it never occurred to me

i have received information lately that would otherwise rock my world. My parents, although we rarely could be on the same page, did teach me to be a good person. It never occurred to me to take advantage of people. I have experienced several people who have forgotten how they got to where they are. Successful in this world but at the expense of someone else. I cannot fathom this. I will never be rich in this life, well probably not, but I would never use someone to get ahead. One of the things that I want in this world is to be validated for my contribution in this life. I know, some of you are saying... it will never happen. Perhaps not. But it would be nice. This is probably why I have been weary of people with money, how did they get it. I know in my life there are a few that have gained due to my hard work. But I have to let it go and know that I would never do that to anyone, and that I would rather have less in this life than to get "gain" off of someone else. And whatever I have that someone else helped with, I give them credit.

I never occurred to me to take all the credit... to take advantage of someone

Today mom had a BM all by herself, trust me it was a stinky one. However, I was so happy that she did it without "help". My idea of her not eating because she was a sundowner didn't hold up today. She did the whole, barely opening her lips thing again. This was at 3 p.m., totally daylight. Crap, what now. Roz suggested slimfast, this is the next thing I will do. I am so grateful for friends that have helped me with this.

I have sat with her and just watched her. Wondering what she could be thinking. Is it like some of the diseases that she has more comprehension than we really know, but can't react to it? Her words are becoming more and more babble than anything. Her emotions are random. Sometimes crying out, but I cannot console her. Not pain, just a painful memory, I think. I have done all that I know to make her comfy. So what is this really. I have not read all the ALZ books out there, but from what I have read, she is just doing what comes with the disease.

I have tested as well as I can, to see just how much she can see. Waving my hand across her face at 3 inches; with a reaction, elbows length; no reaction, and of course, arm length; nothing. Everything must be a blur to her.

Sometimes I use different pitches in my voice to see of she reacts better to it. Sometimes it works. Sometimes it doesn't. It just may be a crap shoot. All pun's intended.

Interesting day today.... otherwise I could say, bitter, party of one.

apple pie for dinner

it was after Thanksgiving and it's what we had, both of us. My test was the sundowner thing, however last evening she changed the rules again and ate with no problem. I'm sure there wasn't any recollection of WHAT she was eating, i think now it's only temperature and texture. OR perhaps she was glad to get it, but wished it were home made. She make the best apple pies on the planet, and most baking stuff too. She would make new things to try out and we would vote of the recipe would ever come back to the table. Although she wouldn't teach me how to cook, she would scoot me out of the kitchen, she did inspire me to BE a good cook. I know that I took it a step further and "dressed" the table as well. My children have taken it further and can eat something at their favorite restaurant or bistro and recreate it at home.

I bought one of those memory foam mattress's so she wouldn't get the pressure things as fast and it seems to work. Perhaps it is her size at the moment, she is not heavy anymore. One of the things I have control of right now is her comfort, or as best as I can provide it. This seems to be good right now.

so here's to apple pie and memory foam, other wise i could say, bitter, party of one.

sometimes the underdog really does win. for that I am grateful.

oatmeal wins

yesterday was Thanksgiving, she wouldn't eat, at least the turkey, mashed potatoes or cranberries. She puckers her lips and won't let the spoon in. It's the morning meal she seems to like, oatmeal. In real life ( the time before the ALZ kicked in) she loved oatmeal, so I knew it would be "safe" for a morning meal most of the time. I have sauteed spinach and added eggs to the pan and scrambled it. With a little feta, it was good. She ate it. The evening meal is the hard one. The oatmeal gets an open mouth, the evening meal is met the puckered lips.

She has a VERY strict health directive, DNR, no heroic measures and NO feeding tubes. Just moisten lips. So if there are any suggestions out there I'm all ears.

Oh and latex stills wins for me, the laxative added to the enema did their job and I cleaned that out pouring for two days. But, and I say that tongue in cheek, (closed mouth, for those who have cleaned that) she is now colon clean.

Remember the no talking game I wrote about before? Well it's another day of that game. Oh and that smile that she does, got that too! I told her I didn't want to play today. The first time I ever didn't play and felt ok about it. In fact I'm feeling ok about a lot of things these past few days. I had devastating news the day before Thanksgiving that would normally have sent me to a depressed coma. However, with the new me, prayer, self reflection and new self worth, I am ok. Ok because I spent the holiday with family. I would rather have the simple life I have now instead of the fake life I had before. I have love.

Other wise I could say, bitter, party of one.

hope floats

today i opened a letter that almost ruined my holidays. it's just my luck and always his timing. never courtesy on his part, never kindness, never thinking about the repercussions of his actions, he just does whatever, whenever, no regard to anyone in his path. I called my daughter, she was busy, I called my daughter-in-law, she listened. She made me promise that I wouldn't listen to anything sad, that I needed to have uplifting stuff around me. I have lots to do before tomorrow and the kids are coming here. Lots of "putting boxes away" (still).

I put on the movie, Hope Floats. It's got some bad parts true, but it always has words of hope through out. After words of encouragement there is some amount of tragedy. But in the end, the little girl says to her mother, my cup runith over. It was the last thing her grandmother said to her grand daughter before she died, expressing her love to her. I have my son and daughter in law and my grand daughter that live 15 miles away. I don't have the big house or property that I was scooted out of that I helped pay for, nor the income that we had, but I have something better. I have hope.

one of the many hardest things

the waking her up to change her position, I hate it. Yes it's physically challenging sometimes, but it's the knowing that she is so stiff and I have to move her. She moans. I know she feels the stiffness, like when we get out of bed quickly after a deep sleep, we take a little time to stretch. I have to make the decision on what the next position would be. I wish that I could know how to make her comfy.

the tears came today

for the first time on this part of the journey, I cried. While the tears are cleansing, I have always thought of them as a sign of weakness. This is what I have been taught, all my life. Although they have come so easy the last 15 years or so, they are from a different place.

I think it was yesterday that she had a really creepy smile, this followed a deep laugh that was scary. I thought that it was a first, at least the laugh part, but talking to my sister, it has always been there. The smile is something I knew. It's the kind that tells you that she knows something that you don't AND she won't tell you. It's as if that's the only time she has control. When or if she will give you the information, she keeps in sacred. I cannot understand what she feels, I never have, not really sure that anyone has. I don't know why her parents brought her up the way they did, but, they did. I mourn for your childhood. I mourn for mine.

I pray that I am able to help her in this last journey, care for her. Make her comfortable.

I have chosen to be here, otherwise I could say, bitter, party of one.

to know or not to know

today was another day at the spa. hair washed, nails cleaned, blow dry and fluff.

Then there was the laugh, can't tell where that came from. It was a strange laugh. I was struggling to get her back wedged high enough so that the dish pan would fit nicely under her neck so that I could wash her hair. You have to imagine a person on their back, very close to you, because you are the only way they can move. I struggle. And then the laugh. The direct look at me, which are far more rare than a blue moon. And then the laugh.

Because of her automatic push to do the OPPOSITE of what you need, she fought me all the way. The thing is, if I needed her to straighten her arm, she will pull it closer. I think that she has always been that way. I watch people and those who fight the most against everything, seem to have the most to loose. Not in the major things in life, the little things. The things that make life more pleasant. Why do people do this? Is this something that she really took with her in this journey into ALZ? Can she choose this? Or is it so a part of her that she instinctively goes to what she knew. I know ALZ is different for almost everyone that goes through it, but I really wish that I could talk to someone else who is experiencing this. I would ask how much of their personality did they take with them for how long. So many questions. But it's spa day, and it's my turn, otherwise I could say, bitter party of one.

distant day today

she slept in, at least that's what I thought. It was the pup's deep and loud barking that she woke up to. I watched her for sometime before she woke, is she just laying there? Is she just deeply sleeping this morning, is there a change today that she is entering deeper into the mist of ALZ? Changing her shirt this morning was harder than normal. She is stiff most of the time, however, as I have stated before, when she wants, she raises her arm with no effort and scratches the top of her head. Why can she do this with no effort when she wants. Is she so defiant even in this stage of little brain coherence where her life of recoiling to anyones touch still lingers.

This journey isn't just for me, it's for others that may be dealing with something similar. I tried to "google" others blogs about this, but as of yet, haven't found one. The interactions that I write are truth as I see them, not anyones else's truth. My mother is a product of how she was raised and I am who I am because of my parents. The difference is that I wanted change. I wanted to be better. I never in a million years would have thought that I would be taking care of her, but life being what it is, it seems to be the way it goes, other wise I could say, bitter, party of one.