"All I get is to lose my mind!"

Mom seems to have stopped buying dog toys after repeated requests from Brian. Good news, right? Eh....no. This week so far, the FedEx man has graced us with his presence four times, bearing a grooming brush and de-shedding solution, a book, a bra, a fancy water bottle and neoprene case from Switzerland (I'm not aware of any cross-country cycling trips we're planning to take...), and two more books. But no dog toys!

I called Brian at work to make him aware of the latest delivery. It sure is a good thing I can call Brian at work...we have some of our best talks about Mom that way. I can't help but feel awful for putting more on his mind and interrupting his time away from home by bringing up problems. Invariably, though, whenever we try to talk at home Mom gets irritated that we're talking about her. I often feel like I want to protect Brian from dealing with the issues that come up with this disease...I hate seeing the pain in his eyes...but I'm realizing it's not my place. It's got to come from him. Mom kind of snapped the other day saying, "Stop telling me what to do!" I guess I do try to tell her what to do a lot...and a lot of the time it seems necessary. But she's not ready to be parented by her daughter yet. Brian told me today that while Mom's handling of finances is a problem, it's not my burden to bear. I knew that already...but hearing it really helped me actually believe it.

Brian said he's been trying to get Mom to sit down and take a look at all of their financial information for a couple days now, but she has been purposefully avoiding doing so. He said this weekend, they are going to have to have a talk because they really can't afford a lot of frivolous purchases. Hopefully, when Mom sees the big picture of how all her orders add up, she will realize she can't keep shopping like she does. That doesn't seem very likely at this point though. If she's avoiding talking about their financial state, then she knows something's not right. Mom has always handled all the banking, during her and Brian's entire marriage. This is a tough one for Brian to deal with because he's never had to worry about it before. He told me he doesn't want to have to take away Mom's credit cards and access to accounts, but if he really has to then he will. Mom seems to have lost all concept of the value of money.

We went to the neurologist this past Tuesday. Brian and I were hoping it would be a really informative appointment...that we could find out about the rate of progression and maybe what we can expect for a little while. Brian thought maybe the doctor would perform at least some simple in-office memory tests to get a handle on how she's doing. This was the first time Mom has been back to this doctor in six months, since the original diagnosis. The doctor was in and out in ten minutes. I could have choked him. He simply asked how the Aricept seemed to be doing, to which Mom replied a very quick, "Really good!" Mom mentioned that she was a lot more anxious all the time, so he suggested talking to Dr. Mowry about upping her Effexor. He ordered some memory tests to be administered on September 11th, then he was on his merry way. I know I don't really have a right to be mad at him...I suppose he's doing his job as he knows it. I'm more angry with the medical field in general. It seems that doctors throw out a diagnosis like this, and then care absolutely nothing whatsoever about how the family and the individual are dealing with it. He didn't ask a thing about symptoms or coping or adjusting to life in the past six months. I guess we'll find out more after this next round of tests. But I feel like I'm always saying, "we'll find out more after..." Like life is spent in a perpetual waiting for more solid information but it never really comes, so we eke out an attempt to incorporate this new vague thing into our lives. Sigh.

Last week, we went to the hematologist. In addition to Alz, Mom has Antiphospholipid Antibody Syndrome (APS), which is an autoimmune disorder with a high risk of blood clots. The doctor brought up the possibility of having a blood infusion which could knock out some of the antibodies, which could allow Mom to get off some of the medications she is currently taking. The treatment would take six hours and be done four to six times in that many weeks. The same treatment is often used on cancer patients and comes with some high risks, so the doctor is still consulting with his colleagues to see if it's a feasible course of action.

I tell that story in order to set up the following one. We went out to eat after we got done at the neurologist. While we were eating, Mom said that if she gets that treatment, then she could get a makeover from a local salon and they would give her all new makeup. Brian and I asked her why, and she replied that they do that for people undergoing chemo since they have to get rid of all their makeup. We tried to explain to her that it's not chemo, she wouldn't have to get rid of her makeup, and she probably couldn't get a free makeover. She got agitated and complained, "I don't get to ride a hot air balloon; I don't get a makeover; all I get is to lose my mind!" Sad moment. As to the hot air balloon ride, Mom would absolutely love to ride a hot air balloon. She told me one day that we should call the people at Make a Wish Foundation and see if they would give her one. I had to explain that while her disease is chronic and degenerative, it is not terminal. With Alz, it's all the downsides and none of the perks.

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

A spoiled puppy and a sour daughter

Mocha, our chocolate lab puppy, has 35 toys. I just counted them. She also has two brushes, a car safety harness, two leashes, a crate, a dog pillow, four different varieties of treats, two different kinds of shampoo, and three food/water dishes. We have a problem.

You see, these days Mom has been buying dog toys on the internet like it's going out of style. Just about every day, the FedEx truck pulls up with another box from some online pet store which Mom has ordered. The first several times, Brian and I thought, "Unnecessary, sure, but harmless." The several times after that, Brian asked Mom to please stop buying things for Mocha because she doesn't need any more. The several times after that, Mom started lying to Brian about the fact that the toy Mocha was prancing around with was new (apparently either forgetting that I was home when the packages arrived or thinking I wouldn't tell Brian the truth). We have a problem. On top of Mom's decreasing financial savvy and recent tendency to forgo truth-telling, Brian thinks Mocha is going to develop canine ADD because every time she walks into a room, there are at least ten toys there. Ha.

And now she's home (Mom and Brian were away visiting Grandpa). She walked in the computer room and asked what I was doing. Having opened another tab when I heard her coming, I replied that I was checking my email. She took one look at the computer screen with my email log-in page and said, "No you're not; you're writing things about me." Then she walked into the hallway, stuck her rear end out in my direction, and let loose a big one (thanks, Aricept). This woman is not my mother.

I knew there was a reason I always wait until everyone is asleep before I blog. I welcome your comments and thank you for stopping by.

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.

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!

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.

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.

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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.