Tuesday, July 31, 2007

No, I'm not dead.

I have not really felt like posting for the past week or so. Or more accurately, I guess, I have had a lot of things I have wanted to post about but the urge never struck me at a time when I could sit down at the computer. Now that I am here, I don't really know what I have to say...so prepare yourself for a stream-of-consciousness read.

I noticed a very interesting thing yesterday and today. Last night (Monday) was puppy kindergarten, the training class for Mocha. I can't remember if I've said anything in my blog about that or not...it's every Monday for seven weeks. Brian went with Mom the first night, but I have gone for the last two. This week was not a good one. I had been babysitting all day long so I was already tired when it was time to go to class. Mom is always pretty anxious and tense when riding in the car (she's afraid I'm going to rear-end the car 500 feet in front of us), and having her keep the dog calm on a twenty-minute ride doesn't help matters much. Apparently Mom was tired too. Mocha was excited to be in the car, and Mom got ridiculously frustrated with her. She kept telling her things like, "Mocha, you need to get on the floor, not the seat!" and "Stop jumping up on me!" I very calmly reminded Mom that Mocha doesn't know what those words mean, and to try to use the commands that we were working on with her. She ignored me. By the time we got there, Mom and I were both thoroughly worn out.

Then this morning, we had to take Mocha to the vet to get spayed. Again, the three of us got in the car. Again, Mocha was excited and tried to wander around the car. This time, Mom was calm, soothing, and gentle, petting Mocha and speaking to her softly to get her to settle down (which worked fairly well). These two scenarios illustrated something for me: Mom always talks about how mornings are her best time of day. I guess I was never really able to see the contrast between mornings and evenings before because in the mornings, I am usually either still asleep or getting ready for work. The contrast was so distinct it was remarkable. This morning there was not even a hint of frustration or tension, whereas just the night before I was afraid Mom was going to have a meltdown. This disease is so weird.

Talking about being in the car reminds me of another thing. I mentioned how Mom gets very nervous when she is riding in the car with me. Well, I have realized that I automatically take on the tension that I feel coming from her. I may not even be consciously aware of the fact that I am doing it, but then suddenly I find that my knuckles are white on the steering wheel, I'm clenching my jaw, tightening my muscles, or holding my breath. The same thing happens in other settings too. When we're at church and she's having a rough time, I get high-strung as well. Even if we're just watching TV and she starts fidgeting a lot, bouncing her knee, or shaking her foot, I tense up. I don't know why this is.

A couple days ago, Mom made a comment...I'm not sure I even heard how we got on the subject. Brian, Mom, and I were sitting in the basement and Mom said, "We love Kelsi the most. Kelsi is the only child worthy of our love." Now, keep in mind that I have a brother and three stepsisters. I just kind of laughed a little and made some comment about how I just keep coming back home and they couldn't get rid of me if they tried. Then, Mom went on about how one's a wild child, two don't ever call, and the other doesn't know how to love. "I want to line them up in a row and shoot them," she said. My eyes popped open and I looked at Brian. "I want to pluck their eyeballs out." I quickly urged her to stop. "And then make them eat them," she finished. This is not my mother. Neither is the woman who said just earlier this evening, "I want to rip all of their fingernails out," again referring to her son and stepdaughters.

I ran across something my mom posted on the message board for people with early onset Alz. She said she is so afraid that she's not going to see me get married or have kids. I figured as much, but it still stings to see it come from her in writing. I'm afraid too.

I think Mom is feeling very isolated and alone right now. She has asked for my help in figuring out how to navigate the Alz message boards, but seemed disappointed when I showed her what she could do. She asked if that was all there is...that I seem to be getting so much out of it, but she doesn't get a darn thing. She said almost no one with the disease is actually talking on the board and no one understands her. She doesn't want to go back to the support group in August because it was all caregivers last time. She doesn't fit in with other Alz patients because she is only 45...the issues we run into are drastically different than the issues faced by someone further along in years. I don't know what to do...at the end of the day, after all, I am only her healthy daughter. And I really don't understand what she's going through, as much as I want to try. I can listen, but I can't understand in the way she needs someone to understand.

I should get going, but a little update about me first: even though this post is on somewhat of a down note, I do want to report that I feel better than I have in a while. I still have the same worries and fears and hurts, but I sense that I am better able to navigate through them and my desire to sleep all the time is subsiding. I am also slightly more motivated for things than I have been. So, woohoo for all that! Gonna end positively this time. :) I welcome your comments and thank you for stopping by.

Wednesday, July 25, 2007

Perhaps a laugh or two...

Happy Wednesday! We are officially halfway through the week. Hold on, because the weekend is coming! Tonight I thought I'd share some more stories...slices of life, if you will. Welcome once again to our world.

A couple weeks ago when we had the family meeting with the doctor, a funny little exchange occurred. I failed to post about it at the time because there were much more serious issues to talk about, but today I was reminded of this humorous event. I asked Dr. Mowry to tell Mom how important it is to eat regular meals, even if she doesn't feel like eating. I figured if Mom blew me off, then at least she may listen to the doctor. Mom explained how sometimes she doesn't want to eat anything, so she wanted to know if maybe during those times she could drink Boost (the nutritional supplement). Dr. Mowry became highly alarmed..."Tami, don't you know that's bad for you?? We can't have you doing that!" Brian was equally agitated, but I couldn't figure out why they were both getting so upset about it. We quickly realized that when Mom said "Boost", Dr. Mowry and Brian instead heard "booze." Drinking booze when she doesn't feel like eating...priceless. :)

A little over a week ago, I signed up for GLO. For those of you who aren't familiar with it, it stands for Greetings to our Loved Ones. Caregivers of loved ones with Alz send cards to other caregivers' loved ones. To sign up, I emailed the woman who organizes it with my mom's address and information about her hobbies and likes to get on the list. I didn't tell Mom I had done it, because I read on the Alz message board how happily surprised one woman's mother was when she received the first card. I thought it would be a nice surprise for my mom too. Well, I didn't anticipate that Mom would get cards when I was Nashville. For four whole days, Mom and Brian wondered how in the world people in other states found out personal information about her and why they were sending her cards. One talked about us having a chocolate lab puppy, and another mentioned having a shared love of birdwatching. Mom was thoroughly freaked out, and Brian was very worried about what Mom may have signed up for online, who had her personal information, and exactly how much they knew. I guess I should have at least told Brian, even if I wanted to keep it a surprise for Mom. You live and learn, I guess. But I felt so bad for confusing them and making them worry for several days!

I've really got to start posting at some time other than right before bed. I'm afraid I have to stop here for tonight because I am oh-so-sleepy at the moment. I welcome your comments and thank you for stopping by.

Backtracking a bit

So I said last night that I would have to fill everyone in on the events of last Tuesday, a week ago today. Another very, very emotional day. At least this time there was some good emotion sprinkled in with the bad. By the time the day was over, I was absolutely exhausted (which is why I didn't post before I left for Tennessee). But I still feel the day is worth recounting now.

Mom has still been driving a little. After she had her seizures, she didn't drive for a little over a year. Several months ago, though, she started again...just making small trips to familiar places. Well, last Tuesday she had a whole list of places she was going to go: to the lab to get some bloodwork done, to the pharmacy, to the library, and I think the grocery. I was a little concerned that she had too much planned, but she and Brian had talked it over and he thought it was okay since she had been feelings decent. The worst part was that she turned off the ringer on her cell phone, because she didn't want it to ring while she was driving and scare her. I know that's valid, but I didn't like knowing that it would be difficult for me to get in touch with her.

I was supposed to have a meeting with my pastor for my internship, but I arrived at church only to find out that he was doing a funeral of which I was unaware. Having nothing important to do in the office, I headed back home. I think it must have been divine intervention. I hadn't been home for very long when our doorbell rang. It was one of neighbors, who I will call Sue since I'm sharing some of her personal information. She asked if my mom was home, and I said she was running errands...well, Sue said she had tried to call her about ten times and got no answer, but she really needed to talk to her. That's when I realized that underneath her big sunglasses, Sue was crying. I hugged her and said I know I'm not my mom, but I would be more than willing to listen or talk or whatever she needed. She and I don't know each other that well, so she said she would go back home and wait for my mom to get back.

Let me pause the story to give you some background on Sue. She and my mom became very good friends (as Mom is prone to do, like I explained in the last post). Even though Sue is younger, they are pretty close. Mom loves Sue's kids and helps Sue out with them whenever she's not too tired, and Mom is such a great listener that Sue has really opened up to her. We found out that Sue suffers from bipolar disorder, and that once she starts feeling better, she stops taking her medication. That leads to all kinds of problems. Apparently, Sue's fiance had threatened to leave her if she persisted in refusing to take her medicine.

Well, they had been in a big fight the night before and earlier that morning. Since Sue isn't the most emotionally stable person in the world (as though I'm one to talk, but whatever), she was taking it very hard and not doing well at all. Mom eventually called me to check in and let me know that she was on her way home, and I told her about Sue. Mom called her and told her to come over to our house, and that I would wait with her until Mom got home.

When Mom got back, Sue just completely broke down. But in that moment, I saw my mom step up and be like a mom again...she just held Sue and rocked her back and forth as she cried, saying, "There, there honey. I know it hurts, I know it hurts. Just cry." I was so proud of her. It was a different story when Sue started telling the whole story and looking for advice. At one point, Mom turned around where Sue couldn't see and mouthed, "Help me!" She had no idea what to say. I was in quite the odd position trying to mediate between the not-so-rational thoughts of someone with Alzheimer's and the post-breakup rantings of a non-medicated bipolar woman.

We spent hours together, and finally got Sue to call the mental health center to talk to someone about getting back on her medicine and continuing the counselling she had quit before when she felt better. They told her when to come out, so Mom and I took her there and waited with her. I was so amazingly proud of my mom for doing such a good job comforting her, and for not getting upset or anxious at all. It was like in the moment of crisis, her motherly instincts and adrenaline overpowered the cognitive difficulties she faces.

But the day doesn't stop with our trip to the mental health center...as though that's not draining enough. Mom and I also went to our very first Alzheimer's support group meeting. Brian was working overtime so he wasn't able to come. Well, before Mom got ill she worked as a case worker at the county Job and Family Services. The guest speaker for the evening happened to be Mom's old boss, talking about Medicaid. Mom's old boss was not the most supportive person when she was going through the testing phase to figure out what was wrong, and so I don't think she's really a fan of him. She called the organizer of the group that morning to see if it would all be the Medicaid presentation, or if there would be talk about other things as well. The woman assured her that the presentation would only take up part of the time.

I could tell it wasn't good when Mom lowered her head and wouldn't look at anything but her lap. That seems to be something she does when she is anxious, unhappy, or doesn't like what's going on around her. I gently asked if she was okay (which I generally try not to do because it's better to find other ways to snap her out of her thoughts, but this time I was at a loss), to which she started writing notes to me on her handout. She wrote "this is why I hated my job!" referring to all the restrictions built into the system that denied people resources. Then she wrote, "Support????" because the time was wearing on and she had yet to see anything she construed as helpful to her. Finally, she jotted down, "ugh!" in regards to nothing in particular. I thought to myself that we just had to get through the rest of the time, then we could go home and she would settle down.

What I didn't anticipate was for her to share her thoughts with everyone in the room. In the middle of the question and answer period regarding Medicaid, Mom piped up: "I thought this was supposed to be a SUPPORT meeting! I don't feel very supported!" She continued by insulting the speaker and basically calling the organizer a liar for telling her the meeting would be about more subjects than Medicaid. I sat there unsure of what to do, thinking over and over in my head, "This is bad. This is very bad. Oh no."

There were some people who seemed a little shocked at the mini outburst, but it ended up changing the entire direction of the group. With that, the Medicaid talk was basically over and all of a sudden everyone wanted to hear from Mom. She was the only one present who actually suffers from Alzheimer's; all the others were caregivers or nursing home employees. Coincidentally, I am pretty sure that almost every single caregiver was older than my mama. Talk about hard to handle. The rest of the meeting went very well though, and we left with Mom feeling as though she likes the group and wants to go back again. I made a few new friends as well.

Sorry this post is so long...but like I've said before, I'm a sucker for telling stories. Both of those seemed like good ones to me! I should probably be getting to bed so I'm not so sleepy tomorrow. I welcome your comments and thank you for stopping by!

Monday, July 23, 2007

Meet Tami

Hello everyone...sorry it has been a little longer between posts this time. I had the wonderful opportunity last week to go to the Music and Worship Conference at Christ Church in Brentwood, Tennessee. It was great to get away for a bit, spend time with some amazing people, and get good info for ministry. I have some catching up to do on the blog, as the day before I left was pretty eventful. Hopefully I will post tomorrow about what happened...but for today, I want to do something a little different. I have decided that I want to blog about my mama: who she is, what I love about her, what she means to me. Today is your lucky day; you get to read a non-depressing post! :) I am realizing more and more how important it is to remember and think about Mom as I know her, not as she seems lately while disease is changing her.

All my life, it has been me and my mom. My parents got divorced when I started middle school, and my dad went off the deep end for a while. We didn't get along at all, and he was full of bitterness and anger. For several years, I didn't even speak to him. During that time, Mom took continued care of my brother and me. Then when my brother made bad choices and no longer wanted to live with us, two remained: Mama and me. We clung to each other during the tough stuff and we celebrated together when good days came. When Mom got remarried, she made sure he was a good one and that I approved. After all, he wasn't just marrying my mom, he was marrying her kids, too. So while others in my life have come and gone, Mom has always been by my side...she and God have been my constants.

Mom wants the best for me. In opportunities, in experiences, in school, in career, in relationships...she has always encouraged me not to settle and to reach my full potential. She wants to spare me from hurtful things and from making the mistakes she made. Like most mothers, she wants a better life for me than she had for herself. She may not always understand where I'm headed or what my goals are, but she trusts me enough to support me even when she doesn't quite get it.

If I had to sum up my mom for someone in one word, I guess I would have to say "cute" because that's how other people always describe her. Almost every single one of my friends who has been to my house says, "Oh Kelsi, your mom is so cute." First of all, she is very petite, which is a good starting point for being cute. But what they're really getting at is her personality. She always bends over backwards to be accomodating and a good hostess...no one would ever leave my house hungry. In fact, my house is famous for a stocked snack drawer, amazing homemade meals, and at least three kinds of ice cream in the freezer on any given day. Mom invites people to the house constantly. She makes friends so fast it's ridiculous...which is funny, because I think of her as more of a shy person. But when she gets talking to someone one on one, they become fast friends.

I have met few people more caring than my mother. She has such a huge heart and always goes out of her way to help people whenever she can. Whether it's sending a card, saying a prayer, giving time or money, or just giving a big hug, Mom is very sensitive to the needs of others. She takes special delight in helping children by letting them know they're special and loved, and making sure they have what they need. Mom is like a kid-magnet...anywhere we go, they instinctively flock to her and want to sit on her lap or play or talk her ear off. I think it's because when they do, all her attention is on them and she makes them feel like they are the most important person in the world at that moment.

So that is a very, very brief snapshot of the woman I know as Mom. We've had minor misunderstandings through the years, but we have always had a strong bond and love for each other. Most women say only later in life do they become friends with their mothers, but I have the blessing of being friends with mine my whole life. There has never been a time when we have not been close (including my teenage years!). I guess no matter what happens in the coming days, I can be thankful that I have had the privilege of being the daughter of such a wonderful woman for 21 years...that is more than a lot of people can say. I welcome your comments and thank you for stopping by.

Sunday, July 15, 2007

One more day down, a lifetime to go...

Today contained no crisis. Praise the Lord. We've had way too many days lately where things have just fallen apart, and it's nice to have a calm day with minimal upset. Still though, there have been plenty of reminders today that Mom is changing and there's nothing we can do about it. I guess this is just how it's going to be now. Knowing that almost makes me excited to go back to school and not have to face this on a daily basis, but then the guilt kicks in because I really should be with my mom and I certainly shouldn't want to leave Brian behind to deal with this alone.

Sensory overload

One big reminder that Mom is struggling came during church this morning. In the middle of one of the songs during worship time, Mom sat down. I kept singing but watched her out of the corner of my eye, thinking that maybe she was just tired of standing or that she was being touched by the music and getting emotional. When the song was over and I sat down, however, I realized that something was wrong. I heard her tell Brian, "There's just too much going on and it's too loud." Now, the music was no louder than it ever is. The song did contain a part when the chorus and verse were being sung overtop each other so maybe that was hard for her to follow, but I didn't think it would be bothersome. On the contrary, she was visibly troubled. She crossed her legs and held her arms across her chest, head down, forehead wrinkled up. She stayed like that through the entire rest of the service. Even when David was preaching, she never once looked up at him. At times she would bounce her leg or shake her foot nervously. The tension radiating off of her was so overwhelming that I found myself feeling nervous too...or at least very concerned as to whether or not she was going to make it through the service.

When we got home, Mom seemed to be fine again. She talked about it a little bit at lunch, though, and asked Brian and I if the music seemed especially loud or if David was speaking more loudly than usual. We kind of looked at each other, not wanting to say no and upset Mom, but knowing that nothing was different. Our silence gave her the answer, and this look came across her face...the look that says, "Oh. I guess I'm confused again. I'll just shut up so no one thinks I'm stupid." Of course we don't think she's stupid, but I can always tell that she thinks we think so.

Continuing aftermath

Mom's stomach has really been bothering her the last couple days, to the point where she doesn't want to eat (with greater intensity than usual). She is in a lot of pain and has been laying around quite a bit because of it. No medications have been changed with the exception of adding Rozerim to reset her circadiam rhythm so she can actually sleep at night. Brian checked its side effects, and we ruled that out. Mom said she thinks she is still experiencing problems from the day she got so upset. And I can't help feeling like it's my fault that it all happened.

Bonding through heartache

Good news is, though, I feel like Brian and I have really bonded recently. We've gotten extra good at reading each other's expressions without Mom really even knowing what's going on, which is uber helpful. Stares, sighs, and raised eyebrows can now deliver paragraphs worth of information. And we hug a lot more now. I've always been a hugger; to me, there are precious few things on earth better than a good hug from someone you love. I think Brian's and my hugs do a lot for both of us, because we are reminded that we're not alone. And what a huge thing that is right now.

There is something so unique to dealing with Alzheimer's and other dementia-related illnesses. Only people who have experienced it can understand it. That's one of the worst parts about it, I think...the isolation that comes from feeling like nobody gets it. And a lot of people don't want to get it. Even good friends sometimes don't want to take the time to try to understand what it's like, so home becomes this box that no one can peer into and only the people in the box know what it takes to get through a week there. That's why I don't like telling people for the first time that my mom has Alzheimer's. I usually feel like I might as well have told them that she has the flu, for the way they respond. "Oh, that's too bad. I'm sorry honey," they say. And then when I am still trying to deal with it a few weeks later, they're surprised, like I should be over it or something. People like that drive me nuts.


Tomorrow is Monday. That means another week looms ahead. I wonder if I'll ever get back to the place where I'm excited to begin a new week, instead of dreading the emotional upheavals that will invariably occur? One can only hope. I welcome your comments and thank you for stopping by.

Friday, July 13, 2007

The day from Hell

After my last post, I was looking forward to writing a post that wasn't so depressing. Things actually looked up for a little bit; I had a decent day on Tuesday and a really good day on Wednesday. I was going to post about how things are better and I was just having a bad day before. Then today came. Today is one of those days I wish I could erase from my life...you know, the kind that leaves you so hurt and exhausted and beat up that you don't even know what to do with yourself? That was today.

Conflict begins

When I got up this morning, Mom was taking Mocha on a walk in keeping with the schedule we had made. I had my breakfast and got some things done, then Mom got home. She called me outside to the back porch swing because she wanted to tell me about what had happened earlier in the morning. I knew nothing good would come of a conversation starting out like that. Mom called my dad earlier in the week to ask if he would help in paying the interest on my student loans from month to month so it doesn't accrue, as well as some other financial help. He said that he would think about it and call her back. Well, he called back this morning, and long story short, he isn't in the position right now to help, Mom got upset, and they exchanged words in a very mean and nasty fashion. Several phone calls took place, including calls between my mom and my dad's parents and my brother. People said hurtful things all around, and it was a bad situation in every respect.

Conflict escalates

As Mom recounted to me what happened, I told her I was so sorry that Dad and Greg (my brother) had said such hurtful things to her. She was getting emotional, and I was trying to stay on an even level so she wouldn't get more upset. Well, all of a sudden it was like something snapped in Mom. She started crying harder and looked me square in the eye and said, "Kelsi, aren't you mad at them for treating me that way?" I told her of course I was mad...but apparently my calm reaction wasn't enough of a response. She started screaming at me, saying it hurt her that I wasn't more upset about it and that she wanted me to call Dad and Greg, in front of her, and let them have it. By that point, I was crying...I was so scared. I have never seen my mom the way I saw her this morning. There was so much hatred on her face as she screamed at me, and I didn't know what to do. I asked her please not to put me in that position. I said that I love her, and said, "isn't that enough?" But she wanted me to call them, to do something about it, to stand up for myself. What I think she really meant was to stand up for her. I was caught between a rock and a hard place, and I had no idea how to respond. All I knew was that I was frightened to see her the way she was this morning. Eventually, I just couldn't take sitting there anymore. I told her that I love her, but that I needed to go inside.

Conflict explodes

When I got inside, all I wanted to do was leave the house. I wanted to go for a drive and put on some music and just clear my head. I knew, however, that I couldn't leave Mom alone when she was upset. I tried calling Grandpa Hoops and Peggy, Mom's best friend, but neither one answered their phone. So I called Brian at work to ask him our neighbor's last name, so I could call her and see if she could come sit with Mom. Of course, even though I tried to sound like I hadn't been crying, Brian could tell instantly. He said he would leave work for a family emergency and to hang tight till he got home. I stayed in my room and called April (God bless her) so I wouldn't feel so alone and scared and sad, and she talked to me until Brian got back and prayed with me.

Apparently Mom had collected herself and was prepared to go on about her day when she heard the garage door open. She was completely taken aback that Brian was home. I came out of my room, still trying to stop sobbing, with puffy eyes and a tear-soaked face. Almost as soon as Brian asked what had been going on, Mom lost it. She got so very angry...she yelled and threw things and went to her room and slammed the door and just screamed and screamed and screamed. Brian told me to take Mocha outside and he went to her. I found out upon going back inside that Mom got so worked up that she couldn't catch her breath, and Brian was afraid he would have to call 911. She threw up twice and almost hyperventilated. She wouldn't even look at Brian for a while. It was, quite frankly, horrifying. That's the best word I can think of...totally and wholly horrifying.

Conflict begets conflict

One of Mom's main concerns was that my dad know when he hurts Mom, it hurts me too. It has a profound effect on me. After having such an awful, awful time and seeing Mom in such a horrendous state, I thought that maybe it would be a good idea to talk to Dad about what went down. I called him and asked if I could come over to talk to him. We set up a time about an hour later, and I met him at his house. I am way too tired to recount all the words that were exchanged and the manner in which they were spoken, but I will say that Dad doesn't care. He doesn't care that Mom's upset, he doesn't care that I'm upset, he doesn't care about anyone but himself. He didn't even try to listen to what I had to say; instead, he only wanted to get his point across and villainize Mom. After about half an hour, I couldn't take it anymore. I was trying to help him understand that Mom is not the same person she used to be, and he didn't want to hear any of it. I just got up and headed toward the door, telling Dad that I love him but I can't do this anymore; it's too hard.

Caught in the aftermath

When I got home, Mom was sleeping and Brian met me at the door so I could, yet again, cry on his shoulder. We had a long talk about what Dad said to me and how I feel and what happened with Mom and how she's doing. At one point, Brian just started crying.


I'm almost falling asleep at the keyboard now because it's been such a tiring day. There are more details that can be added in to the story of today, but those can always come later. My biggest take-away from today: if you've got to face a crisis, there's no one better to face it with than Brian. And we are certainly facing a crisis now...the woman we love is becoming someone else more and more each day. And now I'm going to go to bed before I crash right here. I welcome your comments and thank you for stopping by.

Monday, July 9, 2007

"If they left it up to me, every day would be a holiday from real..."

For some reason, I have a lot of lines from songs running through my head right now. Like the title of tonight's post...it's a line from a Jack's Mannequin song. And from Relient K: "Being apathetic's a pathetic way to be, but I don't care." Both of those lines capture the state I'm in right now. Numb, apathetic, wishing for an escape from reality...nice, huh? I've been running on overload lately. Blogging has been very helpful insofar as it allows me to get out all of my thoughts and emotions, but maybe it's also a bad idea because it makes me realize exactly what all I'm dealing with. Maybe I'm so unmotivated right now because I'm shutting down as a defense mechanism. I bet mental health professionals would have a field day with all my introspection.

"I wake up to find it's another four-aspirin morning and I dive in"

(That's a line from another Jack's Mannequin song, just in case you were wondering.) Today has been an odd and unhappy day. I really didn't want to get out of bed, so I stayed in as long as possible before I had to get up to go to lunch with Dad. When I got back home, Mom and Brian were outside in the pool. I thought about joining them, but then I figured I better get some work done for my internship. I sat down on the couch to figure out what I should do first, and I literally sat there for ten minutes unable to make up my mind. Should I read my book, or should I listen to training materials on CD? Should not have been a difficult decision. But yet, there I sat, and I pondered upon what I should do, and then I guess I just spaced out until I looked at the clock and realized that ten minutes had gone by. I sprung to my feet, a little frightened at my weirdness, and figured I better do something. I went into my room to listen to a CD my pastor gave me. Bad idea. Well, going into my room probably wasn't a bad idea. But shutting my curtains, turning off the light, and crawling into bed in the middle of the afternoon to listen to the CD were probably all very bad ideas. Within about five or ten minutes of turning it on, I was out cold. I woke up when the exit music came on at the end...the CD was 62 minutes long. I had slept for about an hour.

At about that time, I realized that Mocha had come inside with me whenever I went outside to tell Mom and Brian I was home. That meant that for the last hour, she had complete run of the house with no supervision. Since she is still just a puppy, we can't leave her unsupervised because she'll chew things up or use the bathroom inside. All of this ran through my mind as I realized that I had been shut up in my room...the thought occurred to me that I should get out of bed and see what she was doing. But as quickly as that thought came, I dismissed it because I just wanted to stay in bed. I fell back asleep until Mom woke me up for dinner.

This is bad. I slept for a majority of the day. When I finally did get up, I still didn't want to. And because I slept for so long, I didn't get done what I needed to get done for tomorrow. I really don't care though. All these things raise red flags in my mind, because I know it's not good to sleep so much, to want to sleep so much, to blow off responsibilities, and to not care about blowing off responsibilities. The red flags are not enough to motivate me to do anything about it though. This is really bad.

Alzheimer's everywhere

You know how they say husbands can have sympathy pains when their wives are pregnant? Sometimes I wonder if there's such a thing as sympathy dementia. I swear that I have picked up some of Mom's symptoms. Like today, I couldn't make a simple decision and I totally forgot all about needing to watch Mocha. Or maybe this is what they call stress.

The past couple days, I have been seeing a commercial for Aricept, which is the drug Mom is on for Alzheimer's. Every time I see it, I want to pick up the nearest heavy object and hurl it at the TV. Why such a violent reaction? Don't ask me. I really don't know. But I can't stand it! Maybe it's because the people on the commercial have grey hair and wrinkles, but my mom is young enough to be their daughter. Maybe I just hate being reminded of the disease while doing something as ordinary and escapist as watching TV. I should be happy, because Aricept is something that helps Mom and could help others facing the disease. The urge to be destructive is not very indicative of being happy, though, so lines are getting crossed somewhere.

Another week

Mom, Brian, and I sat down tonight to make a schedule for Mom to follow every day of the week. Brian has been on vacation since the 2nd, and tomorrow he goes back to work. I don't think Mom is going to handle it very well. She has gotten used to Brian being home for over a week, and now it's back to her being alone for most of the day. Hopefully the schedule will help her to stay focused on activities and keep her from getting too depressed. We'll see.

I have a meeting in the morning with my pastor, as I do every Tuesday, to talk about the progress of my internship. I don't want to go...I want to sleep. I have nothing to report, because I have done absolutely nothing of value in the past week. I fear that I am reaching the point of letting depression interfere with my ability to function on a daily basis. Especially after today when I felt zero desire to do anything except stay in bed, I am horribly afraid of what I am becoming. It's not like there has been some crisis event or something that has happened to upset me outside of just trying to deal with life...but it seems that life is getting too hard. My old ways of coping don't really seem effective anymore, and the things that usually make me happy aren't really cutting it. I have an appointment on Wednesday with Dr. Mowry (just me this time!) for an overall wellness check, so I am going to talk to her about my concerns. Maybe she will up the dosage on my antidepressant. Yes, that's right, I'm on medication for my psychological well-being. I used to not want people to know because I thought it made me defective somehow. Now, though, I am more concerned that people understand there is nothing shameful in needing a little help to balance out chemicals. No one berates a diabetic for needing insulin, so I see no reason why there should be a stigma attached to a depressed person needing medication. Sorry, had to pull out the soapbox for a few minutes.


I would apologize for another depressing post, but if you've become a regular reader then you are fully aware that this is probably what you're going to get. Right now, I guess I'm just trying to make it to Wednesday when I see Dr. Mowry and I'm hoping that she'll be able to help. Ironically enough, Mom is seeing two different specialists at The Ohio State Medical Center on Wednesday as well. Hopefully she doesn't get any news that would cancel out whatever help Dr. Mowry can give me. So now, I'm going to go do what I do best...make my room as dark as I can possibly make it, slip under the covers, and shut out the world until morning. I welcome your comments and thank you for stopping by.

Friday, July 6, 2007

"Reality Check"

Yesterday we had our family meeting with Dr. Mowry to talk about how to best support Mom. I anticipated it being tough...I had no idea it would practically knock the wind out of me. I left feeling physically ill; I really could have vomited all over the sidewalk outside of the doctor's office. So let's recap what led to that point.

Getting the story straight

Brian and I were both somewhat unsure as to what the exact content of our appointment would be. Dr. Mowry had suggested that we all get together after she saw Mom last week, so we showed up. Dr. Mowry began by saying that she wanted to explain Mom's medical history to me as best as she could, since it's confusing and she had yet to really talk to me about it. She said Brian could always use the review. So, Mom went into the doctor a couple years ago complaining of memory problems and stress, anxiety, and sadness in the workplace. They began looking into possible causes, and in the meantime she had her first seizure. This led to more testing, which led to the diagnosis of antiphospholipid antibody syndrome (APS), a blood disorder that thickens the blood and makes it clot more easily. They discovered that Mom had vegetation on a mitrovalve in her heart, and some of that vegetation had broken off and gone to her brain. This did not cause a stroke, as I had previously been led to understand. Instead, it caused a series of subcortical infarcts, which means that some areas of the brain were not getting enough blood flow. The blood flow problem messed with the balance of electricity in the brain, causing seizures which have since been regulated with medication. APS is also being controlled by medication, and the vegetation on her heart has broken down without need of open heart surgery (yay). However, the blood flow problems in the brain have caused damage resulting in dementia. This damage is irreversible. The doctors are also unable to predict to what extent it will worsen and the time frame in which it could occur. That's always fun to hear. The good news is, Mom has had no more subcortical infarcts and her blood levels have stabled. The bad news is, the dementia symptoms are progressing and Mom is having a hard time adjusting emotionally to her new limits. The neurologist started her on Aricept to help with cognitive functioning, and it is likely that he will add a second drug when she sees him in August. She is tolerating the Aricept fairly well, but still declining in abilities. So that's where we are medically.

Daily living

Dr. Mowry explained that people with dementia need two very important things to function well and best cope: routine and a feeling of control. She repeatedly stressed the importance of stability and sameness; any changes in the norm can cause extreme anxiety. Part of Brian's role and my role as family members is to establish routines and do our very best to stick to them under all possible circumstances. Part of Dr. Mowry's suggestions included making a calendar in which we plan a daily activity for Mom. It is very important for Mom to get out of the house everyday, and hopefully planning ahead and having it in writing will motivate her more to do things. Lately Mom has been kind of lost and uninterested in just about everything. The last time she started feeling well, she overdid it and now she has gone to the other extreme. We need to find balance by planning what she will do each day and for how long. Secondly, Mom needs to feel as though she has control over her own life. Obviously there is a loss of independence associated with dementia, but Brian and I need to allow Mom to control as much as possible.

The punch in the face

When Dr. Mowry began talking about the importance of routine, I had no idea what a blow I was about to receive. She had been talking to Brian and me fairly equally, but suddenly she turned her chair to face me and scooted until she was right in front of me. And then she said, "Kelsi, you being home right now is interrupting the routine. It is something out of the ordinary for your mom and it's causing stress. I know she loves you and she is very glad to have you around, but it's different than what she's used to. And once you go back to school, then that will interrupt the routine as well." So in effect, I am worsening my mom's condition by living in my own house while I am home from college. And when I go back to college, I will worsen it yet again. My unpredictable schedule is wreaking havoc on my mom's emotional well-being, and her emotional well-being is so intricately linked with her physical well-being right now that I am messing with that too. By helping out around the house, I am setting her and Brian up for a difficult transition when I go. Apparently I should have little involvement in meal planning, grocery shopping, and creating a routine because I won't be here in a few months.

I told myself I wasn't going to cry in our meeting no matter what happened. I seem to be training myself not to cry in front of Mom. Didn't work this time though. I was basically shocked when Dr. Mowry said all of that, and I felt as though it was a premeditated attack. It seemed to be one of the central reasons the meeting was called, because I guess I have unknowingly caused much stress for Mom by my presence and in my attempts to help and she couldn't tell me herself. Dr. Mowry assured me it's nothing personal, it's just the nature of life with dementia. My eyes welled up, but I held it back. And I held it back, and I held it back...waiting and praying for the meeting to be over so I could find somewhere to be alone and lose it.

But no...she asked if there were any questions. And Mom wouldn't let me not say something because she knew I was troubled about something. When I opened my mouth to speak, instead of words, sobs came out. I hated that I was crying...I didn't want to. I wanted to have control over my emotions and I didn't want to deal with it right then and there; I wanted to put it in a box to pull out later and sort through. But that was just impossible. So I tried to regain my composure, and Mom kept hugging me and grabbing my hand and telling me it's okay. For a reason still unknown to me, I inwardly cringed at her attempts to comfort me. I didn't want it from her. I didn't want her to hold my hand, and I didn't want her to cry with me. I didn't want her to touch me. I feel so ugly saying that...and I have no idea where those feelings came from. I don't know why I wanted to remove myself from my mom in those moments, but I very much wanted to. Am I an awful daughter? A horrible person?

So once I could actually talk, I managed to choke out that I was confused as to what my role is supposed to be. Am I not supposed to help? How do I coexist without messing up the routine? How do I behave now as to minimize the effects of leaving in September? We talked about some of those things, and Dr. Mowry did have some good suggestions. But I still don't feel as though I know what my role is anymore. I don't know how not to cause damage and I really can't do anything right.

The kick in the gut

Thankfully, the doctor forgot to write out Mom's prescription so she had to go back inside and wait to get it. That allowed me to wait outside and calm myself down. Then Brian came outside too, and we got the chance to talk. I was still fighting tears, and he gave me this hug like only he can (Brian gives the best hugs in the world). I thought it was for me...but then I felt him crying and I realized that he was holding onto me as tight as I was to him because we both need each other. And right this moment as I recount it, I can't keep the tears from falling. There is something so utterly heart-wrenching about hugging the man who is essentially your father while he falls apart. And again right now, as I am crying I also feel again as though I could throw up because I can't stand how much it hurts to see that kind of brokenness. I stepped outside of myself and I saw a man watching the woman he loves turning a dark corner and knowing that the future they planned together is never going to be a reality. And while I cry for myself, I cry more for Brian. They say a joy shared is doubled but a sorrow shared is cut in half, but sharing this sorrow with Brian amplifies it to an overwhelming magnitude. And so we cried. And we hugged. And we looked at each other with eyes full of words we don't know how to say, and we knew that from that moment on we can't pretend that this isn't happening. And Brian said, "We've just got to keep loving her." And with those words something in me screamed because I couldn't imagine anything more horrifically sad than the best man I know fighting so much pain. His tear-streamed face will be forever etched in my mind. He said, "I guess this is a reality check." That means that the heaviness is hitting Brian as it hit me months ago, and he can't deny it anymore. And I get a front-row seat.


I think the worst part is that there is no time out. There's no pause button or break time. Twenty-four hours a day, seven days a week, my life and Brian's life and Mom's life are different and we have to cope with that. Period. And I am just so very sad.

As always, I welcome your comments and thanks for stopping by.

Wednesday, July 4, 2007

Happy Independence Day...

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.