And We All Fall Down

Sandwich Generation

2008-09-11T17:04:00.003-05:00

I'm beginning to truly understand and grasp the full meaning of this expression and I think my head is going to explode with the pressure of it.

My mother totalled her car yesterday. With no way of getting it replaced. We only have one car. When something goes wrong with ours, we borrow hers. So her car is our back up car.
We were a bit concerned with her totalling the car and it being our back up car.

Our son has a rotten driving record and we've not been able to get him his own car. (he's buying it, but but we have to take him to get it ... and we've not had the time or ..well ...we've just not done it.)

My husband is sitting talking about how much trouble we're going to be in if Samuel wrecks our car again. 3 times in the last 6 months he's wrecked our car. 2 times seriously.

He has bent the frame 2 times ... $1000 a pop! (yes, he's paying for it, but paying our credit card back)

He'd also jammed the door closed that was going to cost $600 to fix, but we were getting the $2000 paid off before worrying about getting the door fixed.

So, Don is talking about how much trouble we'd be in if he wrecked the car ... and the phone rings ....

Dad .... it's raining ...and someone cut me off ...

he hit the concrete barrier on the free way ... it took him 15 minutes on the phone to admit he was sitting in the ambulance.

He's bruised ... he's shaken ... he had a fireman's witness that a car did indeed cut him off ..and he was not ticketed.

He doesn't get that he doesn't realize that he may not be legally at fault ...but he is RESPONSIBLE ...

He could have killed himself ..or someone else.

She doesn't realize that she could have killed herself ..or someone else ...

Teenager boys and elderly drivers ...

no wonder their insurance is so high!

Well ...

2008-09-11T11:24:00.003-05:00

Mom made the news! And it's not good news .... At least in my family fued going on I got an email before I found out on the news! (although I'd not know because they didnt' have video feed or say who it was).

She hit the gas instead of the break ... ran over a tree ... a bike rack and into a light pole!

totalled her car.

her airbags deployed.

She had slowed down enough to park ..and yet accelerated enough to plow over a tree, a bike rack and get the airbags deployed.

YIKES.

Thank GOD there were no children in her pathway!

She will not have enough money to replace the car, so she is carless .... no more wheels. So we do not have to take away the keys.

*whew*

If somehow, she gets restless and tries to get another car, I will get the keys, by hook or by crook, I will. She's already not talking to me over my niece, it can't get any worse.

Long time since posting

2008-09-02T10:31:00.002-05:00

I didn't realize it'd been so long since I'd checked in.

I got busy with the month of August! The month flew by before I even knew it was over.

A friend got married on August 8th and had asked me to sign for her wedding. I've been exposed to sign language my whole life. My father taught at California School for the Deaf in Riverside before I was born and until 1972. I was taught to sign and say the alphabet at the same time. (very early since I was reading at age 3).

I grew up knowing the essentials in sign, I had a deaf cousin that I can remember talking to in Portland and having real conversations with when I was all of 8 years old.

However, my real love for sign, and becoming fluent/conversational was when I was 15. A young woman moved to Pueblo where I was living and came to our church. She'd just moved there from having gone to Christ for the Nations in Texas. She was an interpreter for the Deaf and Lorrie taught a bunch of us young teenaged girls sign language. We hung on her every word and sign. She taught us not only the signs, but the ins and outs of interpreting as well as artistic sign.
I considered Lorrie, not only a friend, but a mentor, both in sign and spiritual as well. To Lorrie Sluder, I owe much.

So, my friend met me about 8 years or so ago, and decided then that I'd sign at her wedding ...when she met the guy she'd marry.
So, here we were 8 years later and I'm signing ... however, I rarely sign anymore because I have tremors and my coordination is not what it was.
Thankfully, the tremors, while worse than normal that day (not so much by the wedding since I took my medication an hour before the wedding rather than at bedtime) were visible, they did not seem to be so much visible to the average person to interfere with the artistry of the sign. FOR ME however, it felt weird, and disrupted my concentration. It was difficult and I found the signs difficult to do. After to close to 30 years of signing without thinking ... that is a hard pill to swallow.

I think, I've gone into retirement with my signing, my friend, got the last song. I didn't think she understood how hard it was, till she asked for a wedding picture with me and her, and with tears in her eyes, she thanked me for doing it, even though it wasn't easy. Ok, so she did ...so I'm so glad I did.

Then, was getting myself and my 18 year old ready for school! WOW .. what a process!

We have finished the first 2 weeks. The first week knocked me off my feet. The computer let me into a class that had a math pre req that I'd not taken and about scared me into dropping out and quitting.
Instead, I dropped the class ...and to keep my full time status with financial aide I'm taking an 8 week computer concepts class starting in October.

I'm in Developmental Psych, Humanities and Algebra.
Having never had algebra ... EVER EVER EVER not even in high school ...this has been an interesting quest.
My instructor is having a ball with me. He is great with personalities and has me pegged.
When I started struggling with the "BUT WHY'S??" (which is what got me when I was 14 and my refusal to TAKE algebra to begin with) He started to laugh and said "um, you were a rebellious teen weren't you?"
I responded with : Nope, not at all, not even a little bit.
He looked at me with a horrified look and said "OH NO! REPRESSED REBELLION!"

We both laughed and are having a good time. We're about the same age in a class full of kids ...so it's kind of fun to have someone to identify with.

My humanities class ..oh let's not go there. Shudder. Suffice it to say ..if you think you have a flake for a professor ... NEVER EVER GOOGLE THEM you will find more than you want to know!!! That, and she thinks the sonnet I wrote for an assignment was a 'great sonnet' ... YiKES ... took me 5 minutes ... I'd never written a sonnet in my life and I promise you it is THE worst poem I've written in my life! Making me question her taste in art (it's on my regular blog) I expected the full credit for the assignment (5 points) however I expected a 'funny' or a 'good effort' or the like ...not GREAT SONNET! eeghads!

Developmental Psych, I had to write a paper ... and I got a 100% A on it. Grade is posted on my online grading system, haven't gotten the paper back yet, so no feed back. Anxious to see what she has to say.

Family life ...which is what this blog is supposed to be about ...has been somewhat chaotic ...and I'd planned on catching that up, but this has already taken too much time and it's now time to get ready for school.

Suffice it to say, my sister is no longer talking to me, the relationship may have gone beyone reconcilliation. My mother is under her 'spell' and has betrayed my niece in a possibly unrepariable way ... and nothing on those lines is good. We are at the stage of a lawyer involved and possibly getting a protective order involved.

However, my niece is blossoming in her growth as an independent woman and learning the truth of what her rights as a woman both in God and as a person truly are. I'm so proud of her. She's under the good care of friends of mine who are helping her in ways I'd never imagined. They've taken her under their wings ...and now, we've formed a new family.

Guess, sometimes you can choose your family.

Picks, not much of a choice.

2008-07-29T01:14:00.002-05:00

So, it looks like we have an answer. Picks disease.

So many things, have fallen into place ... the MRI's showing brain atrophy (why we've had three over the last 6 years showing increased atrophy, with increased white spots (I should remember what they're called, but I don't) and they keep telling me it's 'normal in the aging process ...we don't normally see it this young, but it is normal.'.

The lack of ability to control her inibihitions (ie ...the post on the sunday with the worship pastor's wife ...following me around church, interrupting like a child ... lack of social skills) lack of control of general behavior ...

Her inability to relate to someone else pain, and how it only relates to her. The seemingly increasing selfishness ... it's all listed as symptoms of Picks.

I've been stalling for several days to write this. But tonight I found out that ...she gave my son a $20 graduation present in the form of a check, then told him to not cash it ..AND borrowed $100 from him to cover bounced checks.

This makes month number 7 that she's bounced her checking account. Source number 10 or 12 ..lost track of it ... that she's borrowed from to cover those bounces ...

He tried to make me feel guilty for asking him not to do it again. How can I help her if I can't HELP HER?

Helping her in secret like that isn't really helping anything!

Somethin's gotta give.

I lost a friend this week. A dear friend. I blogged about it on my 'real blog'.

I am making an effort to make sure that my friends know how much I care ... and that nothing goes unsaid or undone as it did with this precious friend.

2008-07-17T21:45:00.003-05:00

Several years ago, a very good friend of mine, and her husband built a huge house in a very nice neighborhood. Their children were fully grown, but they built a 6 bedroom house with an attic big enough for 2 families. A game room, a sewing room (my friend is a seamstress) and 2 offices (one for each) formal dining room and informal dining room ... it's HUGE ... our chuch had a party there once and 162 people came and it didn't even seem crowded.

They weren't throwing their money around, or bragging about their success ...they had a plan.

People get into trouble and need a place to stay. Sometimes for a few days, sometimes for a few months, maybe even a year or so while they get back on their feet after an abusive marriage, a death of a spouse, or something life changing like that.

Someone needs tending to after surgery but has no family ...they have the room and the means to do so.

So, they broke ground on the property and that day ...my friend and i went out to their house and walked the broken soil that had no building or foundation yet .... just a bunch of tape showing where the bottom floor rooms were going to be. She and I together prayed for all the people they'd be able to help.

She is also my prayer partner ..when something *needs* prayer, she's my first go to person, and I her. As good of friends as we are, we're not really into advising each other ... we spend a lot of time laughing, sharing ..and we pray for each other.

SO, when the issue with my niece came up, i called her and told her "Pray". She was on her way out of town ... but when she got back into town and done with her continuing education class, we got back into touch. She asked me when she got my niece.

That's what the house was built for ... issues like that. She was ready to take her that night. Um ... let me breathe here. ;o)

SO, a few days later, I took Niece over there to discuss it, and instead R took her on a tour of the house, told her she got the pick of the rooms, and the game room was hers for the use with her friends.

A week ago Monday, niece moved in with her ...and she feels like she has a home for the first time in as long as she can remember. My friends are introducing her as their serrogate daughter (including when introducing her to their own children!!) and when my friends husband called to get some tech information because the wifi wasn't working in his 'daughter's room.

I am delighted beyond belief. They've gone to extremes to give her not only a place to live until she gets married ... but they are making her part of her family. (I need to remind them, she was my niece first ;o) )

My niece is thriving in her independence and a beautiful, responsible young woman thriving in her new habitat. I do miss having another female around ;o)

School ... I'm registered, classes set, I've gotten into Voc Rehab to see if they help to make sure that I can get a few extra bit of help (like not taking tests on scantron sheets ...so difficult with double vision) and I've talked with the disABILITY resource person at the college. I told her I 2 diseases, one fairly common, one she's probably never heard of. Lupus and Myasthenia Gravis.
Turns out that she knows about lupus professionally. She has an Aunt with MG. Go figure.

(for such a rare disease, I swear I keep getting professionals who have relatives with it!! ... A surgeon's wife, a pulmo's mother, a psychologists mother and her twin sister, a previous therapists grandfather and now the resource counselor ...statistically ... that's gotta be strange!!!)

(Although, the therapist with mom and aunt ..was a referral because of her understanding, so that wasn't a coincidence, and the pulmo was ... I Was friends with his mother through the MG Foundation, she found out I was in the hospital and she demanded he go check on me. He asked to consult on my case and has been my doc for 15 years since)

Hubby's doing ok. He's excited about me going back to school, and it's inspired him to return to his own working on some home therapy ... he'd kind of gotten feeling like it was useless ..not making progress so why bother ...besides prognosis was so bad ..why bother. If the nerves are dead, they won't return so why bother?

Well, in the last 3 weeks, he's gotten enough dexterity back in his hands to button his own jeans. That's ... major! He did some plumbing today ...
He'd been told that dexterity was gone forever ... it's now back to a degree ... and well ... he's now working to improve rather than waiting for it to take over.

The set backs of working too hard, then spending the next couple of days ... that's hard ...but we both have lived like that for longer than I can remember. I run 90 to nothing till my body gives up and forces me into bed. (that happened yesterday, I thought i was up to going back to errands etc, went to the library and wound up coming straight home)

Now if we can get my youngest son's teachers all on the same page with his special education modifications this next year .... I've got the special ed director on my side ... so ...and in a district with a great reputation. There were things in his IEP that were not supposed to be there (THey are not on my copy) and one thing that was supposed to have been added that never was ... not that any of it mattered because none of it was followed.

My son has a 10 year plan ... I told the special ed director ...that they have to help, they have to do understand that his academics are far below his social skills ... and that they need to understand ... it's not typical for a 16 year old to have a 10 year plan ... and anyone that is that focused ...deserves THEIR best!
She agreed.

Stunned, Flabbergasted ... And all that entails

2008-06-26T17:36:00.002-05:00

Ok, so those who care for my mental health .. and physical health ... have frequently tried to get me to take a step back from my mom's health care.

My feeling is that they don't quite *GET* it.

They see the stress it puts me under. They see that I have Myasthenia Gravis and Lupus and have a husband with health issues and to them ..it's case closed.
Pk has a healthy sister ...let her take care of the mother. End of story.

With all that has gone on ... and over the last 2 months ... I've listened to those who care for me. I've stepped back ...and in the last 2 weeks with the family chaos, been shoved to the back seat.

I've just had a HUGE shock.

While I've been letting my sister take the lead on caring for my mom ... and letting my mom make decisions that she's claiming she's able to make ...

I just let my mom's health be put at a HUGE risk.

My mom fainted in December, and their best guess ... TIA.
She has right sided weakness ... but it was hard to tell because of the severity of weakness due to Post Polio syndrome.

She's had a hip replacement and a knee replacement.

The weakness and balance issues caused by the issue in December were SO severe that she's been on a walker since then. The physical therapist graduated her to a cane in late May. Her first foray with a cane was my sons graduation. At which time, she fell.

In the fifteen months, she's had NINE falls ..yes .. NINE .. in those falls ..she's broken a total of 8 bones. 2 bones in her hand, one in her wrist, 2 ribs and a chip of bone off her knee and 2 fingers.

So ...what has knocked me off my kiester?
My brother in law brought the van to my niece (they borrowed it to help my mom move) at 11 pm last night. He told my husband about all the stuff she has that is just plain junk. (Mom is a horder, like her mom and sister). Then said what made it so very hard wasn't all the junk, but hauling it all *upstairs* ...

EXCUSE ME?

Mom has a second floor apartment?!?!?
On stairs ...with an outside staircase ..that will get ICED over during the winter ... and because it's a retirement home, not an assisted living, they are not required to salt or clear walkways.

No lifts, no elevators ... just a staircase .. a cement bouncing ground for her to fall down when she is weak ...or unbalanced !

Who in the WORLD allowed this. (besides myself?)

Yes, I'm feeling rather responsible. I stayed totally out of her moving, and I did it on purpose. I did not have anything to do with her getting a new place, or choosing an apartment ... or when she'd move. I did leave it up to my sister to help ...throughout the process.

I tried to force my sister into stepping up to the plate in helping to care for my mom. This, is what it gets me.

Today, my PCP referred me to a GI for evaluation for an ulcer ... you should be inside my gut right now. It's seizing up tighter than fort knox! If I had any doubt that it was an ulcer before this moment, I don't now.

I called my mom and said "SECOND FLOOR?"
"Yes, it would have been another 2 months before they had a first floor available"

AND????

(rent is identical to where she is)

"I wanted to get moving"

Then I asked the question I never should have asked.
"How are you going to afford gas to get to and from church when you couldn't afford it when you lived 2 blocks from church and where is your closest grocery store?"

"The closest grocery store is 2 miles from me. I figured if I couldn't afford gas I could ride with you."

"Mom, if I didn't have room in the car for you, your walker, Don and his walker when you lived 2 blocks from church, how am I going to have room now?" (our car rides 4 ... we have 4 in our family ... she also moved 3 miles the opposite direction from church..so it'd be 6 miles on our gas)

"oh, well maybe you could take the boys and Don to church and then come back and get me?"

"Mom, driving makes me tired, and you want me to drive 8 miles to church, drop the guys off and then drive 11 miles to your place, pick you up, then drive 11 miles to church, drive 11 miles to drop you off and then drive 11 miles to pick up the guys and then drive 8 miles home? And who's going to stay at church to keep it open with them while they wait for transportation?"

"oh, I hadn't thought of that."

" Besides, there is still the issue of the walkers if you take it to church. Don doesn't take his remember, but it's still in the car if he needs it. If you take yours, then he's forced to take his to make room for yours. That's why I arranged for transportation for you when you couldn't drive."

"oh"

"speaking of which, has the doctor cleared you for driving more than 2 miles?"
"no"
"And so you moved clear out of town"
"yes, I liked the apartments"

"how far is it to the grocery store?"

"2 miles"
ok
"How far to the doctors?"

"well, she just moved, so that's not an issue"

"Mom, I've got the same group of doctors, they moved right across the street from where they are"
"oh, didn't think you were staying with them."

"how far?"

"10 or 12 miles"

And it was how far?
5 miles

So you've moved 11 miles from church
12 miles from doc
2 miles from food

and 10 miles from your closest friend ...

"But I like the apartment"

"BUT IT'S ON THE SECOND FLOOR"

"but I like the apartment"

"keep your cell phone with you incase you fall " ...oh, and call Debbie first"

I didn't say that last part ... I oh so wanted to ... but I didn't. Besides ... look what letting my sister take the lead got me. A mother in a second story apartment. (which by the way, I can't climb the stairs to ....)

Responsibility

2008-06-24T18:41:00.002-05:00

Not sure how coherant this will be, I've got a migraine going, I'm trying to get thoughts out while they are spinning around ... hoping that will take some of the pressure off my brain.

If you read this, then come back and it's different, you'll know I edited it post migraine. ;o)

I have watched my mom over the years make decisions I didn't always agree with. The choices that she made, I found not quite ...shall we say "tasteful". My mom and step father taught me to make decisions based on my morals, faith and beliefs, and that regardless of the consequences ..even if there might be some negative consequences (short term pain, financial cost, social cost or other wise negative outcome) you MUST stand by your prinicipals.

I was raised to believe that who a person is is seen in the times of pressure ..that when everything is stripped away ... they will still stand for who they are and what they believe in ... that is the meat of who they are.

However, from the time my stepfather died when I was 14 ... I've seen my mother compromise for her comfort on many occassions. It's hurt to watch her agree to contracts at work for better pay even though she didn't like moral clauses in the contracts. I have seen her make compromises with neighbors and ...on a couple of occassions, I've seen her dismiss her faith, to make things easier with a coworker.

So, I've known that what was drilled into me, didn't get practiced in her. I've known this, but it still never ceases to amaze me when I see it.

I TRY to write it off as part of the dementia type behavior, except ... that it started to happen when I was 15 ... shortly after my step father died.

I understand it, to a degree. My mom was a victim of some of the worst childabuse that I can even begin to explain. My grandmother, was absolutely evil. Emotional and physical, psychological and social abuse was meted out to my mother every day of her childhood. The emotional abuse continued to be handed out to my mother until the day my grandmother died in 1993.

That kind of abuse damages a person ...and who they are ... it changes what they can tolerate. I get that ... I really do.

Me getting it, is probably why I've never said anything to my mom about any of this. I've tried to gently keep my mom from compromising when I know that those compromises ..will each and every time do nothing but hurt her in the long run.

Each time she does it, she thinks the short term comfort they bring will be the benifit, and each and everytime they do nothing but bring pain. (which has served to let me know why we have to stand by our principals firmly, regardless of the short term losses and pain)

The frustrations I'm feeling at this point ... is with the conflict of my family.

My mom is moving ...and my sister and her family had planned on helping my mom to move. My husband and I because of our issues in health, can't do it.

My sister ... with all the emotional and spiritual superiority that she had to mete out over my niece decided to take it a step farther ... and lord it over my mom. My mom, who had been so compassionate for my niece, who'd seen the pain my niece was in, who had seen the wrong ...who had seen the absolute twisting of scriptures that my sister and her husband had been using to manipulate their family ... was told that if she supported my niece ...would get no help from them in moving.

If she talks with us, if she has contact with us ... she would get no help from them.
She (niece)must listen to them, and believe that my 22 year old niece is under their authority and must abstain from physical contact with her boyfriend (fiance) until marriage. She must agree with them that she must stop rebelling and come back under the family fold.
And my mother must support my sister in this foolishness ...or my sister will withhold all support in helping my mother move as well as any future support as an elderly parent. She will cut off future contact and she will be forbidden from seeing her other grandchildren (ages 6 and 16)

She must now consider if she is to stay at her church (we go to the same church) of 10 years. Because she is not supposed to stay in a relationship with the 'person' who helped the rebellious daughter.

Excuse me ... I AM this PERSON ... I am her DAUGHTER ... you are asking her to DISOWN her own daughter.

They have not disowned their daughter, they are infact, still including my niece in family dinners and actually helping in the move out. They've participated in some sabotage to try to insure that she's going to return with her tail between her legs which won't happen ...

but, my family is persona non grata for helping her daughter in this 'rebellion' and we are to be treated as such.

My mother, has compromised to allow it.

I'm upset that once again, to make life easier ... instead of going to the church and saying ...I need help moving, and to wait till things settle down (and they will, they always do) to see her other grandchildren ...she's given into this blackmail ... she took the easy road ... to take what serves her purposes.

I'm furious that my sister has chosen this path to blackmail my mom. I think it's a low blow and in a way, in a very big way, it's a form of emotional abuse.
I hope my sister is prepared to handle my mom's medical care ... because she's just blocked me out of the picture.

I guess, for the time being, I'm out of it.

My responsibility ...for now, is lessened.
(??? not really ...because I'm not that type of a person
what will happen, is that when I see the doctor on thursday, is I'll be telling her that she's being manipulated by my sister ... I'll tell my self I'll stay out of it ..and then I won't .... because I won't take the easy way out ... and I'll stand for what I believe ... and in the end, I've taken on the role of medical advocate for my mom
and she is
my responsiblity)

I think I can I think I can I think I can

2008-06-21T18:06:00.002-05:00

A few years ago I figured out I was the little engine that could. It is the part of me that keeps on going despite the lurches that hit me when the electricity that goes out in the middle of the night ...and doesn't come back on for hours. (thank you drunk driver for hitting the transformer! Do you realize that not only could you have hit and killed another driver, it might have been my son coming home from work ...but it could have been my husband on oxygen that you denied electricity)

I posted the following on my other blog about how I manage stress and keep from dragging the stress with me from crisis to crisis.

Tuesday, November 30, 2004

I have learned I am a ChooChoo train ......
I think I have figured out how I cope with things. I've been calling it compartmentalizing, but it's more than that. I have people who will come up to me a week or so after I've been sick, or after the boys have been sick and ask if everything is ok and I just give them this blank look, I've gone on, I have no clue what they''re talking about. Those things happen so much, once it's over, it's over ... I just say that I've compartmentalized it and gone on, and that's the best explination I've had ... but today, I came up with a better one ...

I'm a train and I have all these train cars that I have that I'm tugging behind me. Some, like lupus, MG, kids with TS are permanent, other's like flu and Bj's meningitis are temporary. When I get sick with the flu, the flu car gets coupled to my train, making my train just a little harder to pull, I need more steamto get to where I'm going. But when the flu is over, I stop,and uncouple that car and leave it behind, going on with my journey. The eating disorder car, that's probably a permanent car, but it's cargo has been unloaded, it will always be attatched, but the heavy burdened load it was weighted with has been removed, so now, it's just an empty car that I have to be careful doesn't get loaded up again.

I have to be careful that I don't keep going on my journey with train cars that don't need to be still attatched. If one is done, it's important to remember to stop and uncouple it, dragging cars that are no longer existing, is going to make my journey harder. (If I'm constantly thinking about how many cars of colds I've had this year, and not uncoupling them, I need to know how many I've had so my doctor's can take good care of me, but not dwell on them so to speak)

I also need to make sure that I have all the appropriate car trains attatched. So that my train is properly balanced. I have my church car, my family car and my friends car. When the journey gets hard, is it the tracks are going through mountainous regions ? or is that I have more cars attatched and are they permanent and therefore I need to figure out how to add more coal to the engine? Or is it that a temporary flu car has been added that will shortly be uncoupled and out of my way?

**********************************
Wednesday, April 18, 2007

Power
In the first month of my blogging ... I blogged about discovering that my life could be compared to a train ... and this week ... I came across a train on it's tracks and it made me think of life in terms of a train once again. I'd forgotten about my own life comparrison to a train. Until I decided to blog about it.

The minute I started to do so, my brain went ..wait? What did I say before ...

So, I found it ...Tuesday, November 30, 2004I have learned I am a ChooChoo train ......

I think I have figured out how I cope with things. I've been calling it compartmentalizing, but it's more than that. I have people who will come up to me a week or so after I've been sick, or after the boys have been sick and ask if everything is ok and I just give them this blank look, I've gone on, I have no clue what they''re talking about. Those things happen so much, once it's over, it's over ... I just say that I've compartmentalized it and gone on, and that's the best explination I've had ... but today, I came up with a better one ...

I'm a train and I have all these train cars that I have that I'm tugging behind me. Some, like lupus, MG, kids with TS are permanent, other's like flu and Bj's meningitis are temporary.

When I get sick with the flu, the flu car gets coupled to my train, making my train just a little harder to pull, I need more steamto get to where I'm going. But when the flu is over, I stop,and uncouple that car and leave it behind, going on with my journey.

The eating disorder car, that's probably a permanent car, but it's cargo has been unloaded, it will always be attatched, but the heavy burdened load it was weighted with has been removed, so now, it's just an empty car that I have to be careful doesn't get loaded up again. I have to be careful that I don't keep going on my journey with train cars that don't need to be still attatched.

If one is done, it's important to remember to stop and uncouple it, dragging cars that are no longer existing, is going to make my journey harder. (If I'm constantly thinking about how many cars of colds I've had this year, and not uncoupling them, I need to know how many I've had so my doctor's can take good care of me, but not dwell on them so to speak)

I also need to make sure that I have all the appropriate car trains attatched. So that my train is properly balanced. I have my church car, my family car and my friends car.

When the journey gets hard, is it the tracks are going through mountainous regions ? or is that I have more cars attatched and are they permanent and therefore I need to figure out how to add more coal to the engine? Or is it that a temporary flu car has been added that will shortly be uncoupled and out of my way? *************************************************************************************

So ... I've got that part figured out ...but what I failed to figure out was ...who and what is controling the engine cars? AM I the engine cars? Am I the engineer? Do I simply hire someone? Contract that job out? Or, am I the engine of the train itself.

The engine of the train, is in fact, it's most important factor.

Without an engine ... the train simply sits on the tracks ... doing nothing ... and going no where ... just sitting waiting for the cargo to be loaded or unloaded. Sitting there ... rusting ...useless in their journey. Their wheels cannot be used for what God intended the wheels to be used for, because the engine is not pulling them.

They sit ... quiet, and unassuming, apparently useless, maybe having had a use at one time, but now pitiful and with soemthing to be written off as potentially useful.

With the engine, the train can work ... in the coldest of weather, to work in the snow and the ice ...and in the lonely times. When others say it may not be the wisest time to go, the Engine gives the train the power and strength to go where it needs to go .. to keep the train on the track ... and to get to the destination, safely.

Sometimes a lonely, quiet steady job, but it will get done.

Then there are the times when it feels like we're never going to be seen or noticed again, the train engine, will for sure, get ALL the glory.

The maginficent engine ...and all it's hard work ... everything it's done to save us ... and all it's done to put help us ...to save us and to guide us ..to protect us and to lead us ... and we just want to be shown off ...just a little bit?

Would it really be such a shame for the train to want to be separate from the Engines every now and then? Is it really that important/ Do we REALLY have travel wITH the engine every single time? Why ... why can't we, as the train make it on our own ...just once ... we could give the credit to the things the train engine had taught us .

.. So I think ... tonight ... we are going to try .... to do things ourselves.

The train itself will move the heart and goals and dreams of the spirit along. Making sure that the callings of God and the work He's called us to get done. The train, without the Glory Seeking Engines ... will now be responsible for getting the body and the body's family to all appropriate functions. Physically and emotionally. This should be an exciting time in the New Eagler Transportation system!

What? ... What? ... you mean there is a problem? What? You've had all of a couple of minutes and you can't even get going? What do you mean you can't go? It's simple ... the back car has Nanna on it, she needs extra care and be transported to and from work. Get going! What? What? push it?
What?
we can't?
are you serious?
not even a little?
Well, get nanna to sit and take a day off.
Sigh ... prayer car ... what do you mean the prayer car is falling a part.
Yes, I agreed to pray for a certain number of people, Beths, house, and Melissa at college, Wanda, and Mom.
The funeral today ..what's the problem? What do you mean?

WHY do I need a train engine to pray? oh that just doesn't make sense! I'm going to have to come back to that one! I'm so frustrated, how hard can this be ... lets try to get the directions straight ... shouold we go this way or that way...the map isn't even clear!

There are so many decisions, Why is it when I'm reading this in the navigators car, it all makes soooo much sense????????

I'm going for a walk ......

The full train ... the engine .. it gives the train it's power ... the power comes from the Holy spirit ... it is the guidance needed, the navigation ... the wisdom ... The engines ... give extra power .... for the prayers to be powerful and spirit led!

The train .. .is all me, but cannot function without the fullness of the holy spirit ( the train engine) He is the one who enfuses my train with the power to be what it was called to be ... and is destined to be.

We saw a train sitting ... 3 miles from it's train engine ...and the engine just drove off ... leaving it's train sitting there and I thought ... no Lord ...please, don't ever leave me .... take me along with you. Infuse my train with your power. I am useless without you and I simply want to be your servent to do your desire.

Response to Contemplations

2008-06-17T20:02:00.002-05:00

I started to comment to Wendy and Femail Doc in the comment section, it turned into a blog post, so ... I moved it to a blog post. *grin*

Wendy thank you for your comments. The encouragement helps. I hope you're right about the helping getting through.

My 6 year old niece went into R's room while she was packing and was crying. Telling her she shouldn't move out ..she isn't supposed to move out till she was married. She shouldn't move to Aunt Peggi's and Aunt Peggi shouldn't be helping her.

All I could think of was how awful to manipulate a 6 year old little girl to do such a thing!! To put her in such a position! While I know she is heartbroken at loosing her older sister, those ideas didn't just 'get there'.

Maybe, when she's older, the idea that maybe I *should* very well have helped will be there.
Femail doc, yeah, it gets complicated. Ironically, it doesn't feel complicated most of the time. (which used to frustrate the daylights out of my therapist, she felt it was a form of denial, maybe so, maybe not.)

I think, there is enough laughter,

joy

and a place to vent

(blogs, my writings, prayer, faith etc)

to balance out the rough and weird stuff.

Add to that, I have very long standing friendships
... one goes clear back to 2nd grade, another to 4th grade ...
and SEVERAL from high school have been re established ...
as well as the support system I have in place here.
Not to mention good medical care.

Another thing that I think helps is expectations for life.
I don't expect it to be easy. I never thought I was 'owed' anything.

I've never had to say 'why me' but rather ..if it can happen to my neighbor, why not me as well. It's not a matter of placing blame, but getting through.

I also don't spend a lot of time in fear. What happens, happens. That's not to say I'm not afraid .. I have my moments.

I usually blog about them.

When they happen.

Then ... I go on with life ..

and laugh with my family

and don't let them take over.

When the electricity goes off and I hear my husband's compressor's alarm go off ... my stomach LURCHES.
When the electricity comes back on, life goes on.

When my mom can't comprehend what is going on, my heart breaks ... but I don't spend too much time dwelling on what will be.

I simply cannot live that way. It would destroy me ..and I cannot afford to be destroyed

Contemplations

2008-06-14T16:56:00.001-05:00

A week ago, we got a new puppy. The how is a bit complicated. She wasn't planned. But we love her. She will be very good for Don ..and I think we'll be able to actually train her to help him. (assuming we can train her to not chew on the oxygen tubing!!!)

I showed Mom her picture on Sunday ...then took her over to see Mom on Monday. Today, I mentioned her to my mom on the phone and my mom said "What Puppy?!!?? You did not tell me you got a puppy!"

I reminded her that I showed her the picture and brought her by on Monday and she got upset and said I may have showed someone else at the church picnic, but I totally ignored her. (not true) And that she hadn't seen me in 2 weeks, so there is no way that I could have brought the puppy by to see her. I reminded her that I brought the puppy by when I brought the check for the cell phones. She insisted that I'd mailed the checks. Nope, didn't do that.

Sigh.

So, this weekend, our family life will change dramatically. My niece, 22 years old will be moving in with us. My sister, probably will not be speaking to me for the rest of my life. She is furious with me for helping my niece in her 'rebellion'.

What I've learned in the last week ..is why I'm not getting help from my sister with my mom. Her judgemental nature and insistance that someone adhere to her strict standards ...is impossible. My niece is being disowned for the simple fact that, at 22 she wants to hold hands with her boyfriend. My sister, quite literally, called her a hypocrite, said she needed to come back under their umbrella of authority and 'regain her salvation' and that she because she wanted a 'physical relationship' with her boyfriend was subject to Romans 1.

In Romans 1, Paul was talking to the Jews who were participating in all kinds of sexual immorality, beastiality, sexual 'gifts' to idols ..and God said that he would give those to the lusts of the flesh. Holding hands with ones boyfriend comes anywhere near this level of sexual sin!

Even if it *did* this would be it would be between her and God, not her and them. (what happened to Romans 2:1 ..judge not, lest you be judged (or in a newer translation, the same measures that you judge others, is what you will be judged with, I do hope they are prepared!)

They have only allowed her to work part time. They limit her outside activities. They had told her she could not move out of the house until she is married.

Her very insisitance on being treated as an adult is, in their opinion, a rebellion. Her desire to go to Bible college was heresy. (women are in the home, under a man's authority, therefore it is unnecessary).

I am so proud of this young woman. Not only has she made a stand for her rights as a woman, an Christian, and an American, but she's done it with respect for her parents beliefs. Never raising her voice to them. She's done it, quietly and calmly, simply stating that she would be moving out, and making her own decisions.
When she decided that she would be making her own boundries with her boyfriend, she wrote out a contract with her boyfriend and gave them to her parents.

So much better than I'd have handled it (or did when I was asserting my independence).

My mom, heartbroken because her family has imploded, or exploded, or both, agrees, that she must side with her granddaughter, is worried sick about the 2 minors left in the home. Neither of us know what to do about them. Obviously, since they are not talking to me, and it will be questionable if they will talk to her or not ... what will happen to them. Will they clamp down unreasonably hard on the 2 left in the home (the 18 year old moves away to college in the fall ...16 and 6 year old still at home)

I am wondering if I should write them or not. My sister knows That I do not think she has any real authority over my niece. My niece should respect them, but she has no authority that she has to obey.

Chronically Ill meets Caretaking

2008-06-03T17:36:00.002-05:00

Each week, in the medblog world there is a phenomenon known as Grand Rounds. A Blogger cleverly puts together assortment of various and sundry entrants of the best of the medical blogsphere.

This week, Grand Rounds was hosted by The Happy Hospitalist.

I found one of my favorite bloggers at Grand Rounds quite a while back. ChronicBabe. Since then, we've become 'friends' on facebook as well as Twitter.

ChronicBabe is a website for those dealing with Chronic Illnesses ...but this blog entry is a particularly well thought out post for those who are chronically ill who suddenly (or not so) find themselves dealing with the issue of also caring for someone else who is chronically ill.

There is excellent advice in there. Some, I don't always follow it ..some I follow to the letter. If you are a caretaker this is a must read.

If you are a caretaker with a chronic illness ..this is a MUST READ.

If you have a chronic illness ...go take a look around Chronicbabes .. it's a nice time out of the day. Like chocolate on a tough day.

Chasing Song

2008-06-02T02:06:00.002-05:00

http://youtube.com/watch?v=1bPZL0ROC_E#

Now and then these feet just take to wanderingNow and then I prop them up at homeSometimes I think about the consequencesSometimes I don't
Well, I realize that falling down ain't gracefulBut I thank the Lord that falling's full of graceSometimes I take my eyes off JesusAnd you know that's all it takes
Well I wish that I could say that at the close of every dayI was happy with the way that I'm behaving
'Cause Job, he chased and answerThe wise men chased the ChildJacob chased her 14 years and he Captured Rachel's smileMoses chased the Promised LandJoseph chased a dreamDavid, he chased God's own heartAll I ever seem to chase is me
Well, they say a race can only have one winnerAnd you know you've got to pull out front to winGod knows the only time I'm winningIs when I'm chasing Him
Well I wish that I could say that at the close of every dayI was happy with the way that I'm behaving
'Cause Samson chased a womanand he chased the PhilistinesI'm not quite sure what Jonah chasedBut I know he caught the seaCain, he chased the harvestWhile Abel chased the beastsDavid, he chased God's own heartAll I ever seem to chase is meAnd Jesus chased the moneymenAnd he chased his Father's willHe chased my sin to CalvaryAnd he caught it on that hillSaul, he chased the ChristiansTill his blindness made him seeDavid, he chased God's own heartAll I ever seem to chase is me~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~A few years ago, I was in physical therapy with a therapist that was a christian. He and I were talking about how God seemed to be holding both of us to what we were learning in our Bible studies. It seemed, that we were being held to a higher standard than those of us around us. We wondered if it was to prove a point. One of obedience, surrender ... character. Being a witness for the name of God.
If we are going to declare ourselves Christian, and yet go around acting like slobs, using fowl language, complaining, speeding (breaking the laws of the land) and acting in ways that didn't separate us from anything else, then what really set us apart as a Christian? No wonder no one really liked Christians!
Shortly after that, I recieved TWO speeding tickets (like, within one week!!)
I happened to really like working out. Physical therapy to me was a lot of fun. I really enjoyed it with this particular therapist because we tended to talk about things of Bible studies, church, and things that were otherwise intellectually stimulating.
So, I would go ..and work out ...and really enjoy it ... until he'd make me do those dadblasted BALANCE exercises. I have awful balance. Lupus and MG have really destroyed my ability to balance, and he was determined to try to rebuild some of that.
So, we'd start to work on the balance ...and as soon as we did, I'd start to gripe and complain ..and moan and groan ...
well, shortly after we had the conversation of God holding us accountable for our behavior ... it never ever failed ... if my mouth started to be less than nice ... this particular song managed to find it's way on the radio within a sentence or two.
After about the third day, it made it's way through my consciencensss ... ok God. I get the point. Am I happy with the way that I am behaving?
The other day, after I'd posted the previous blog, i got into the car, and what was on the blog ...but the chasing song.
I know that I have to find a new way to respond ... I know that I have to find the appropriate way ... to find that balance in my response to mom. I wish that I could say that at the close of every day that I'm happy in the way that I'm behaving. I'm chasing myself in circles ... my balance is off ... the ability is there ...but God has the answer ...and in the long run, the answer is about HIM, and she is HIS child ...and that is where i need to be looking ...

:( Missing postt

2008-05-28T22:51:00.002-05:00

I hope to find the post and the song I'd posted in response to my past post ometime in the next day or so

Social Skills & the Sandwich Generation

2008-05-26T00:15:00.002-05:00

Today was Graduation Sunday at my church. An honoring of the graduates from those who were graduating from high school. Since my son was one of the graduates, it was his day.

After they were introduced, they invited the parents to come down to pray over the boys. It was very clear, that it was an invitation to the PARENTS, not the families. Each of the boys who graduated had grandparents in the congregation, but my son was the only one whose grandmother got up and came down with the parents. His eyes got wide open as she walked down. Nothing was said to her but the youth pastor quickly changed the invitation from parents ... to an invitation to the addition of other family and friends.

Thank you Ryan.

My son, afterwards tried to say to his grandmother "that was supposed to be a Mom, Dad and me moment" and my mom, with much indignity said "you're MY grandchild! I had every right to be there!"

We quickly dropped it and went back to our seats.

After church, our new worship pastor's wife went over to my son to congratulate him. I had not met her yet. She turned to me to congratulate me, and my mom came walking up. As Margaret congratulated me, mom said "thank you so much"
OK.
Then Margaret said "I heard you singing, you sing so beautifully!" Mom then responded with
"I made sure she was in choir, and got voice lessons"
(um, ok ... um, the voice lessons were a gift from a friend, you had absolutely NOTHING to do with those voice lessons!!)
Then, mom told her about my signing. She told her that she taught me to sign when I was just 4 years old. (um, ok, she taught me to sign my alphabet and Kumbya. But I learned to sign as a 15 year old from our church intepreter, that, once again, had nothing to do with her. I learned to sign INSPITE of my parents sign language skills, not because of.)

Margaret and I tried to carry on a conversation about worship ministry, as well as our names (Peggi is a nick name for Margaret, there is also another Peggy/Margaret in the church). But Mom kept interrupting and putting the focus on herself.

Then Margaret said that she loved to dance to worship, and that she wished that it was considered 'appropriate' in more churches (certainly not ours!!) That she could not wait to get to heaven to dance before Jesus. She considered sign a type of dance (as do I) in worship. (I do to, an acceptable dancing *grin*) We both agreed that it would be awesome to be able to be before the throne of Christ and be able to dance before our savior.
My mom interjected rather loudly
"I can't wait to get to heaven and have Jesus dance over ME!"

WELL GOOOD

that ended the conversation, rather bluntly and quickly. Margaret remembered she needed to talk to the other Peggy ... and needed to go. I think she was kind of shocked at mom's blatant need to pull the conversation to herself. Margaret hasn't been at the church but a few weeks, so she may not realize that mom isn't 'all there'.

I don't know how to respond when mom does this. How do you respond? What do you say? Do you just let it go and drop it? Do you try to calmly say "gee mom, this conversation isn't about you"
I have tried to politely let her know before that if I'm talking to someone to please let me talk.
I have at other times asked her to not follow me around the church and interrupt my conversations, that I don't get to talk to some of these people except on Sunday mornings and I talk to her almost every day. Please, give me some privacy.

Her excuse is "I only find out what's really going on in your life if I interrupt your coversations"

I feel like I should have more patience with her. I should be more gentle, more kind, more ...something!!
I am going nuts trying to be gentle, kind, patient and at the same time ... I don't know where the boundries of propriety, rights, and acceptable behavior are. When is it ok for me to say "enough, you can't cross this line"

If she wasn't loosing social skills, there is no way I'd tolerate this behavior. But, I have no earthly idea what she is comprehending and what she isn't? As I've said a dozen times before, it's like having a child. Her cognitive skills, social skills and abilities are all about that of an 8 year old ..and declining. Her memory is just now starting to go.

She is so demanding that she be allowed to behave in any manner that she choose. "I'm a human too" "I have feelings too" "You can't manipulate me like that"
are all things that are said if you try to redirect her behavior. she claims her therapist has told her this. I dont' know what to believe. He's also supposedly told her that there is nothing wrong with her but ADHD and OCD.

(which, her psychiatrist gets very annoyed with her insistance that this is the problem and her dependence on this diagnosis)

I'm exhausted with this confusion.

Thinking

2008-05-21T00:13:00.002-05:00

I started this blog because of issues in caregiving with my mom. It dawned on me that I'm also a caregiver to my husband. Since both his brother and his sister read my other blog. I will make this blog a caregivers blog and discuss concerns with both.

Given that both hubby and mom have post polio syndrome .. things may cross over anyway.

Given that hubby has some, as the pulmonologist puts it, brain issues, due to the respiratory failure he had last may, there are some things that are not indifferent.

Today was a bad oxygen day for Don ...and as he struggled to find words that he knows, I realized it. "Go ..bipap ..now!" (that was me, and yes, I said it like that) 2 hours later, he was no longer searching for words, nor stuttering (although the hard C seems to be a permanent stutter. I'm assuming since it hasn't gone away even for a day since he came out of the coma, and it has been almost a year ... then it probably isn't going away. It's been a year, and I'm finally able to use the word coma. Wow) and he could complete a thought ... it must have been the problem.

I want a dadgum pulse ox machine! Why in the h- e -double toothpicks isn't it covered by medicare/medicaid?! I'm sorry, but when someone has to be on bipap for 12 to 14 hours a day, and oxygen another 4 to 8 hours, a pulse ox should be standard issue!!! We should not have to go in for pulse ox checks at the doctors office!
I bet they've spent more in paying for doctor visits in the last year, or home health nurse visits to come check than it would have cost to pay for one!!!
It's absurd!!!

Last night, while on the machine, a drunk driver hit a transformer and we lost power. BANG! It was out. I reached for my cell phone to call the power company. It struck me .. how many people have the power company's phone number programmed into their cell phones? They got someone right out ... 45 minutes later it was back on.

They'd already noted it ... we're in their emergency program. It did us no good during the ice storm when all of Oklahoma lost power. We were out for a week. We found out then that oxygen alone isn't enough for Don. He got pneumonia because he didn't have the bipap clearing out his lungs every day.

I was just doing some research on restrictive airway disease. Kyphoscoliosis listed as a cause. yeah. 42% capacity ... and worsening scoliosis and kyphoscoliosis.

How much more twisting can his lungs take?

Essence

2008-05-19T22:53:00.002-05:00

I was watching the news and there was a son who was talking about the loss of his father. His dad died not from Alzheimers, but an unidentified dementia.
The news story was about his frustration on getting help, and a diagnosis.

I about fell off my couch as I heard him almost quote me word for word. He talked about the pain they felt about their father as they watched him not become their father anymore. The very things that made their father's personality, their father, slowly slipped away and he became another person ... first he lost intelligence, then he lost social skills, then he lost memory (exact pattern we're dealing with in my mother). Because the memory was not first, and his father had started out as a highly intelligent person, getting the medical community to take him serious, had been difficult.

I've been fighting that battle.

I so identified with this gentleman ... as he talked about his father not being his father anymore.

I said it a few months ago, and I have to keep reminding myself.

I will cope with this all a little easier when I realize that the essence of who my mother was, is no longer there. That the person who raised me, is gone. I have to stop expecting the person that is here to respond to me the way that MY mother would have. Because whatever this dementia is, has taken the essence of who she is away.

The thing that hurts the very most is that she while she is starting to loose some memory, and get some confused ... the memories that she is loosing first ...are the good ones. The happy times, the pleasant things. She's remembers the bad and the terrible ...and that is heartbreaking.

She remembers my father and how badly he treated her. But I have to remind her that she was married to my step father who brought her tulips because he thought she was prettier than they were, but they'd make her smile. She remembers my father critisizing her cooking ...but forgets my step father's planting her 100 irises ...

She remembers the pastor who abandoned our church to have an affair, but forgets the pastor who traveled from California to Colorado to be on our doorstep the day after my step father died.

She remembers the rejections and forgets the many acceptances.

She's had many rejections, and no one should have had to go through those. But she's had many joys, but she's starting to live in the bitterness of someone who has never had joy, and I've started to realize, it's because it's the pain that's staying and the love that's being forgotten ...

because the essence of who she is ... has been stolen by whatever this is.

Party

2008-05-18T07:18:00.002-05:00

We had my nephews graduation party last night.

As a family, we also celebrated my son's graduation. It was nice of my sister to include my son. (although, it would have been nice if she'd have told me. My husband would have come. He didn't want to go into a crowd of people he didn't know, but he would have done so for his son.)

Mom has diabetes and celiac spru. A sign of her declining social skills ... when she was diagnosed with celiac a few years ago, she'd kind of pout at family functions that she could not enjoy the foods that we all did. As time has gone by, she's made a bigger deal of this issue.

Last night, she humiliated my sister by going around the kitchen in a sing song voice going 'naughty naughty I can't have this! torture your mommy!'

Then, when the cheese cake came out, she went around and told everyone, including the little 6 year old kids that her daughters obviously enjoyed watching her not be allowed to eat "isn't that mean? I bet you'd never be a mean little girl like that!"

My sister tried to reign her in without humiliating her. In the end, it brought less attention to let her do her thing than to say something. The more she tried to say something, the more my mom protested it's unfairness. "I'm a human too! My feelings should be taken into account"

My father, with his new wife sat there like he was embarrassed to have ever been associated with her. That, just infuriated me. How dare he get on his high horse and declare someone that he knew to once be so intelligent and not only that he was married to, but he was proud to consider a collegue (as special education teachers ..he used to brag about his ex wife's accomplishements in the field) but now, as both of his ex wife's have declined he just washes his hands of them and acts as if he never knew them. Where does he think his children came from?

(my step mother of 25 years is mentally ill with paranoid schizophrenia, but he hardly acknowleges that he was married to her. When pictures of the florida fires were mentioned, my sister offered to show them to me ...they are within blocks of my brothers house, I said "That's ok, Jeani sent them to me." Dad said "who?"

gee Dad .. Jeani ... you were married to her for TWENTY FIVE YEARS!!!!!

I wonder if his current wife realizes how disposable wives are to him. )

I don't have a patient personality. I have can be very patient with children ...adults don't tend to get my patients. Learning to give my mom the patience that I gave my kids is really difficult.

The reality is, she needs the same kind of psychological 'parenting' that I gave my youngest son ... with his auditory processing disorder and his OCD ... that is the exact kind of issues that she is facing. She can't find words when she needs them. She gets stuck on issues and can't get off of them, she doesn't have the social skills any more to bring herself out of them and she cannot read people to understand what she is doing.

It is the same thing as when Benjamin would call a refridgerator a microwave and a washing machine a fence and the fence a dog. I grew to know exactly what he was referring to, and when he said he wanted to get milk out of the microwave, I'd simply say "ok". People would look at me like I was insane as he would walk to the fridge and get it, but he and I both knew what he meant. He'd say that the fence needed to go for a walk and I'd let him put the toilet (leash) on the fence (dog) and go for a walk.

I knew what he meant ... he spoke in what we called "Benjaminese" When the first of the second trilogy of the Star Wars movies came out, we went into shock as Jar Jar Binks came onto screen and started speaking in very clear "Benjaminese" We were the only ones in the theater not struggling to interpret the character on the first viewing!

It took absolutely no patience for me to deal with him. That was simply how he was. So why can't I transfer that same feeling and finese with my mom? Why do I fight this so badly?

There is also a part of me that wants badly .. to use some of the same therapeutic modalities that we used with Benjamin ... but Mom would first have to acknowlege that she hasn't always been this way, that it is more than ADHD ... and that there might be something there that needed therapeutic modalities.

And the Problem Is

2008-05-17T11:22:00.003-05:00

I tossed and turned all night.

Loosing the essence of who my mom is. The core of her personality. That is what is the hardest.

The missing words ... the delusions ... the forgetfulness ... I think I could deal with all of that. I might even be able to deal with the cognitive delays (is that what it's called when a highly intelligent person becomes less intelligent?).

But her total change in personality is what is so doggone difficult!

My mom has always been ...how do I put this gently ...self centered. She has NEVER been selfish. The distinction is important.

Selfishness comes with an inate purpose ... an intent to be that way.

SelfishSelf"ish\,
a. 1. Caring supremely or unduly for one's self;
regarding one's own comfort, advantage, etc., in disregard, or at the
expense,
of those of others

self-cen·tered

1.
concerned solely or chiefly with
one's own interests, welfare, etc.; engrossed in self;

The major difference ... the disregard of others. The 'advantage' etc. Being self centered rather than selfish ... is simply a self protective guard that many children of abusive and alcoholic parents often find themselves in. The fact that my mother was simply self centered and not selfish was in and of itself a miracle.

My mom was never ever mean. EVER.

Not ever.

She was, quite simply, one of the gentlest creatures I could have ever imagined. I'm not sure gentle is a word I'd have thought to have used 10 years ago to describe her. She's always been extremely uncoordinated because of her bout with polio. But her personality has been very gentle. Her inability to learn as a child, a severe learning disability, and unable to read until the 8th grade ... left her determined to see that no other child felt the way she had.

She got her degree in special education and became a highly successful special education teacher. A highly loved teacher. A highly successful teacher.

She went on to get her master's in education for the emotionally disturbed and worked in an institution for the emotionally disturbed. Working with middle school boys.

I cannot imagine a harder subset of our society to work with. Middle school. Boys. Emotionally Disturbed. Learning Disabled.

Yet she did it, for over 10 years. She won awards and so many of them I can't even begin to name them ... I know some of them were Who's Who amoung American teachers, who's who amoung American special ed teachers. She won awards in teaching for the emotionally disturbed and she began teaching/parent associations.

She was ... an incredible force in the educational field for both the student and the parent. Administrators occassionally found fault with her, but only because the parents said "Mrs P said the law says ..." and she was right. She stood up for the child. Her children in her classroom never ever failed to make at least a years worth of progress.

Professionally she was incredible.

She had the awards to prove it. She had the accolades of the parents and students to prove it.

At home, she struggled. She often didn't know how to handle a distant daughter (my sister) who refused to open up about any emotion whatsoever.

And as far as her youngest daughter (me) she was prepared for a whisper and got a tornado. The wave of emotions that started in infancy and just didn't stop until age 14 .. and then stopped all together ... she was totally unprepared (and unable) to deal with.

As young as 15 months old, I was holding my breath till I passed out just because I was told 'no'. Seizures followed. Scaring her half to death. But ..that became about her having a daughter having a temper issue, not about how to help a daughter deal with a temper issue.

My tornado behavior continued all through my childhood ... and she had no idea how to handle it. At 14, my step father ...her rock, the love of her life ... her absolute foundation ... committed suicide ... and I completely shut off all of my emotions ...to her (and to everyone).

She went from not being able to control me to not being able to get me to say 'boo' and instead of seeing it as an issue, she was, relieved. She still, to this day, does not see how this wasn't a good thing. How my shutting down and her relief of the matter was a problem.

I go through all that to explain the 'self centeredness' rather than selfishness. There was no malice in her in ability to see my issues. There was not cruelty. There was simply a relief in not having to deal with that wild tornado. Looking at it objectively I can get it. Looking at it as a mother, I don't.

HER MOTHER on the other hand ...was mean, and abusive, cruel. Physically and emotionally. If she'd been a parent today she'd have lost all rights. My grandmother was not only self centered but selfish. I wish, the stories of abuse were just through my mother, unfortunately, my sister and I, and all my cousins witnessed the emotional abuse, and to a degree, even some of the physical abuse. A couple of my cousins say they were physically abused by her. I was bit by her ... I'm not at all sure that doesn't fall into that category.

What I'm seeing in my mom now ... is so reminiscent of her mom. I don't know if it is because of what she was shown as a child, that it is what she is going to now?

I know that I have said over and over again, that she is like an 8 year old. Maybe ... she is behaving the way her mother behaved the way when she was 8?

She has lost all social skills. She doesn't remember them and it's hard to deal with. There are times I just want to scream "I know you know this! YOU TAUGHT ME!"

I don't know how to deal with the mean spiritedness. I don't know how to deal with the cognitive issues.

I really don't know how to deal with it when her psychologist supposedly tells her that she's ok, she just has ADHD. (we don't know this for sure, she says that he says this)

How can we help her when her professional tells her that she's not in need of help.

I do know I would have exploded yesterday had I not ran into my former therapist. It was odd timing to say the least.

In the beginning

2008-05-17T03:56:00.000-05:00

I need a place that I can blog about what is happening with my mom. Today, my blood pressure was so high that I don't know what would have happened if I had not accidently came across my former therapist. How she happened to just be there ... I dont' know. I thought they were moving her to a different place all together!

It started with mom calling to make sure I was going to be there to get her. A message on my phone ... "You better be here! I don't know what I'm going to do if you're at home asleep!" (I was already in the parking lot.) The tone of voice was rude and demanding.

As tired and sick as I've been, it didn't really put me in the best of mindset. Add to that the fact that I even had to have her car because my 18 year old had wrecked our car ... and it was not a nice place for my brain to be. To have her start off to call and start off with accusing me of not coming while I'm already there ... wasn't exactly a good start to the day.

She then says "Take me to Quik trip. NOW!"
Well, ok then, there are nicer ways of asking, but whatever. I ignored her and just did it.
My diabetic mother with celiac disease comes out with
a 44 oz of Mountain dew and TWO SUPERSIZED Recess Peanut Butter cups!!!

Mom!! You can't have that stuff! "Yes I can!" and her bottom lip stuck out like she was 3 years old, it started to quiver.

As we get onto the express way she screams at me to get over ... I quietly say "there is a huge truck in the way." then she starts in on telling me that if I ever get into an accident with her car like Samuel is doing to our car, I better have the insurance to cover it.

By this time, I'm ready to take her home and let her skip her appointment. But I know it's a $50 missed appointment fee. I have no idea what's gotten into her or why she's climbing down my neck for no reason.
I just know it's been a rotten week for me ...my dad's been in town, and that alone makes it difficult for me (it's never been an issue for her, but with her problems with what's going on, could it be now?) and with Samuel's accident, me being sick I just can't take this!

So then she calms down and thanks me for the ring. (birthday) she tells me she put some acryclic over it because her skin always manages to wear the cereal off of it.

I ... obviously have no idea what she means by this. I say "what?"

she says that her skin for some reason is hard on rings and rubs the cereal off of rings, and so she puts acrylic on them. I'm at a total loss. I think for a moment and put my previous skills as a mom to a kiddo with auditory processing disorder to work and think ...
why would she put on acrylic to keep from rubbing off cereal?
Maybe silver?

So I say oh the silver!
Uh oh! I should have played along. Would it have hurt to have let her believe that rings are made of cereal? really? Would it have, did she have to know she'd gotten the word wrong???

I didn't know I was walking into a BOMB...

"I'm 69 years old! Do not tell me what rings are made of! How dare you tell me that! I've been around for a far sight longer than you! I know rings are made of cereal! I know what I'm talking about. I've been to college, have my degree ... you couldn't even finish going to beauty school! I know that rings are made of cereal! How dare you try to make me look stupid!"

Well ... good ... paranoia, anger ... and confusion ...cruelty ...can we add anything else to the mix today?

Then we get to the issue of the car ... but we won't, because it's 4 am and I will do it at another time. Maybe when I can do so with a little less frustration.

So by the time we get to the psychologists office she's in a frizzy, telling me I'm mean, and I'm trying to make her feel guilty and I'm not different than her mother (who she hates, and was cruel and one of the most physically and emotionally abusive women I've ever met). Well, I didn't respond overly well to that. Although, I am not sure I did it inappropriately. I did tell her that just because someone is angry, does not mean they are trying to make you feel guilty or trying to manipulate you ...and they certainly are not grandma. Nor do you have the right to call them grandma just because you don't like what they have to say.

She didn't like whatever it was her psychologist said. He evidently told her that I was right on most counts ... not that it helped.

She continued to pout and say that we must have gotten ahold of him and now he is out to get her too.

Oh boy.