busy, busy, busy.

I abandoned this blog a while back, life just got too busy. Over the past 3 years a lot has changed for Mom and I. We finally won her disability case, she is fully retired now. I moved from my hometown a year and a half ago and am going to school and working full-time. The year I wasn't living with Mom took a pretty rough toll on her, she was living with my older brother and his wife, they did not treat her dementia with the severity they should have. To them her illness was kind of a novelty, like Mom was just forgetting little things, "it's not THAT bad, Kd, calm down." I wish she had never lived there but, I had to make a choice to get my life in a stable position so that she could have a stable home with me, permanently.
We live with my fiancee in LA. It's been a big change for everyone, especially since her dementia has progressed pretty quickly. My fiancee encouraged me to start this journal again and I think it's a good idea, it's great place to sort through thoughts and find community. I'll try to keep up with it daily.

An exercise in patience.

Mom had to get new glasses this week. That sentence makes the task sound so simple, it didn't end up that way. We headed out around noon to the eye dr. and didn't get back until 3. Picking out the actual frames she wanted is what took so long. As she was going through the racks she would pick up frames that she liked try them on, say she didn't like them or that they were to dark or too big and put them back. After doing this through 2 entire racks she would repeat the process, forgetting what she had tried on. When we are met with situations like this I usually let her go at whatever it is at her own pace, thinking about what it is she wants or figuring out on her own what it is she needs. I want her to keep her neurons firing as much as possible which isn't always easy to have the patience for but, I do my best.
After about 30 mins she kept gravitating towards the ones she liked, asking me if they were too big or too blah? of course they weren't they were so cute and finally after another 15 minutes she agreed and we were on our way to seeing clearly :) this a pic i took, she wasn't even posing is the funny part, she is just animated like this all the time:

Disney Update!

I just called my mom to check in on her, she mentioned that she'd like to go and get her hair cut. I told her that I'd get paid on Monday and we could go then. She asked me about when she was getting paid, I told her  at the end of the month and then she asked when she would be getting what she likes to call her "old people money". We are currently filing for disability and social security ("old people money") as a result of her dementia and other illnesses. Its been a long process waiting to receive her benefits but thankfully, her job has had her on medical leave and she still gets paid half of her old salary, which isn't much, but we make due. So, she asks me (she forgets we are filing all the time, so she asks me this a lot) how much she'll receive when we do get approved? I tell her i'm not sure maybe $1000? This time she replied, " Oh wow! Well we can go to Disneyland with all that money!"

I wanna go to Disneyworld.

A little while ago I made a change jar for my family and I to save for a vacation. My mom helped me by writing VACATION on a piece of paper and taping it to the jar. While we were doing this, we were talking about where we'd all like to go. My dad and I agree on Spain, one brother said Amsterdam (he's 19, of course this is his answer) the other said Brazil and when I ask my mom she gives me the last answer i expect... Disneyworld. I thought she'd say Italy, she always talks about going there or to Texas to see her family but no, it was just Disneyworld.
 A couple days later, she finds a contest in the Pennysaver to win a trip to DisneyLAND for 4 people for 4 days. She cuts it out and tells me I have to help go to the website and enter. After we do, she puts the clipping on the refrigerator. Of course, she forgets that we've entered the contest and every time she sees it on the fridge she asks me if I've gone to the website, I reassure her every time that we are well on our way to winning.
 I found her later in her room like this:

  Counting out some change she had in a jar in her room. I asked her why, she said, "for our vacation to Disneyworld."

can i have a couple bucks?

For the almost an entire year of my mother's life, my family and I have done everything for her. Scheduling her doctor visits, giving her her medications, handling her money, paying her bills, taking her shopping, on errands or pretty much driving her anywhere she needs or wants to go. When she was first diagnosed with dementia, she was still driving to do small errands by herself but twice in one week she came home, first not knowing where she puts her tax return money after cashing the check for it ( it was almost 3000 dollars we thought she might've lost, we had found it hidden in her room three days later) and second, she had lost her purse, telling me she did not even remember taking it with her or where she might have left it. Needless to say, driving by herself was not something we were willing to risk anymore.  
 My brother and I became her full time chauffeurs, which she did not seem to mind at all and neither did we after we got a good system in place with it. When she wants or needs something she tells us and we go. All of my personal errands and driving are usually done with my mom. I cannot complain, its great having the company. If my brother or I are going to a friend's house or work, we just check with one another and our schedules to be sure someone will always be with mom, to keep an eye on her, to help her if she needs it, give her meds. Make sure she eats well etc.  So we have been worry free, knowing if she is with us 24/7 no purses or money will be lost and more importantly that she is always safe and well taken care of. And she is been happy with it all or so i thought until she came to me with this conversation:

mom: " hey can i have a couple bucks?"

me: (surprised) " for what mama?"

mom: ( mad) " for whatever i want." 

And then she storms off, leaving me completely confused.  That same day we had just gone shopping. We had tons of food in the house she got some new things she wanted from target, it was a good day. Even though I handle all her money, she gets whatever she wants when she wants it even if she doesn't have the money for it i will gladly buy it because I am excited to see her take interest in things. I realize though that all this can be taxing on her independence but i thought she was happy. So i go to her room and ask her how much money she wants. She tells me she doesn't know she is just doesn't feel like she gets to do anything on her own. I told her i understood and explained that she had lost her licence with her purse so we started driving her everywhere and reminded her of the money she almost lost ( to which she replied, "you found it though right?") and that because of her memory trouble and confusion we are afraid to let her go out by herself or hold onto money. she understood and we agreed to start working towards her remembering those things better. Like where her phone or keys are or how much money she has on her. I told her it will take time but that i think we can build up to it. And she was happy  and i was happy to see her take interest in her own life again, even if it was a fleeting moment that her dementia may take back.  I can only remind her again and again that we are working towards her independence and that it will take so much patience from both of us but it doesn't hurt to try and if it fails, well at least we still get to hang out and do everything together all the time.

...makes the world go 'round, the world go 'round.....

My mom does this amazing thing sometimes, she sings.

Its always a treat to hear her sing, her voice is beautiful. Since I can remember she was always singing, funny little songs to make us laugh, to herself while she did chores around the house, to the radio, to anything, she loved to sing andIi always loved to hear her. Since her memory started to go her music isn't something I hear as much anymore. She can't always remember the words and for some reason she thinks that her voice isn't what it used to be (it's just as great as ever, I don't know where she got this idea at) so she isn't as quick to burst into song anymore. 

So when I was doing the dishes and I heard her quiet hum coming down the hall toward me I stopped and listened. She went around the living room picking up this and that, moving things, all the while humming. she  eventually became louder and louder and when she noticed me listening she stopped, looked at me, smiled and then proceeded to sing (and dance some of) a montage of the entire score of cabaret. 

She was being silly, of course, to make me smile and I did. It was a nice surprise to hear her sing that way again but what was most surprising was to hear her remembering almost every word and every note. I thought she had lost that some where in the mess of dementia, those words and the voice she has to sing them  but she hadn't, they were just waiting to be heard.

Roads?! Where we're going there are no roads!

i really just started all of this to tell everyone about my family. we are a pretty extraordinary unit. i feel like a jerk for talking us up so much but its the truth. Example: my parents are divorced and still live together. this was a decision made long before my mothers diagnosis. they divorced when i was 10. lived apart for 7 years. my father lived with a girlfriend during that time and when things went bad for him and he needed a place to stay, my mom let him stay with us. they weren't going to reconcile or  re-marry or anything. and none of us would have it any other way.
when my father moved back in with us, he did so knowing he wanted to be closer to my brothers and myself and if living with his ex-wife was the way to do that he was prepared to do so. and my mother, being as patient and kind as she is was happy to have him there, knowing full well that we would be happy to have him.  yes, they still live together today and yes they are still separated/divorced and are perfectly happy with it.. its a strange dynamic but its taught all of us how to be a much more cohesive unit. if my parents can put aside their differences and live together for their children and their family as a whole, it teaches us, their children, how to make sacrifices for each other and for our family. and i couldn't be happier.

i think this a huge part of what's gotten us through my moms diagnosis and what keeps us going day to day.
when my mother couldn't work anymore my dad took up paying the bills. when i have to work, my younger brother takes care of my mom. and when we are all frustrated and tired and stressed, my mom is there doing her best to keep her head in the game, offering to cook for us or cleaning up the house and utilizing one of her best talents, making us laugh. in spite of everything, her feeling so sick and tired and confused she still does her best to keep us going with a smile. its always motivation enough, even on my hardest days, to get up and carry on.


i guess now i feel a little less like a jerk for talking the fam up with all of that explained. i should have just began and ended this with: I'm so grateful to have the family i do. I'm so grateful for the people we've made each other and the sacrifices we've made to get there. and that it is my hope that with this log, we can extend our best to you and yours.