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?

Easter

I took an Easter basket down to the home place, filled with the usual holiday goodies, thinking that Mom, Dad, and Christine could share them. One look from Mom told me that wasn't going to happen. She took the basket and headed for the truck where she shut the door and started munching on her favorite, the Peeps. Because the day was fairly warm and we were concerned about her getting hot in the truck, Eric opened the door so she could get some air. She promptly closed it. He started playing with her, opening the door and she reacted by looking him in the eye and shutting it again. It was a losing idea, so we decided the obvious compromise was just to just roll down the window. She was so funny, with her deadpan look; she stared us all in the face and slowly began rolling the window up, watching us the whole time with obvious disinterest. When this was accomplished, she turned and faced forward and started digging through the Easter grass for the malted eggs. It doesn't sound funny now maybe, but it really was at the time. Dad, Eric, and I all laughed at her determination to be left alone with "her" basket. She surely would have had a sugar overdose, except that her hands are unable to unwrap chocolate bars. I think Chris and Dad may have gotten a couple of those, but Mom knew who the basket was "really" for, and she took it. :)

My mom always enjoyed giving us things at Easter, no matter how old we got. And now I'm carrying on the tradition and she will get her Easter basket, no matter how old she gets! I am pretty sure the world would be a better place if everybody gave an Easter basket to someone each spring and received one in return. :) I love you, Mom! Thank you for always remembering us at Easter!

"Sometimes Grandma Scares Me"

Those were the words of my son, who is 15. I know what he means. Mom rarely laughs or smiles or shows any type of expression. And sometimes she looks right through you with her eyebrows slightly bent and her mouth firmly set, and no kidding, it is scary. I've noticed it, but not said anything, but Eric has begun to get bothered by this look. The same week, Dad said the same thing. "I don't know whether she's goin' to kill me or what. I don't think she'd really do anything, but the way she looks sometimes, it scares the hell out of me!" I do know. And last time I took her photo, she was giving that, "I'm going to kill you," look when I clicked the button. I decided not to post it. As Dad says, "It gives me the 'heebee jeebies."

So, I told them both the same thing. I said, "You know Grandma, (or Mom), left a long time ago. We are taking care of her body, as kind of a memorial to honor her, but she's not there anymore. You are looking at flesh and blood only." I told them that people weren't meant to walk around in their bodies without their minds working. "We're not used to seeing that, and that is what makes it scary," I said, "Different is sometimes scary."

I continued to tell Eric, "You know.....someday.....something is going to happen to Grandma's body and it won't be good. I'm not sure what will happen, but it will. And when it does, it's not going to be that terrible of a thing. We have lost Grandma already, and we grieve. But this body that walks around like a ghost and sometimes makes very scary faces....it's not her.....and it's ok.

Long Time, No Blog

Well, what's to write? Days turn into weeks, that turn into months, and we just keep paddling and waiting. What we're waiting for nobody wants to know, but we wait and time passes.

I did take Mom to see the dress rehearsal of "Fiddler on the Roof" that Devri performed in this March. Mom has passed the point that she can sit still through an entire show, so we went to rehearsal, instead. When Devri was on stage Mom was very attentive. When she exited, each time, Mom decided to leave. So, in those small intervals when Devri was not performing, we walked. We walked around the auditorium. We walked back and forth in the foyer, again and again and again and again. We walked every row of chairs starting at the top and zig-zagging all the way down to the bottom and made the return trip from bottom to top. When Devri came back on stage we sat and watched, and when she danced with the Rabbi, Mom even laughed. Otherwise, though, she timed her exits to perfect synchronization with Devri's.

The following Friday, Christine took Dad up to watch the performance and I stayed with Mom. When I first mentioned the idea of Dad going without Mom, he was stunned that I would suggest it and then very depressed saying, "Don't you think Doris would want to go?" I told him I'd take her during rehearsal, but to think about it. "Mom might be ok, but you'll be a nervous wreck," I said. He responded with an "I guess that's so." So, he went with Christine and told Mom "goodbye" but I noticed he did not tell her he was going to watch Devri perform. He said, "I'm leaving for a while and I'll be right back." When he returned, he looked rejuvenated and like a very proud grandpa. It will be hard for him to learn to do things without Mom, but it must eventually happen. He cannot stop living because of this disease. But sometimes I think he wants to.

the good and the bad of it

The good side of Alzheimer's I have yet to see, but I am seeing plenty of the bad side. Mom no longer has any bowel control, and I don't say that as an insult because it's the Alzheimer's not Mom. She can't help it, of course. I think, "Maybe somebody reading this will have to go through this whole Alzheimer's experience, and they may as well know what they're in for. I'm not going to sugar-coat it." So, anyway....it's a bad deal, sure enough, and we're all doing things we have never done before and never really thought we could. It's kind of strange how you suddenly "can" do what you "must" do. It makes a person feel like they are stronger than they thought they ever were, somehow. Anyway, I was dealing with the issue last week and thinking, "Oh, Lord, this is SO bad! I really may die right here and now!!" Then I got to thinking. If Mom was in a nursing center and this happened, there would be no way that a nurse could possibly leave the attention of 20 other people and attend just to her. She would just be there needing help, and have to wait until no telling how long for someone to care for her. And suddenly I was so thankful. Mom needed care immediately and she got it immediately, no problem. That is just such a blessing to be able to care for my Mom in any way, at the very moment she needs me.

Right in the middle of this mess I'm so thankful and happy I could cry! So, maybe that's the "good" of it---not what the disease is doing to Mom, but what it is doing to all of us.

the funeral

Dad's brother, Norman, passed away just before Christmas and the kids, Mom and Dad, and I drove up to Adrian, MO for the memorial service. We had a real time keeping Mom down for the 30 minute service. The family was separate from the general population and the girls and I, (and my two nieces), kept charge of Mom while my Dad and brother sat on the front of the family section. Happily, we had enough space where no one could notice her getting up and down and up and down every couple minutes, and we also had a back door and took her out twice for a walk "downtown" while the service continued. She no longer follows simple commands very well at all. My "sit down" went largely unheeded, but she had to push herself out of the arm chair to stand, so I kind of pushed her off balance a little so she couldn't get up every 5 seconds, (and I mean every five seconds.) Once I got distracted and didn't get her off-balance fast enough and she was already standing before I even knew it. I held her at bay, but thought, "Oh, boy..." and whispered to her, "Now, Mom....you don't want me to put you in one of my restraints I use at school do you?" She laughed. (I actually do work in a school where I sometimes have to use restraining moves.) Anyway, I had one arm and was wondering what I was going to do if she decided to walk up to the podium, when Christine grabbed Mom's other arm and in one smooth move, forced her to step back which made the chair hit her in the back of the knees, she lost balance and sat. Christine whispered, "Now that's how it's done." I stood amazed. That girl knows what she's doing. Anyway, we made it through the service. That afternoon at the internment, she wanted to walk all over the cemetery, but that was ok with us. Everybody kind of kept an eye open for her, (and I mean everyone)---the whole family was distracted making sure she didn't get away. I think Christine took her to see my brother's grave site, I'm not sure, and I don't know if she had a reaction or not. I don't even look towards that part of the cemetery. It gives me a headache.

Anyway, Dad will sure miss Norman. They talked to each other on the phone each and every day. Dad even said, "I don't know what I'm going to do with this cell phone now. I don't have anybody to call." That's so sad. Dad has lost four siblings thus far---two just this year.

Merry Christmas!

My kids would have it no other way than to spend the night at Mom and Dad's house to celebrate Christmas morning together. And they said there would be a tree. Of course, Dad said, "I'm not putting up no damned tree," and of course, he lost--kind of. Christmas Eve Eve Christine brought home a potted plant that looked quite like a Christmas tree, and the kids decked it out. Eric, Dev, and I packed our bags, (and our turkey, and our stuffing, and, and, and) like we were off for a big Christmas journey to visit our relatives. Forty minutes later we arrived.

We've pared down Christmas a lot in the last several years, mostly so Dad won't stress out over it. Gifts are completely optional and generally very practical. When Mom was doing things, Christmas-time was a major "to do," but not anymore. We still enjoy it, though.The kids gave Mom three of her favorite things....a new hat, chocolate pudding cups, and a card that sang, "I want a hippopotamus for Christmas" every time she opened it. Dad got a corresponding gift of decorative cotton balls with bows on them, to wear in his ears when she opens the card 1,000 times/day. haha Also, Christine bought Dad a new watch. When he was trying to set his old watch for daylight savings time this fall, he broke the stem off and could not reset it. So, he took the new watch and put it on his right wrist, leaving the old one on his left. He said in the spring he'll look at his right arm and in the fall, he'll look left to tell the time. Snort! I bought him new socks and underwear---try to do this every twenty years or so. He said, "I've been thinking about buying some of those....." He's been thinking about it for over ten years, no doubt.

We all enjoyed watching the kids open their stockings with the little presents and candy packed in tight, and it was done---perfect. I fixed the standard fare of turkey, hot rolls, dressing, etc, and it was a warm, cozy, and easy-going day we shared.

Mom is having more trouble eating and we no longer take her out to eat because it gets pretty messy. The biggest problem is she eats with her hands and will not leave the food in her mouth. The food is in and out and in and out, and not for the faint of stomach. We can deal with it, but we save the general population the experience! But, on the bright side, she is not choking!

I don't know if this will be the last Christmas with Mom, but if it is, it was a very fine one and I wouldn't have changed anything. We laughed a lot and Mom let go of her dead-pan stare and laughed along with us for the moment. It's always so sweet when she does that.