:( Missing postt

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

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

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

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

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

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

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.