Mom at Christmas

As you can see, she was very smiley and happy. Just as we did last year, my kids and I spent the night with Mom and Dad Christmas Eve. We put up a tree that night and Mom helped decorate it. She just smiled and smiled.

over-medicated

My job location has been moved an hour away just this month, which of course stinks from the view of cost and time wasted, but does give me plenty of time to call Dad every day and share the day's information. What can we think to talk about every day? Plenty. The dozen wild turkeys I saw on the way to work invoked a discussion of turkeys past and turkeys future and every thought either of us had had on the topic, while the finding of a calf that was missing for a day was a fifteen minute discussion beginning with the wheres and whens and ending with, "I remember when...." most often followed by hearty laughter. Dad is so funny when he tells a story!

One day's topic, however, was that of medication panic. Dad had received a letter from Mom's doctor that Dr. Yuhas would not accept whatever kind of Medicare dad had going on with her. Dad was extremely tense about the whole situation and was upset fretting that now he was going to have to find Mom a new doctor, and he'd want to run all these tests, and the cause of the most anxiety: he couldn't get Mom's prescriptions filled. Long story short, I fixed the problem with one phone call and Dad acted like I had performed a miracle second only to the parting of the Red Sea.

But it did give me a chance to ask, however, "What kind of medication could Mom possibly need?" Thus began the list. He said, "She has a pill for cholesterol" to which I said, "She's weighs around 125 pounds, how high can her cholesterol be?" Then there was "She has thyroid medication" to which I wondered, "What happens if a person's thyroid is messed up?" The kicker was the "She has to have her estrogen pills." I said, "Estrogen pills? Why would she need estrogen pills, for heaven's sake?" And then he said it....."She has to have those estrogen pills or she'll act crazy." I paused to consider if I had heard correctly before I said, "Not meaning to be rude here, Dad, but how much crazier can she act?" He thought for a second and said he guessed I was right. I shook my head and smirked. I talked with him about, "What is the goal of Mom's medication?" If it gives her some comfort or lessens her anxiety, sure, I understand that. But if it just prolongs her life.....is that really what we're trying to do here? He guessed not and sighed. The medication issue starts the whole day off on the wrong foot with Dad thinking Mom must have her pills or the sky will fall, and Mom refusing to swallow them, instead spitting them out and hiding them in peculiar places. It ends up being a major daily battle and Dad's nerves are shot at the end of the ordeal. I thought, "Why is he doing this?" I called the nurse. She agreed with me that we should continue to try to get as much calcium in her system as possible, (she does fall on occasion), and suggested we keep her on some sort of nerve pill, that she's been on for quite a while, since she used to get scared when she was hallucinating. Other than that, although she couldn't really say that the other pills were unnecessary, she did state, "I can see why you would want to do this. If it was my parent, I would probably do the same." I took that as an affirmation that was enough to get Dad to calm down about it. Dad is old school, of course. He firmly believes that the doctor is always right and to veer off course of his orders would be certain ruin. I introduced the idea that one could tell a doctor, "I would rather do something else" or "I don't think that's that would be the best idea for me because...." It was a foreign idea. Thankfully for him, he has good doctor and the nurse is fantastic. She spent 20 minutes on the phone with me answering every question and talking about Mom as though she saw her every day. In a world of ineptness, I am happy to say, this nurse is not a participant!

worth 1,000 words

I had to include these two photos of my brother, Allen (Joel), and my mom the last time he came to visit. I think they show exactly the emotions we are having right now. The second photo demonstrates, I think, the feeling of anxiousness. What is she thinking? What is she feeling? What can I do?

The top one speaks of helplessness sometimes, and complete boredom the next. Not that we're bored of Mom, certainly, but we are getting bored with Alzheimer's--the slow regression that it is taking Mom through. We are bored watching the disease take its course, bored with the weight loss, bored with the lack of expression, bored with the continual trying to think what we can do to help her, and bored that the answer is "nothing."

The picture of Mom is just what it is. I think she is bored with it all, too! :) There is no such thing as pointing a camera at her and saying, "Smile." She smiles when she feels like it and she doesn't when she doesn't. Ah, to have that freedom ourselves! :)

gettin' along and gettin' around

I had a real dilemna trying to figure if I should take Mom to see Devri's latest performance in "The Rogue's Trial" at the college. It was held in the "Black Box Theater" which is indeed a black box, very intimate setting, with the stage in the middle and three sides of bleachers around. In other words, difficult to sneak in and out of unnoticed. Chad insisted that we give it a try because he wanted Dad to see her, so he arranged that we sit on the front row, (which is the same level as the stage), and we were five steps from the exit. I was convinced that Mom wouldn't stay seated for more than 30 seconds. I had plans of taking her to Sonic and then everywhere else I could imagine for the duration of the play. I did agree, grudgingly to Chad, to give it a try however. I was on red alert. The front row of the "Black Box" means a person can actually reach out and grab an actor if you so desire. I was hoping that would not be something she would try.

So, we arrived exactly as it was time to be seated because waiting is not something Mom does. I had a change of clothes for her and my purse was well packed with Fruit Loops I planned to feed her one-by-one to keep her distracted. I sat to her right with my left arm around her shoulders and my right hand or her knee every alert to every movement, so I could stop her immediately if she decided to leave. I had several concerns, since I had already seen the play before. First of all, there were bugle blasts first thing which I was afraid might make her jump. Also, there was a robbery and several people "shot" in the show. I thought, "What if she thinks it's real and freaks out?" What would she do when gunshots cut the air? How would she deal with actors running right under her nose constantly where we were sitting? Needless to say, I was on edge. I had Chad take Dad to sit away from us. Didn't think both of us needed to be anxious.

Amazingly, my fears were allayed. She sat like an angel the entire time, not trying once to get up. When guns were shot and everyone in the audience jumped, Mom didn't. She blinked, but she did not flinch at anything. She mostly watched the audience and I don't believe took notice of Devri particularly, although I pointed her out. At this point, we take Mom for Dad's sake. He doesn't want to leave her behind, and he wants to believe that she enjoys going. Perhaps she does, I have no idea. It was a success, though. At the end Devri came and spoke right into Dad's face to let him know she saw him, and he was tickled.

weight

I've mentioned that Mom isn't eating, but I haven't blogged how much weight she has lost. She is at 143 right now, (that's a 50 pound loss plus a little.) I originally thought this was the beginning of the end because if she refuses food, that's just the way it is. Then yesterday when I saw her she downed a Jr. Whopper, an egg, a piece of sausage, a biscuit, a glass of milk, a few handfuls of animal crackers, and a container of pudding, so who knows? Maybe she's changed her mind about the not eating thing. ?? She hasn't lost any weight for the past two weeks.

Eric stayed with her on Wednesday while Dad was working in the field. He fed Mom pudding, washed the dishes, and generally hung out. He didn't have long to watch Mom, however, because a sudden rain storm chased Dad out of the field after only a couple of hours.

I'll blog if something changes and Mom starts losing weight again. I have started going down there nearly every day because it is hay season and Dad needs the help. For people who are used to seeing Mom's usual "buxom" self, it's rather a shock. She looks very old and so much thinner these days. But, what can you expect, really? She still gives nice hugs. Too bad she can't see how much weight she has lost---she's been wanting to lose weight for years!

I will say that Christine, my daughter who stays with Mom and Dad, and who is on a one month hiatus in Costa Rica, has gained weight and color and is looking great! I'm glad she is getting a break, (she and her sister), and is having a good time. Care-giving is hard work!

shiner

Yeah, Mom has one. Dad called me when I got back from Chicago to tell the tale. He said he was on the baler and expected Mom so sit in the truck. (Insert sigh here.) She evidently decided to take a walk up the driveway and when he found her she had fallen and hit her face and bent her glasses. Evidently, she could not stand up on her own, but sat up on her knees, seemingly unphased, and waited for him to come by and set her back on her feet. He said that Conna, the neighbor, had "doped her up" with some antibiotic ointment and she was fine.

Two things worried me about this call. First, if she had fallen and not received any marks, he probably wouldn't have told me. Secondly, if he took her to the neighbor to get "doped up" as he said, he must not have known exactly what to do. So, ASAP, I went down there to check the situation out myself.

Upon entering the house I said, "Ok, Mom....let's see what you did," and turned her face to me. There she was with an eye as black and blue as the ocean at midnight. She smiled and her eyes twinkled as she ran her finger across her blackened cheek bone. Obviously, she was impressed with herself. She then ran her fingers down to her knees to show me she had also lost a little skin there. Her glasses were scratched and all caddy-wampus (is this a word?) I said, "You and Dad have been into it again, I guess." She chuckled and again, appeared pleased with her wounds.

If Mom was the type of grandma who sat on her porch swing and did needlework, I might have gasped or exclaimed something. But we all know she's not. My mind went back to her telling me everytime we got the sewing machine out, "You know, one time I sewed right through my finger, nail and all!" She seemed to joy in the "cringe factor." And 1,000 other times I've seen her tell people, "Yeah, that steer came right after me and right before he got there, I put my hands on his head and pushed away. Look at my finger!" She would hold up the finger she broke in the process, all healed wrong, curved and permanently deformed. It was a small bone, she figured, so she just popped it back in place herself and continued to load cows. Another story went, "This cow was coming after me and hooked one horn under my rib cage and lifted. Look at this bruise!" She'd lift her shirt to reveal a bruise that covered 50% of her body. (She did have to see a doctor for that one.)

To my mom, getting work done faster and better than anyone else was where the glory was. The tougher the job, the better that "wonderful sense of accomplishment" was supposed to feel, (so she told me.) But when a person could do this same difficult job while sustaining a substantial injury, that was just icing on the cake! And so, I looked at her eye, and I looked at her smile, and I saw a twinkle of pride in her eyes, and I said, "Yeah, Mom....it looks good. You're a tough old bird, but next time, I think you'd better work on that landing." So we chuckled together and I was just about as happy for her, as she was for herself.

Not eating

We had a graduation dinner today at Shoney's in Neosho with three graduates together at once. Christine graduated from MSSU, I from Pitt State with my Master's, and Jessica Behrens, (my cousin), received her pharmaceutical degree in Omaha this week. The easiest way to manage was for me to sit with Mom, constantly making her sit, while Christine grabbed a plate for her at the buffet. When she returned, Mom ate so little. Her appetite has been quite good up until this time. She has eaten everything she sees and we've had to watch that she didn't eat so much so as to get a stomach ache. Lately, Dad has mentioned several times how he can't get her to eat, though. Today, I saw what he meant. If I were being generous, I'd say that she might have eaten 100 calories....about a dozen bites in all, and that took me working with her and sometimes feeding her myself. She has lost a whole lot of weight just since I had last seen her, (which was two weeks as I had been out of town last weekend.) Christine also had a look of worry. She said, "Is it our fault that we're not making her sit down and eat? I even bought her pudding and she wouldn't eat it." Poor thing. I assured her that it was not her fault at all and she could not make Mom eat if she didn't want to do so. I said, not meaning to be cold, but I don't know how else to put it, "Her body will decide when she wants to stop eating, and then she will stop drinking, and then that will be all there is to it. You cannot do anything about it. This is the disease and this is how it works. This is 'normal', Christine, and it's ok." She gave me a "What do you mean it's ok, are you crazy?" look. Poor baby. She's so sweet, and so determined not to let this happen, and there's just no way. She's fighting a losing battle and is not at the point where she can accept it. It makes me want to cry that she is trying so hard not to let it happen. Youth. She graduated from college this week, she has succeeded at everything she's put her hand to, she is full of energy and enthusiasm and optimism and a belief that she can "take care of" any problem that comes her way. But this is that hard life lesson where she must be made to realize that we are, indeed, mere mortals, and in the end, death wins. I learned this at age 14 when my brother died. It's a horrible secret, that I wish I could keep from her forever.

I believe in life after death. I have faith in God. I believe He knows all things, sees all things, and is always just and fair. I believe that my Mom is in His hands and I can have peace knowing that He will "take care of it" although we cannot. How could I carry on in this world without believing this? How does my dad manage?