Since Thanksgiving, I’ve been trying to write a blog on my thoughts, feelings, the holidays and unfortunately emotions got the best of me. (This will be discussed in another blog.)
I was invited to a cousin’s house for dinner, but this is where the “I could blast everyone” feeling due to Alzheimer’s kicked in. I respectfully declined stating that #1 I was tired, which I was, but I also felt if you didn’t care how I was doing or how “we” were doing a week ago, or if we needed something, a piece of bread, anything; then what do I have to say on Thanksgiving? True it’s a holiday, time for family to get together and catch up, but the other 364 days no one’s concerned about what’s happening over here, I couldn’t be concerned going through the motions for 1 day.
Without sounding bitter, what’s added to this angst is the fact that I am unemployed and financially it has been a struggle. The reasoning for my mentioning, “if I needed a piece of bread.” I’ve been managing before Thanksgiving and I make my own food anyway on Thanksgiving, so again, that 1 day wouldn’t make a difference.
I don’t expect anything from people and don’t hold everyone to the same measure. People have different places in my life, but if friends miles and states away offer their concern, wished they were closer to able to help with something, or just give a call or make a visit to check in on me, is it wrong to hope those related to you might? And yes, a call does wonders, any caregiver can tell you it’s nice to have something else on your mind.
Moving on….
Next were the days leading up to Christmas, one of my favorite holidays and it found me again unable to fully enjoy the “spirit” of the season. Still being unemployed, I knew I couldn’t shop as I used to, decorate as I used to, and true I’ve been there even when I did have a job, Alzheimer’s just zaps the joy that even Santa add. 
I understand mom’s not going to know that it’s the holiday season, no matter how much I wish she did. She loves music and really enjoyed listening to the Christmas music, but when I’d tell her Christmas is coming, it’s as if I was speaking a foreign language to her. I wish she could enjoy the season like she used to, or watch the holiday programs on TV remembering who the characters are, but those days are gone.
Why no holiday joy? Because Alzheimer’s doesn’t take a break. The daily caregiver duties don’t end, the role of daughter has to take a back seat to deal with changing moods, being called names and jumbled sentences. But in the stress I’m learning to look for the “good” and my “good” was being able to travel with mom and dog in tow to NY to my Godfather’s for Christmas. We stayed in a hotel in New Jersey and anyone who may remember last year’s debacle, I was better prepared for this trip! The only thing is the lack of sleep I got because being in a new place, keeping mom in the bed was a task until she finally fell asleep and with that refusal to stay in the bed came the defiant behavior.
To be honest, caregivers have to do so much and as your loved one changes to a declining stage, there’s even more to do or handle. But with all of the physical to-do’s, the defiance is the worst part. At least I think so. Yes you have to brush it off, and know your loved one isn’t in the old frame of mine, but admittedly it’s not always easy to do.
When we got to my godfather’s his goal was to help keep an eye on mom so that I could get a little “ahh,” some rest. Or as much as I could. She had to go to the bathroom quite a few times, but I wasn’t complaining. I knew those trips up the steps to the bathroom, would wear her out and I’d get a good sleep later.
I didn’t get any physical gifts, it didn’t bum me out, though I would have loved to have had something to rip open, but my greatest gift is and has been my Godfather. So if you’re wondering why he didn’t give me any gift, he’s been helping me throughout the past few years and without his support emotionally and financially, I’d be up more than sh**’s creek!
Being away for only 2 days wasn’t long, but it helped to clear my mind and gave me a rejuvenation of sorts. It felt good to be in a different environment and was what I needed to get me prepared for what’s to come.
2012 is going to bring several changes. I don’t know what the end result from the change will be yet, but it’s coming. When the new year rang in, I felt better prepared after taking some time to clean (yes I’m one of those people) as best as I could and more importantly taking some time to reflect and think. I needed some me time before 2011 left. We needed to make peace.
Today I’m still tired and feeling worn and the rejuvenation has fleeted, but not the optimism that’s trying to grow. As uncertain as this year’s journey is going to be, is as ready as I’m going to get myself to be prepared for what’s to come.
Happy 2012!
CONFESSIONS OF A MASTER CAREGIVER 