Well first off, I want to say thanks to those of you who have commented both on this site and through email or facebook. I appreciate you taking the time to read my ramblings and to express your support for me and my family. It really means a lot.
So, I have been meaning to post for several days now. A lot has been going on with my mom...mostly little things, but they're building up and so the time to let off some steam has come. As my counselor so wisely pointed out, dealing with the little things will keep them from piling up below the surface and one day causing a breakdown seemingly out of nowhere. So anyway.
Having my own life
As I mentioned in my last post, I spent last Wednesday through Sunday at a junior high youth camp about half an hour from my house. I had a blast...it was such a fun and refreshing time, and it was so nice to meet new people and just be goofy for a while. Yet, Friday I ended up coming home for a couple hours when I knew there wasn't anything pressing I needed to do at camp. I had been talking to Mom every day like I always try to do when I'm gone, and I could just hear in her voice that she was down. I wanted nothing more at that point than to come home and just be with her. I mean, I knew that if she was having a bad day, there was nothing that I could really do, but maybe just cheer her up by keeping her from being alone all day. And once I got home, I was so glad I went...Mom was so happy to see me. Sure enough, she was still in her pajamas in the late afternoon and seemed like she had been on the couch most of the day.
Now in this situation, it really wasn't a big deal that I skipped out on a couple hours of camp to make my mom's day. But it got my mind running...what happens when I'm supposed to go back to school in the fall? After being so used to being here and helping, I have no idea how I'm going to go back to the utterly helpless position of being three and a half hours away trying to concentrate on classes. From where I stand now, that just isn't gonna happen. But I have no choice! I just have one more year; I can't quit or transfer. And Mom wouldn't want me to. That still leaves the plain and simple fact, though, that going back to school is going to be one of the hardest things I will have to deal with yet.
I was commenting to a friend that other day that I really have no life this summer. I said that it's basically because most of my friends are not around. Once I really got to thinking, though, I realized that I don't have much a life because I'm making that choice. Sure, some of my closer friends really are somewhere else this summer, but certainly not all of them. And I've spent time with people who could easily become good friends should I allow the time to get to know each other better. I guess most of the time, I'd just rather stay home. What I'm really trying to figure out is why that is. Maybe it's depression...I know that can cause a lack of interest in enjoyable activities. Maybe it's because I am generally so emotionally exhausted from daily living that I feel like I don't have enough left to invest in a social life. Maybe I feel guilty about having fun and momentarily forgetting about what's going on, like I'm betraying Mom somehow. Maybe it's all of the above. Whatever the reason, I know it's probably not healthy for me to have little interaction with people outside of home and work. So I'm trying to fix that...we'll see how it works out.
Continuing on this topic of having my own life, Mom has started a very interesting (and heart-breaking) habit lately. She's been telling me all of these things about how she wants to see me live my life in the future. For example, she's talked to me at least four times in the past week about my wedding. I keep telling her that's really not something we need to worry about until I at least have a boyfriend, but she wants me to know how she envisions it, "just in case." You know what my three new least favorite words are? Just in case. All the time she talks about just in case...just in case she's gone, like not really aware of her surroundings, or just in case she's gone. I can't stand to look at her when she talks like that. She can tell by my lack of eye contact and overall tension that it bothers me, and then she gets upset. "Wouldn't you rather know what I want and talk about now than not be able to find out later?" Well no, Mom. Right now I still don't like to think about the future very often, so if you want to tell me these things then write me a letter. That's what I should tell her. Have I? Of course not. I'll take one for the team and make her feel better knowing I know what she wants. If only this weren't so hard. And falling right in line with all the marriage talk, Mom is trying to "help" by telling me why I'm not attracting guys. Now, this might be normal for some moms...but mine has never been critical or nagging and she has never overstepped her boundaries. But recently she tells me all the time how I need to put myself out there more and try not to be so intimidating and tell my friends to fix me up and get involved in other things to meet more guys and on and on and on. I did the smile and nod thing really well for a few days, but wow. I think she's afraid that if I don't find "the one" soon, she might not be lucid for the wedding or the grandkids. Meanwhile, I'm still trying to get through school and figure out where to go from there.
Two sides to every coin
Things have been pretty morbid lately. Another wish of Mom's that she has made very clear to Brian and me is that there are certain members of our family who are NOT allowed to attend her funeral under any circumstances, because they refuse to believe anything is wrong with her (a somewhat common experience among those diagnosed with early onset AD). Great. Let's talk about death and extending grudges beyond the grave. Excellent. On a similarly depressing note, I had a thought today that made me want to give myself a lobotomy. I was letting our new puppy inside the house, and I thought, "What if Mocha outlives Mom? It's a good thing Mocha and Brian are bonding so he'll have a companion." Where this thought came from, I have no idea. All I know is that I wish I could forget it ever crossed my mind.
On a lighter note, though, here's a little comic relief. For my internship at church this summer, I am working on starting up a ministry for twenty-somethings. Aside from a class and a small group, we're also trying to plan special events. This Friday night we're having a campout. It was brought to my attention today that Mom has been going around telling people that the twenty-somethings from church are having a sleepover...she couldn't think of the word campout. I might have some explaining to do! :)
The current state of affairs
This past Monday, Mom had an appointment with a doctor from the state to reevaluate her disability benefits. When she had a similar appointment last year, the doctor was horribly rude and really upset Mom, so she was very anxious about going. I am happy to report, however, that not only was the doctor incredibly kind and understanding, but he recommended that her disability be permanent which means she will no longer be subject to yearly review. That's one less stressor that her and Brian will have to deal with now.
Tomorrow Mom, Brian, and I have an appointment with Mom's general practictioner to talk about ways to cope with the symptoms of AD and APS. I'm glad for the opportunity to sit down as a family with a professional to talk candidly about where we are, but I am also very scared. All the impressions I have received from Brian lately lead me to believe that he is in extreme denial of Mom's health problems. He may accept things as they are now, but he commented to me that he's not sure things will get worse. What I thought, but didn't say to him, is that things have already gotten worse and Alzheimer's by its very nature is a progressive disease. I think Brian has slowly started to think about the possibility that this is really happening, and I'm afraid it might come to a head tomorrow. Mom and I have been doing lots of reading and research from the beginning, which I think has helped us both see what's happening. Brian only recently has begun consulting outside sources and reading up on AD. As he has done so, I think he has seen how Mom's experiences correlate with those he has read. Cue reality. Today he was quiet all day, and seemed kind of down. When I asked him if he was a little down, he just nodded his head slightly and started tearing up. I dropped it.
How am I going to support both Mom and Brian once Brian finally lets the full weight of this sink in? I've had the advantage of a professional counselor and extreme introspection to help me process, but Brian is way behind the curve. I just have the feeling that some sort of floodgate is going to break loose soon, and all hell is going to come with it. And I feel like its my responsibility to keep everything and everybody together. Whether that means cooking dinner, walking Mocha, shoving my own feelings aside to indulge someone else's need to vent, or putting my plans on hold to be there for my family, I will do whatever needs to be done. The question is, how will I do it and hold onto my own sanity? And I suppose I'm just getting ahead of myself again, because it isn't so dramatic as I make it sound right now. But still, my gut just tells me that something's coming.
You know, I think I'm going to sleep a little better tonight for getting all that out. Which would be great, because I slept horribly last night. So here's hoping tomorrow's a better day and that our doctor's appointment is beneficial and minimally upsetting. I'll try to report on that soon. I welcome your comments and thank you for stopping by.