My postings have become far and in-between--they are an indication of how much more attention my mom needs. As time moves on, she seems to move backward. Conversations I have had with other people that have gone through this with their parents scare me. They talk about a pliable stage or complacent stage. My mom is pretty submissive. She asks permission many times to do simple things.

"Can I close the toaster?"

"Can I have that bread?"

People tell me that this can be followed by a violent stage and I do not look forward to that. If I have felt like I have lost my mother when this situation began, at least she has always remained sweet and loving-difficult, but loving. I do not look forward to the time when that be lost as well.

There are fewer arguments and I think that is because I shifted my thinking and my perceptions. I see her now more as a child than my mother. There are things I discuss with her and things I don't. I don't give her as many choices, since that seems to confuse her.

She is more afraid it seems. She does not like to go upstairs even when she knows I am right downstairs. She sleeps with her night light on. Even when I go downstairs to use the bathroom, she is waiting at the top of the stairs for me to come back. It is still tiring for me to deal with that kind of behavior, especially since i have always lived alone for the most part. Again, my seeing her as a child makes it easier for me to be patient. I joke a lot more with her and it makes her smile (sometimes she says I joked too much and gets impatient). I love to see her smile at simple things like a joke--she is the mother that raised me during those times.

A big realization was she does not do the things she does on purpose.

This morning I asked her what she wanted for breakfast.

"Potato bread, cream cheese and jelly and toast."

We put the bread in and made sure it was toasted to just the right shade of edibility. She wanted to put on the cream cheese and jelly herself. It was raspberry preserves.

She came into the living room and we watched the news together while she ate. She asked me if I ever had cream cheese and jelly and did I like it. I said," I had it with I was younger. As a matter of fact, you used to make it for me!"

"I don't remember you as a child, you little brat."

There is a combination of sadness and happiness when she says that. Happiness because she is joking with me, sadness because she reminds me that she does not remember raising me, sharing plans, talks, etc. A whole life gone for her, but not for me. Somehow that is good and it is sad.

"Do you know why I wanted cream cheese and jelly this morning?"

"No."

"Because when I was a little girl and I went to school, all the rich spoiled kids would have cream cheese and jelly sandwiches on what looked like Italian bread, but wasn't. The cream cheese would just ooze out of the sandwiches and it looked so good, but I had one. We were too poor."

If I have learned one thing during this time it is that our experiences as children remain with us all of our lives. She has forgotten so much but her childhood she remembers and they are not usually good memories. We should all realize the power we have to mold happy lives for our children and be grateful to those parents who have done that for us.

I can't believe March was the last time I posted something and then I think back and realize it has been that long. I hate to say things have been hectic, because I realize everyone's life is hectic to one degree or another. It has just been hard to find the time to post or write anything. Although we all would like to think differently, I know no one is waiting for bated breath for my next post or thought, but I do miss getting the chance to write them and then to hear from other.

I was speaking to a friend of mine the other day (actually several weeks ago). She was a caregiver for her mother who suffered from Alzheimer's and who died recently. She spoke to me of a lot of things, but one stuck out for now. She said her mother went through a stages of the disease and one of them was being submissive. That describes my mother right now. There are still tense times and arguments, but basically she is submissive.

"Can I have this piece of bread?"

"Can I put this in the refrigerator?"

She walks around the house aimlessly many times saying "I am all confused in the head." I fluctuate from being saddened by what she is going through to frustrated with her for not dealing with it better.

The questions have not stopped and I am trying to be patient, but there are days when work has me busy and she will ask the same question several times.

One of the things that scared me was that my friend, Joyce, said one of the stages her mother went through was abusive. Her mother would hit her or pull her hair when Joyce was tying her shoes or the like. I think, change that to I know, that is a thought that has not left me. It is an experience I would not want to go through. I guess we will see what time brings.

One of the other feelings my mother expresses--besides that she is confused in the head--is that she will leave if she is too much of a bother. We then spend several minutes talking about how they will never have to happen, but she is so insecure. I try to remember, but sometimes with all the work, the bills, her needs and developments around the youth program I have a hard time.

What I don't want to do is resent her. I know I am frustrated and saddened (quite a bit) about the developments at the program. I know if I had freedom of movement and time I could do more to save it, but right now that is not possible. I hate when a kid calls me for help and I can't help. Today I had to meet with the assemblyperson of the area and another group. I transfered the last of the program's contract to this group. The director of the new group (he is in his 30's) remarked how his brothers and cousins all graduated from my program and he can remember talking to me outside his house when I would bring his brothers home. He said something like "Who would have ever thought I would be taking over some of the programs?" He meant it in the best of ways, but the sadness I felt as I was giving away another part of a program I have spent years building hurt right then and now.

Well, it is time to help my mom to get to bed and take her medicine. This is her favorite time of the day she tells me.

"I love going to bed in my bed."

She smiles and giggles getting into bed. We joke and I tease her about how heavy she is getting (she weighs all of 98 pounds). She falls asleep almost immediately. I think sleep lets her forget that she is "confused." Putting her to bed always makes me think that today might be our last day together. I kiss her and say, "Talk to you in the morning." I wait for her response of "OK," as if her affirmation is a deal she will wake up.

So many things are happening all at once that either I could not find the time to post something or was too tired to write.

The youth program I have worked with for 25 years is getting ready to fold. Some very bad decisions by a former director about three years ago have finally caught up with us. As hard as we have worked to raise money and keep the doors open, the expenses have increased and the grants we have had we lost due to a tax problem. I am working as hard as I can from my house to raise money and support but is difficult to do that from the house. One of the reasons we were successful was that I had the freedom to be all over the community for meetings, etc. I ran and was elected to my local school board. Due to my mother's condition that has been hard to impossible to do. I can not even be at the program on a regular basis as in the past.

I know there is some resentment on my part that I am stuck in the house while something I love is going down the drain. I have to remind myself daily that there is something or someone else I love that needs my care and attention right now. I know that and even accept it and even am content with it, but it is hard to watch 25 years of my life and dreams go.

My mother has overheard discussions about the state of affairs at the program. The other day we had a argument. My older brother wanted to come over with two of his kids and my mom was mad. She did not want him over and said he should have some consideration, etc. I told her that she is lucky her children and grandchildren to visit--some people are alone. Then she said I should have some compassion for her and that I did not. That, along with some of the tension I was feeling in regard to the program, pushed me over a bit. I responded in an annoyed manner that she was right--no one had any compassion. That is why Donna, my sister, comes over every other week to spend time with her, that my brother comes over on the weekend with the grandchildren, that my oldest brother calls daily even though he is going through chemo and that I am living with her and never leave the house. During the rest of the discussion it came out that I was upset that the program was closing.

The mother that I know is still inside her came out. She calmed down and said she was sorry that the program was closing and she knew how much it meant to me. She was sorry that I had to stay at home with her and could not get out. She said she had confidence in me and knew I would come up with something to save the program and if not, I would build a new one. She knew I would not stay down. Motherly instincts! Amazing how they survive even dementia or alzheimer's.

Since that time she has worked so hard to prove that she can be helpful.

She speaks to me after a business call about the program and says, "Talk to me. I want to help. I love you and you should be able to talk to me about the things that are bothering you."

In the mornings when I come upstairs from my morning routine, she informs me, "I cleaned all the floors already and am dusting."

At meal time she wants to help prepare the meals and serve.

What does it all mean? We all want to be needed and feel useful. We all NEED to be needed and feel useful. I think I try to do too much for her. Things like cooking or cleaning that she can do for herself and make her feel independent and respected. When I do those things for her I think she gets mad because it makes her feel like I think she can't take care of herself. I need to work on my patience and let her do things for herself.

It is amazing how we have the ability to touch the lives of people around us for good or for bad. It is amazing the things we do can affect someone not only for that minute, but for years and years--an entire life.

Long after the physical sting of my grandfather's hand, the sting of his words and his actions are still causing my mother to cringe, to cry, to be afraid, to suffer.

The team of mental health specialists (2 doctors) who visited last week and talk things over with her, called for another appointment. Because my mother is so fearful, I try to be as open and honest with her as possible, but sometimes the truth isn't what she needs. This time I tried the honest route and told her they wanted to come back and visit her. She asked, "Why?" The explanation-- a stretching of the truth--was that Dr. Kennedy (her primary care doctor) wants them to check on her. The answer was a resounding "NO!"

"I told them things I shouldn't have and now they may use that against me."

"How would they use that against you?"

She breaks down in tears, her body beginning to heave, she sobs, " I am happy with my life. I like being here with you and enjoying my family. Please don't put me away. Don't let them take me."

For the next hour I try to reassure her that no one is putting her away ever. That this is her home and we love her. That she has a right to express her feelings to anyone and not to be afraid and that nothing is going to happen because of it. I know that this hour or so and these words are not going to have any real impact and that she may have to hear this several times for several months before she accepts it and I guess that makes me feel tired.

She then tells me to follow her to the kitchen and shows me the bag her prescriptions came in. On the bag is an advertisement for a study that is being conducted for depression. Somehow in her mind she sees the bag as a message that she might be suffering from depression and these doctors that are visiting are trying to get her into the study where she can be experimented on.

"Please don't be naive. Don't let them fool you. I have read about things like this. Believe me."

I am not sure what upsets me more. Am I upset because she has to live with these feelings of fear or am I am upset that she doesn't realize how much I do love her and would protect her? Probably both. I also realize that she is not thinking rationally. I know alot of thinks intellectually, it is in my heart that I have a problem accepting things.

One of the lessons I am learning is to choose what we say and what we do when it comes to others with great care. We don't appreciate how much power we have over people--especially people we love.

Here is a quote used for teachers, but I think it applies to all of us in the school of life. Replace the words classroom with family; replace teacher with family member; and replace child with family member:

"I’ve come to a frightening conclusion that I am the decisive element in the classroom. It’s my personal approach that creates the climate. It’s my daily mood that makes the weather. As a teacher, I posses a tremendous power to make a child’s life miserable or joyous. I can be a tool of torture or an instrument of inspiration. I can humiliate or humor, hurt or heal. In all situations, it is my response that decides whether a crisis will be escalated or de-escalated and a child humanized or dehumanized."

Thank you to the people who have continued to read this blog, despite it sporadic appearances. Your comments and advice and kindness are a great help.

It has been very difficult to find the time and the energy to post. It has been difficult because there have been a lot of trips to the doctors. In between the trips my mom has just been more demanding of attention. I understand more now that I think of her childhood and what dementia is doing to her. It all adds up to big feelings of insecurity. I have written this before--I am mad that the mother I knew is victim to these feelings. Sometimes it makes me think that she questions my love or any of my brothers and sister's love for her. Then I remember that she is confused and during this confusion she is remembering the abuse she suffered and the losses she suffered and remind myself of the patience I should be showing. I realize that there is a tug of war going on inside of her--the healthy side that remembers just so much and the unhealthy side that remembers too much.

There is another tug of war going on as well. I have often spoke about the youth program with which I am involved. There is growing possibility that its doors will close as of March 31st. I have never married as a choice. I won't bore people with details, but I felt for me to do what I wanted I could not marry. It would not be fair to my wife or my kids (if I had any). There were years where I slept at the program because homeless kids had no where to go. To me the program is my family. It was what I was going to leave behind me when I died. A director several years back made some bad decisions and now I might lose it. And then I hear myself and hear the selfishness. It is not about me losing it or shouldn't be, but about services that might be lost for kids.

I sometimes resent my situation that I can't leave the house or get around to rally support for something that is very close to my heart. Obviously, I also love my mother and realize I am doing the right thing, but even the right thing can hurt.

I realize my mother finds security in routines. I can tell you the time of day by what we watch on TV. Days start at 7:00 AM and go something like this:

Good Morning America
Live with Regis and Kelly
Tony Danza
The View
The News
Who wants to be a Millionaire
Matlock
Matlock
Ellen DeGeneres
The Nanny
The Nanny
The Golden Girls
The Golden Girls
Jeopardy
The Wheel of Fortune
Bed

I started to realize that I too was seeking some hiding spot in this routine. It is easier to be resentful, feel powerless and get lost in TV land. I couldn't sit back and do that.

This week my sister is in and I got a chance to go the program for the first time in a long while. I was a little afraid to walk through the doors it had been so long and I wondered if the kids were mad. I walked in and immediately was welcomed with hugs and miss yous and how is your mother and how long can you stay. I remembered why it was worth the fight to keep the place open. These are kids that the system said were failures, who are alienated, whose parents might not be around or might battling addiction, etc. They did not think they could succeed and they are. They are great. I love to speak to groups, especially schools, and say these were kids that you said were crap and would not amount to anything. You know what? They are great. They are coming to school. They are graduating. They are going to college. Our graduates have gone on to be police officers, firemen, nurses, stock brokers, electricians, carpenters, FBI agent, teachers, para-professionals, parents, etc. They proved you wrong!!

The visit re-energized me to do something. I have some groups that are willing to send me some bodies (staff) to man the place, I have another group that is willing to absorb the programs so we don't lose them, and I have some elected officials going to bat for us. I am hoping and praying for the best.

And just when I think I have lost the mother that raised me when I am putting her to bed and in a reversal of roles tucking her in, she looks at me with clear ideas and strong voice and says, "I know you are sad. Don't worry you will work it out. It will get better." And then I also remember why I don't mind having a tug of war with myself over two things I love very much.