision, or if i am being too harsh on gabriella (or not pushing her enough) and i no longer have the partner that i can just talk about nothing with and have him understand. i am tired of repeating myself. i am tired of eating my emotions to spare dave a bad day.  i hate that his emotional being and his day is based on how i feel. i do not want that responsibility any longer.

so there it is, the elephant in the middle of the room. how long do i keep dave at home? am i being selfish when i think about possible placement. what is it going to take? what kinds of things can i do to keep him at home longer? i did say i would not put him in a nursing home at the beginning of this journey but that was before i knew how difficult it would be and how much it would take out of me.
am i failing dave if i place him in a facility? i feel like a selfish failure. i feel weak and incapable. i feel overwhelmed.

i have finally hired an in-home caregiver. she will be here two times a week for 3 hours each time. i picked an agency that has specialized training in the care of alzheimer's.  care for someone with alzheimer's is not the same as caring for someone who is just aging and experiencing the "usual" aging issues. this caregiver not only helps in the care of dave but can help with household task. this was a huge step for me because i am uncomfortable with people in my home. i was not blessed with the gift of hospitality.  i am also not good at asking and utilizing people for help so i hope that i will utilize the caregiver for all that i can. i will find relief 6 hours a week but truthfully its the other 162 hours of the week that i am worried about. there is only so much i can get done while the caregiver is here. i will still have to take dave with me for some grocery store trips and other errands. but truthfully i don't want to, at least not this dave. it has nothing to do with embarrassment or his inability to be gone for hours like he used to be, its the companionship on those trips that i miss the most. we talk less and less to each other.  sometimes i feel keeping dave home is more selfish than placing him. he has told me before that he is tired of trying which i take as him meaning he is tired of trying to be his old self or tired of trying to understand our world as his alzheimer's world becomes larger and larger. so, we will hang on a little longer.

monica

i have not stopped looking at joyful moments in each day i am just finding it difficult to blog my monthly list. i am listing some good moments that have occurred. unfortunately the list gets shorter and shorter. most of the time they are not repeated but still they happened and it was good!

• unbuckled his own seatbelt.
• said my name.
• said 3 complete understandable sentences to the receptionist at the dr's office.
• remembered how to open the car door from the inside.
• rinsed the dishes and placed in dish rack.
• washed himself in the shower.
• changed his cloths himself.