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.

up to my elbows in PooP!

that may sound like a bad thing, however, it's really good.

1. mom had a blow out, after the laxative that I gave her FINALLY worked.

2. I watched JoRDan today 9 to 4:30, she also gave me a good solid poop

3. After worrying about my pup and the worm pills, he also gave me a big one.

with that being said, it's been a long day, filled with cleaning one "mess" after another and i'm happy

if it were any other day, i could be, bitter, party of one!! But it's great day, and just happens to be garbage pickup day in the morning, so the "dirty" stuff will be GONE!! ;)

a different kind of day

not much today on the feelings of being her caretaker. Just a feeling of overwhelming calm. It's my job I know, but, the feeling of really caring for her is different. I am reading the scriptures to her and I think that she can feel the emotion in my reading. I think there is solace for her in this as well as myself.

It was red potatoes and sauteed organic spinach tonight and she said UUUMMMMMM! She drank her herb tea like it was nectar from heaven. It was a good day.

It's time to make sure she is warm and as comfortable as possible. Tomorrow is another potty experiment and the new "memory foam" thingy for her bed. This is the only time that I can do anything substantial to the bed, while she is out of it (on the potty).

Here's to a good day!!! other wise i could say bitter, party of one

Oh and this is Princess Daisy Temperance, she liked mom and mom liked her.

a new journey for two

i just don't know how to say it, love the second time around is just as sweet. how do people stand it, JoRDan is my first grandchild and I'm on top of the world. How will it be with more.

funny how life turns out

not that life is OVER, it's just funny how the twists and turns take you in places that you never thought that you would find yourself. I am now taking care of the one person that did the most damage to me growing up. In the beginning, I wondered why in the heck I was doing this. The only answer was, she was my mother. I have to. The first two years were a constant fight, yelling, kicking, biting, and that was HER part. Mine was pushing her to do all the things that she had the ability to do. It would take 10 full minutes to tie her shoes, but with all I had read, as soon as an ALZ person stops doing the route things, they truly can no longer recall the ability. I didn't cut up her food, it took so much time to do anything, my spouse at the time, would do it for her. This counter acting all that I was trying to hold on to. Two years of that and she was failing fast. No longer able to walk upstairs to the bedrooms, she had to make the shift to a "home". That was June 4th. In April, two months before that, my husband asked me for a divorce. Drained from the caretaker roll and now failed as a wife, what would be next.

Why would I write all this? Background.

Today I must have said something wrong, she was playing the "no talking game". How do I know this? I asked. This was a game that was played all during my childhood. She would get mad at something, no one in the house really knew, and would speak not a word to my father, sister or myself. This game would go on for a little as 3 days to a week, to two years. So she remembered this game and played it today, well most of the day.

Why do I write this? The journey. I am writing to complete the healing process. Notice I said "complete". I started this path because of a great therapist, THANKS BETTE W. I have a way to go. This journey of caretaking and healing at the same time sounds a little crazy. Not something most would pair, but remember how this entry started. This is just one of the twists, other wise I could say, bitter, party of one.

date with the attorney

The move to AR denotes meeting with a new attorney. She was nice, I really mean nice.

Today was strange. She was oddly quiet. Dinner was chicken and spanish rice and homemade applesauce. But for some reason, her evening pills, perfectly placed in the sauce, were quickly expelled. This has happened twice now. OR she will chew the geodon, not good.

I have noticed that the particular selection of music directly effects her mood. I know this is proven time and time again, however it's supposed to be good. I mean the stuff that she used to love. I played gospel on Sunday, she LOVES gospel. But it made her so melancholy I changed the station. At least I thought it was melancholy. She was crying. I wish I could reach into her mind and give her some relief. Know what would give her solace.

I started this to share my journey, I am still writing it because I'm healing.

Cyril Connolly said, "Better to write for yourself and have no public, than to write for the public and have no self" With that said, if NO ONE ever reads this, i could say, bitter, party of one. However I really hope they do. I look for other folks who journal their path with ALZ, albeit, their own or as a caregiver like me.

spinach salad tonight for dinner

her body is still being uptight!!! i'm hoping that the spinach will do some work.

today she laughed, really laughed.

i'm getting into this new roll i have. it's still hard, but i read to her today. it was of benefit to me as well.

not much to say, not much on my mind today. i watched her for a long time today. wondering what she is thinking, IF she is thinking. she just lays there, looking at that space between what ever is in front of her and outer space. it came to me, it was much like deep depression. that void of life that happens. the mind working, but not working. no concern about what is happening around you. truly "in your own world". i can see it now.

it broke my heart really.

i signed up for this, i made her laugh today, otherwise i could say, bitter, party of one

the candy clause

When I had to go to court to become my mother's conservator, we had to go to an attorney. While there, he asked mom is there anything that you want to make sure that your daughter does or does not do for you. She paused for a moment and said, she never gives me enough candy. So making the moment even lighter, I said, so what you are saying is there must be a "candy clause". The attorney laughed and said that he wasn't sure that could be enforced, but then he added an offer of anything she wanted from the bowl of candy he had. She laughed. But still insisted that there be a candy clause.

Why am I writing this?? Today, I gave her a candy bar, Twix to be exact. I love them out of the fridge. And they said that she could only have pureed food, they didn't know Cleo. Other than the poop thing, she is doing well.

Oh, the poop thing is, she didn't "go" for far too long. So it's suppositories and latex gloves for me. Power to latex gloves. That was humor, if you can't tell.

Watching her eat the candy, you could say that she would say, thank goodness for the candy clause. I'm sure that she liked each bite, other wise she could say, bitter, party of one.

it's saturday, but it's early

i have to resupply the kitchen. Lucy, my neighbor is sitting for me while I run my errands. THANKS Lucy. Got to go. It was suppositories and waiting today.

Yesterday was a visit from JoRDan and Katie, it was wonderful.

Oh and the morning started with George Elliot, taking his part of a queen size bed, he still doesn't know what HALF means.

With a Dane that takes most of the bed, and a mother who needs to take a poop, i could say, bitter party of one, but what the heck. I signed up for this

Oh and THANKS, Aunt Roz for the outfit

another first

toe nails, enough said?

why would a "caregiving home" not take care of this?? I almost lost my lunch, cleaning, cutting and peroxiding her feet. One nail literally came off. Can I say fungus... and this was the good foot.

didn't know that the image would be this beg, sorry it's so graphic.

it's ok now (well mostly), other wise I could say, bitter, party of one

first potty experiment

totally did it, by my self. she totally didn't go. we're working on it. not as i type, just another time. the day isn't over.

the potty experiment failed, I did win the eat your meal contest. At the "home" where she was they said that she would have to have pureed food and thicken liquids. Guess what, she doesn't!!! Just needed time to chew and when her drinks are with a straw she is perfectly fine. The ONLY thing I haven't conquered is the BM %^) someone made a face with that, just shows I'm crazy.

With her legs drawn up a bit, not that she can't straighten them, just that she doesn't when others are looking. Same with her arms, they are mostly drawn close to her body, until she needs to scratch her head or nose, then they work well. I wish that I could get her to sit up straight. She wouldn't be on her tail bone so much. That, and the poop thing are my only concerns at the moment.

I have to laugh about the babbling (not at her, just the circumstances), I have decided that I can make up my part of the conversation and be fine. We have conquered many of the mother daughter issues this way.

So what I'm saying is, it's quite healing actually. If it weren't I might have cause to say, bitter, party of one.

long day

deep thought's today. I saw a red mark on mom's upper bottom, by this evening I saw just little red spot on the pee pee pad. Am I not rotating her enough?
I made kielbasa with rice and pineapple, she seemed to like it. Of course I ended it with a sausalito cookie, of course it was for her. Shame on you who thought it was for me.
We are going to try to put her on the porta potty thing tomorrow, wish me luck on that one. So far her eyes look better, her face looks better and I have trimmed her finger nails and got enough wax out of her ears to wax a Buick. It's the little spot I'm worried about.
How many bites does it take to chew oatmeal... if you are my mom, 40. Yep, you heard it, 40. My mother used to chew everything really really well and at this point she chews it to death. Yesterday it was french toast. Oatmeal is her favorite.

With the impending big day, I'm going to bed early.

At this point, day four, and I stole 2 hours yesterday (the neighbor came over) opened my checking account here in Arkansas, paid rent, shopped for groceries, stopped by the post office because I don't have a mail box at this time, and two other things I don't remember at this time. That being said, I could say bitter party of one, but there is humor at this point I just can't make it sound funny. But it is.

Really,

the day's not over

i just had to share. I just washed her hair, in bed, while she is hyper extended. Gave her a hot cloth on her face to prepare for the close shave that I would have to do. Now her hair is CLEAN plus a quick blow dry, followed by a smooth chin and upper lip. It was MY face that I would have paid to see. Although her eyes are mostly glazed over and with her double vision, somewhere in the maylay of a day at the spa, she looked at me, with scorn in her eyes, you know the kind only MOTHERs can do, and fear set in. Oh no, not hers, mine.

After this gift, and the ability to think for a minute, I think she gave me the "thanks" look. This was the moment that I thought, a few months ago, I would have said... Bitter party of one.

day two

it's now late on monday, and day two. I'm trying my best to get to know bloging and telling my story. It's amazing how stiff she is and only when she wants to can reach out and scratch her head. It's a mazing how there are things in their personality come out in this awful disease. If i only had today to compare to, and didn't see there are so many others out there going through what I am, i just might be, Bitter, party of one.

first day on the job

it's sunday and the first real day on the job. cleo is in the room and i'm adjusting. for what ever reason the dish isn't working so no tv.

i thought that writing a blog about life as a caregiver would help me and other caregivers share the ups and down of living with someone with ALZ. as a caregiver the relationship will be different depending on what that relationship is. she's my mom.

so here goes, a journey with so may others.