how apropos-When I thought of this title to this blog, never would I have envisioned the double entendre that it would represent.  It was only today as I talked with my brother that I realized something---I can remember being with my brother all the time, playing everything imaginable with him-he was always there for me, always willing to share, always willing to drop anything for me.  He is still always there for me and I thank my mother for forging that bond between us.  Kevin, thank you

Clarification

I feel as I should explain a few things to put my blog in perspective.  As a litte girl, I constantly wrote in my diary and that continued as an adult.  The one thing my mother used to tell me is that my diaries were so depressing and it seemed that I was so sad.  I usually love to write when I am feeling extreme emotions.  I let my emotions write for me, that is why I never check over what I write. When I started this blog, it was a way for me to keep track of my mother and let others feel what I am feeling.  While those feelings are constantly changing, I wanted people to see the true feelings. Rather than lie and make people think all is ok, I wanted them to see the real struggles, thoughts, feelings, and difficulties as well as the joys and pleasantries that we received.  By never rereading what I wrote, it made it easier to say what I felt at that moment.  Do I feel this way all the time-Goodness no if I did I would be a horrible mother, wife, sister, brother, friend.  Rarely do I display sadness and even more rare is it shown in front of others.  Which is why I write....at night....late night....when the pitter patter of children have disappeared and the house is completely quiet.  Well as quiet as our house on a busy street can be.  I open up my lap top and let the words tumble out faster than I can type.  I let myself feel and grieve which may be why my emotions are so strong.  So  I thought I should blog once duirng the day while the screams of laughter echo through the rooms and my children jump up asking what I am doing.  While the bird screeches at me for attention and the door knocks for the eleventh time today.  I wish I could say that my life became less busy but that is not the case.  Yes school is done for me (I am thinkin of going back for more lol) and my mother is no longer here. But I am consumed with my teen parents, my young adults, my children, our new house, our non profit, spendin time with my father and brother, visitin our widows, and whatever else God throws my way.  I do not disclose all that I do because it would make your head spin but it is enjoyable, adventerous, and always fills me with peace.  I am happier, less worried, and generally calmer in the last two years than at any moment in my life before.  But I also went through a lot with my mother and it affected me in regards to my previous relationships.  I am praying that I let the past go and move on.  I have had some people come to me and apologize for not being there  and I have forgiven them.  It is just hard to rebuild the relationship or restore it because all I am thinking is what if it happens to me.  Will I be forgotten too. I am quite blessed with amazing friends, fantastic children, a strong and phenominal brother, my courageious father, my supportive and wise husband, and a Heavenly Father that directs my life the way He sees fit.  I stubble often but He is there to put me back on track.  It is for Him that I live and I forget that sometimes.  I grieve but if you were to see me and meet with me, you would find that it is not as I blog it.  Picture your grief and picture your worse moment.  THat is when I write.  So please do not think of me as this person consumed with sadness that my life has no meaning or that I cannot function.  I will remember this when I write and curtail the strenght of my emotion as I write. 

One last amazing blessing that has occurred in my life.  My brother has become part of our team again and the awesome threesome is back!!!

Things the grieving should never say but I am

Life goes on and we constantly adjust to the monotonous life without my mother's presence.  I have no idea how people can say that it gets easier as time goes on.  That seems such a lie and I cannot fathom how that can be.  At first, when she passed, I was relieved.  Selfishly I was glad that I could finally enjoy my family and not have the responsibility of caring for someone.  The numerous phone calls, the last minute emergency, and all the time that I spent away from my family were over and I was free.  Ironic how the realization that caring for someone is not as much as a burden as it seems at the time never dawns on you until you have all this time and no one to care for.  Then I was relieved for my mother, that she no longer had to suffer and watch herself disappear.  Finally I felt relief for my dad and brother.  They could move on with their life and start over.  How strange for all of us to realize that she was our life and we do not want to start over.  I believe all of us were so tired and burnt out that the first few months, we cried our share of tears, but we were OK. We missed her but were OK.  The days dragged on, weeks passed, and months went by.  The sound of her voice singing still fresh in my year.  Her contagious laughter but a moment away.  On the rare moment that I stopped my life to think of her (because to think of her meant agony-literally from crying-those headaches are the pits) I would have my sadness and move on.  I could detach and talk about her, call the autopsy doctors, talk to friends about her, and stay unemotional. 
It started very slowly at first...The teamwork of three, my dad, my brother, and me started to dissipate.  Kevin in his own destructive world alienated from us. Dad into his lonely despair. Me into my chaotic craziness of constant people. Each traveling down our own path trying to make sense of everything.  Not only did mom leave us, but our own worlds were no longer colliding but traveling to separate solar systems.  Then the triggers, the constant stupid things that brought you to your knees with emptiness and sadness.  The songs that she sang, a movie title, April fools day (that I could not even bring myself to acknowledge) my daughter getting her ears pierced, a mural on a building that was the same as a picture my mom once painting.  All of a sudden, every thing in every day reminded all of us of mom.  I could not escape her, thinking of her at a moments notice many times throughout the day. So much of our life has changed both emotionally, financially, mentally, physically; my entire life took such a twist.  It was not just the death of my mother that rocked us so hard.  It was the death of relationships with family members and friends that long forgot mom assuming that since she had Alzheimer's she no longer knew them.  One time, my mother was talking to someone and said who is this, I do not know you.  They took it literal thinking that because my mother had Alzheimer's she did not know them.  I wanted to rip the phone out of her hand and yell "She knows you, she is still her sarcastic little self telling you that she has not heard from you in so long that she no longer knows who you are"

Side note here:  my mother got her autopsy report completed and for those of you who did not hear, she had a Subset of Alzheimer's known as "hippocampal-Alzheimer's disease.This form generally affects the parieto-occipital and temporal regions, as well as Ammon's horn, are invariably severely involved by the pathological process (p.11). Delay & Brion also described "atypical" cases of AD that have more severe cortical involvement, mainly of the occipital, occipitoparietal or frontotemporal areas, which were either forms with diffuse involvement together with focal reinforcement or focal cortical forms (p. 90-91). These atypical cases are reminiscent of the hippocampal sparing cases described

What does this mean.  Well for those of you that have no idea about Alzheimer's, generally Alzheimer's affects the hippocampus.  How does that affect a person.  Well the hippocampus is the part of the brain that is involved in memory forming, organizing, and storing. It is a limbic system structure that is particularly important in forming new memories and connecting emotions and senses, such as smell and sound, to memories. So most people with Alzheimer's forget which is why people assume that all people with Alzheimer's forget.  Those with this rare subset, hippocampus sparing" do not generally forget memories and people.  Their body slowly shuts down and they are aware of this until they die. 

My mother knew she had Alzheimer's until she became unresponsive the last few days. She knew that every friend and almost every family member abandoned her and it crushed her.  It crushed us watching this people person, helper, and friend to anyone die without one friend still in her life.  She kept asking what did she do to make everyone turn from her and I became angry.  I am still angry because of this.  I am tired of watching what I say in case I hurt someone or make them feel bad. Well they should feel bad.  We had to feel bad watching those tears roll out of her eyes because she noticed people calling my dad instead of her. Ironic that she was the one with Alzheimer's and yet she was forgotten by others.  So to those of you who could not bear to see what my mother was turning into when you knew what she had. For those of you who it was too difficult to watch.  You not only gave up on mom, you gave up on us.  You left us without a shoulder to cry on, an ear to comfort...You turned your back on us.  There are some that gave up on mom before we knew what she had.  I do not blame you one bit.  Heck I almost did myself because she was that unbearable.  Please release the guilt you have.  And should I be writing any of this...nope but at 4 in the morning, I am not worried about it.  I am no longer angry, I am indifferent .  That is what I mean when I say so much has changed in who I am and in my life that I no longer recognize any of it.

Not to say that there have not been many many blessings and great thins happening in my life, there have been.  And on another day when it is not quite so late, I will devulge them.  Night Night

So hard

So I have disappeared for some time and for that I am sorry.  I had no words to really describe what I was going through because it was mostly an inward thing.  I am so bad about sharing my feelings and I do not like to cry in front of others.  It would be in the wee hours of the morning that I would release my tears and let them fall like the rainfall of a heavy thunderstorm.How can you express the feeling of complete and utter confusiona, sadness, heartache, and longing.  How can you convey the emptiness that you feel when you look for someone and they are not there.  Every day flies by and I continue my role as a mother, wife, sister, daughter, friend, mentor, and confidant but do not let that fool you.  My heart burns with the desire to see my mother one last time, to hear her singing some sweet melody, even to hear her scream at me and destroy me with her words.  Anything would be better than the silence that surrounds us. 

I stay busy not necessarily by choice but by design.  I find that I actually do not have time to mourn my mother.  In so much of what I do, I see her and hear her.  Yet I cannot give more than a few moments or I am surrounded by sadness.  I detach my heart from my brain and flounder one.  News like they are so close to a cure destroys me and sends me spiraling down.  I guess I am in shock of it all, like it really is not true and any moment she will jump out and say just kidding.  Some crazy new practical joke like she liked to play.  And then reality hits in and I see the last night with her gasping for breath.  I remember seeing the numbers of her blood pressure and the temperature reading of 105.5.  I remember seeing so much from that night and next day that I cannot excape it. 

I still find joy and laughter, smiling often and enjoying moments with my friends and family, but htere is this hollow feeling that always is in the background.  When the children accomploish something or I want advice, I find myself wishing I could call her and talk it out.  That is something that women are good at because it just isn't the same with men.  I try to talk with my hubby, my brother, my father, and they all say the same thing-they dont care for the details or every tidbit of information.  In fact they find it kinda annoying.  So I keep things to myself.  Where as with a woman-especially my mother, she wants you to paint the picture and give every detail possible.  Daily accomplishments that I do or my kids do are shared with only my mother in law now when she can.  Over the years, I have lost some close friends-those friends that you build so many memories with you can finish each others sentences.  With Mom gone, I mourn the loss of those friends as well because as an adult, it gets harder to find friends that you hang with like you did in high school or college.  There are less opportunities to build memories and close relationships.  I lose the ability to talk freely and open up with newer friends. 

It is in the times such as this with all the family around that makes this so difficult.  I have not broken like this in so long but Man I miss her.  She should be here to see everyone and be a part of this.  Mom, I love you somuch and wish for just a few moments I could holdyou again.

Did you think I left..My posts are fewer and fewer lately, but that is because I am busy planning our first fundraiser. I am actually planning a benefit and ironically, 100% of everything goes to someone else. Not a great fundraiser for Works in Faith, but what a fantastic way to help someone else out. I will share his story the next blog; tonight the blog is mine to ramble away.

We made it through Thanksgiving without any drama. I must admit that it was quite pleasant to have such a relaxing holiday. We got to spend it with more of our family and I like that we are getting to know each other so well. Over the past few years, I have spent more time with my aunt and uncle. Conversation flows freely-often we talk so long that I am inevitably late for something. They are two amazing people that do so much for their family. I am touched each time I hear of what they are undertaking. They will give, drive, help, support, and love their family no matter what. I am grateful to have them in my life and love them dearly.

Thanksgiving day was extremely interesting though. What should have been a simple turkey preparation, turned into a science lesson gone wrong. It left me worried about my daughter in a intrigued sort of way. So picture this: Me hands deep into raw turkey removing the inside baggy filled with the liver, heart, and gizzard. Mackenzie is quite mesmerized by the entire turkey and wants to know where everything went and what every part is. The scary part is when she decided that she wanted to keep the turkey heart. What do I do-make matters worse by explaining to her that the heart cannot be kept-it will ruin unless you were to have a jar filled with chemicals. The next words out of her mouth were priceless. Well, that is what I want for Christmas then-body parts in jars of chemical-eyes, hearts, brains, bones...Hmmmmm I can see it now:::::Mackenzie hosts a Christmas party in which all the lovely little girls come dressed in their holiday outfits. They enter and go straight for the toys in Mackenzie's room. Suddenly a shriek can be heard and all the little girls come running out saying "AHHHHH Mackenzie has a room full of body parts. She has these eyes, hearts, and brains up on her self...What did I create...So now she is telling everyone that she wants coroner type stuff with sciency stuff for Christmas. She wants real bones, a brain model, heart model, and a microscope since she cannot have the body parts in a jar.

That made our thanksgiving fun to say the least. Dad even enjoyed it and found it surprisingly easy. IT is not the holidays that are hard for us ironically. It is the every day activities that bring the tears to our ears. Today at rib fest, a simple song made us all tear up. For dad, spending time with us is a reminder of mom gone and what she lost. I know that I am not dealing with it because I constantly push it way. I try not to remember her or think of her so that I do not have to feel the sadness that comes with it. I do not want my children to see me so sad about it so I push it away. I know one day it will catch up on me but until then, it works. The emptiness that has been created since she left is so deep and so difficult to grasp that I cannot. It is the same horrible feeling I used to get when Jason and I were 1000 miles away and I could not see him or call him. The anguish of the heart in torment -unless you have felt that sickening feeling in your throat, the heavy aches of the heart, the hopeless helpless feeling, there is no way to express it in completely. SO to help my father, I want to give him a unique gift. I want to give him the gift of companionship. To all my friends with single mothers, or to anyone out there that is looking for friendship or someone to do something with, please email mecjsmith@gmail.com. Help me find him someone to help ease his heart of loneliness.

M

I miss her

It has been awhile since I wrote and there has been so many amazing events and disatrous events. I happened to look upon this blog as I was planning my Christmas cards. I could not remember who I used last year so I referenced this. Bad bad idea. It seems that as long as I keep busy and distracted, I am able to go without crying. I am able to find the joys and blessings that surround me. But oh look out when I happen to look at a video or picture of my mother. Man I miss her so much, I see her face in my thoughts and in my everyday actions. I hate that she is gone and that one day there may be another woman in my father's life-someone that I will have to put up with knowing that he may need the companion but hating her for being where my mother should be. I want my father to be happy but it crushes me to think of her being replaced. I know that mom could be difficult or onry but I would give anything for just one day of her crazy bipolard drama. I sometimes feel like she was a dream or that she did not even exist. There are times when I try to smell her scent or hear her voice and it is like I am grasping at straws. THe memory is there but it is so abstract and so far that I cannot reach it. As Thanksgiving approaches, I find myself ok with the holiday ironically. Maybe because with MOm the holidays were also so stressful and filled with so much anger. It is the everyday events that I am reminded most of my mom, the desire to share Mackenzie's accomplishments with or Connors crazy injuries. It is watching Dad redo his entire house and feel as though it is so unfair that she wasn't around to watch it happen. My insides scream just to talk to her and hold her. I have crumbled tonight, tears pour out of my soul and my heart throbs with sadness. That horrible knot in your throat that makes it so difficult to breath smothers my sobs. Why is death so hard, so difficult to accept and move passed. Why does she seem so far away her mere memory is becoming so distant that I struggle to remember the memories.

missing

it has been a strange few weeks...to think that this Friday marks three weeks since my mother has passed. It is so indescribably so utterly difficult to explain the loss of someone you love. There are moments when it is simple and not troubling, almost that life is still fantastic. You stop thinking about the person and start embracing the freedom that not caregiving gives you. You relish the moments and the time that you have gained and thank God that everything is still continuing on. But then a simple trigger, a music box, a light in the mirror, making a bed a certain way and BAM, the tears flow, the memories come and the empty saddness envelopes your brain, heart, and soul. You beg for one more chance to see them, you crave the smell, your body longs just to hold them. There is no peace no satiating the pain that comes.

Yes I feel free, I am able to enjoy my children and my husband. I have less stress (althhough since mom passed, my children are continously sick with strep, flu, and who knows what else). I get more sleep and spend more time doing recreational things. But I miss those nightly visits with my mom. I miss our convos. I miss having her there.

I go to my daughter's school for Grandparents day and I see all the grandmothers wondering why my mom did not get to enjoy this special day. I try to find peace by reminding myself of the struggles my mother represented and the difficulties she created, but that only brings guilt. I should not think of my mother in such a bad way. I am a realist however and think about the wonderful personality of my mother but never want to remember a false woman. SHe was full of life, she lived in extremes. When she loved you, there was no greater feeling; but woe to the person she was angry with. She could make you an 1nch tall in less than 5 seconds with her tongue. She was not a woman you triffled with. Her passing gave us all freedom, but this freedom (like all freedom) came a such a cost. I miss her.

Love

I have been blessed with such amazing friends that have helped me with dinner this entire week-strange that I have no desire to eat, a similar feeling shared by my father and brother. It has been rather an up and down battle for us. I was surprised at how well I was doing-only a few minor blimps with an occasional tearing up. It wasn't until my cousin sent me a bunch of memories that I let loose (which for me is really just a slight cry). It felt good to relive some of the memories and I was amazed at the detail and description of my mother from his eye. Of all the thoughtful things that people have done for me, this topped it. Just hearing about her and thinking about her brought such happiness followed by those tears. losing someone like my mother or anyone's loved one, leaves such a pit in your stomach. It is indescribable-just a feeling of emptiness that you try to fill but I cannot pour enough back into it to make it whole again. The memories help but it is still empty. I miss her more than I thought and am thankful for the videos. T hey will be a comfort to watch and see my mom once again.

Audrey Marie Ducharme

Mom's Eulogy

First I say thank you to all of us for the loving care we gave mom. We all went beyond the call of duty. Kevin’s dedication to keeping mom engaged with laughter helped give mom the fullness of life as long as possible. I thank you Kevin for the sacrifices you made to make mom’s time easier. And thank you to my father for keeping her in the home. You gave Mom such good care during her most critical time including being with her at the end. I am also so thankful for my father’s brother and my uncle and aunt. They were such a support to my father, helping to ease his burden and reminded him to live. A special thank you goes to my husband. His willingness to sacrifice a normal life so that I could care for my mother overwhelms me even now. Night after night I would go to my mother’s while he put the children to bed, cleaned my house and made my life less challenging. Clearly I am a woman that is truly blessed

Please excuse my rambles as I attempt to describe a woman that was so full of life and lived each moment with such climatic energy. Those of you who knew my mother would have described her as one who gave so freely and carelessly, one who thrived in the lime light, and demonstrated a passion in every motion every action of her life. She also was such a beautiful person and we all know that she was exceptionally vain. I can still hear her singing "Oh Lord it’s hard to humble when you’re perfect in every way. I can’t stand to look in the mirror I get better looking each day. But that vanity is what made everything she did so remarkable. She took such pride in herself, in her actions, in her projects... Many of those projects were children that found their way into our home…From students that she worked with to friends of my brothers and I, to neighborhood children, there was room in her heart for all of us. She became a second mother to so many including my best friend Tori. Tori was fortunate to say her goodbyes just two weeks ago and could not be here to attend. So she asked me to read this to you:

“Although it is far too soon for us to lose someone so special, we must be thankful for the time that we shared. Audrey Marie Ducharme was such an incredible woman. Very few people will ever give to or care for those around them as much as Audrey. She was a good Christian woman, whose heart was full of love and enthusiasm for life. Her spirit was contagious. To hear her laugh could melt one's heart. The joy Audrey brought to others made you want to do the same.

Memories of Audrey could keep one talking for days – from her singing to her joking; she brought so much to so many. Audrey touched many a life by simply giving of herself. She opened her heart and home to everyone she knew. She stood ready, willing and able to help whomever crossed her path in need of assistance. .

She had am immense love for her husband, Frank, and her children, Kim & Kevin, of whom she was extremely proud. Her love, however, extended to her children’s' friends as well. Audrey took them in and loved them as her own. Her home was always a place of love and life. Her dedication to her family was unmatched. She always had time for her family and made the best of every moment. The time we were all fortunate enough to have shared with Audrey and the memories we have will remain in our hearts and minds forever.

Tori is right in saying that my mom touched so many by simply giving. She never thought twice at paying for someone’s entire grocery bill as she was checking out or slipping the waitress an extra twenty just because. She paid it forward throughout her entire life including up to the days of her death. My mother is also remembered for her practical jokes. She loved starting food fights at the dinner table, playing practical jokes on us, holding a glass full of water and unexpectingly throwing it at you. You never knew what to expect from her-she was full of contradictions, intrigue, and extremes. She definitely kept us on our toes.

She also was courageous and fearless. I am forever in awe at the dignity she displayed as she battled this horrific disease. She never forgot what was happening to her-she knew she would not be there for her grandchildren. She knew when she got worse and stayed in control of her alz... She even praised God for giving her alz. She once remarked that God gave her this disease so that she could walk up to a perfect stranger and talk about God. They would let her because they felt bad for her. TO watch yourself degenerate knowing that there is nothing you can do to stop it and that it is only going to get worse has to be so horrific and difficult to handle. Yet she did it with such grace. I will never forget the week she found out. Days before she found out the diagnosis, she was told she had breast cancer and a brain aneurysm. She fought the battle with breast cancer only to find out that the treatments jump started the alz. She fought alz and I consider the battle won. It may have taken away her abilities, her personality, her life, but it did not take her memory…

As a Christian, my mother had a peace about her life and would want us to celebrate her life. She was ready to be with her Maker and no longer has a body that can be destroyed. As it says in 1 Corinthians 15 42-44…

So will it be with the resurrection of the dead. The body that is sown is perishable, it is raised imperishable; it is sown in dishonor, it is raised in glory; it is sown in weakness, it is raised in power; it is sown a natural body, it is raised a spiritual body.
If there is a natural body, there is also a spiritual body."

She will have a new body one that cannot be destroyed bit by bit as her old body was. As a believer in Crhsit, my mother will spend her eternity with her Lord and Savior. IT was this faith that carrie d her through times that would have destroyed a lesser person. I cannot help but respect that power.

It will take some time for us to gain some perspective on the meaning of not having her in our life. Right now, my mind is clouded with distressing images of her during her last few motnsh. I believe that as time passes these images will fade and I will remember the essence of my mother. The images that will persist will be of her singing to us each night as children or chasing us around saying Niagra Fall. Mom will always be in our hearts. So much of who I can is directly traced to my mother. So in a way, I am an embodiment of mom, we all are. Because whiel we live, she still lives on. She is all around me and is a part of me. I am relieved that her suffering has eneded and I will let the memories give me peace.

At peace

Well our adventure with alzheimer's is officially over. Mom went to be with the Lord today at 12:33 am. I must say that I was pretty prepared or as prepared as one can be. I hope never to experience this again but I am sure that I will. Watching someone you love pass away is horrific-the smells, the sounds, the images will haunt me for a long time. The image of her right now as she lies in the bed just a room over is one that will not easily erase from my memory. She is so cold, so skinny , so lifeless that it is difficult. More later hospice is here.

The Long Goodbye

My father made the statement tonight that this is called the long goodbye and it struck me as such a simple and profound way to describe what is happening to my mother and us. Watching someone die is pretty taxing both emotionally and physically. Watching someone who has no idea that they are dying and yet can still communicate is even harder. We ask her how she is feeling and she tells us that she feels that she is getting better. It tears us up not being able to tell her to let go or to say goodbye. And although Hospice tells you to let them see you cry and to let them know they are dying, I guess it is different when you are a patient with Alzheimer's and even different when the patient with Alzheimer's still has her memory (sorta).

So how is she doing. Well not good which I guess is expected considering our only outcome from this ordeal. She has been in bed for two months now and has not eaten anything in 31 days. Her breathing has become more shallow with a few pauses. most noticeably is the sound of her breathing. It seems she has a lot of fluid in her throat and lungs and no longer has the strength to cough it up. She can speak in whispers unless she gets angry-and then she can talk much louder. She is hard to understand partly because she is so quiet and partly because she cannot recall words. She does not move her legs or body at all and has developed bed sores. I am pretty proud that it is only now that she is getting them and hospice said that they are going to get worse since she has no nutrition to help counteract them. She is so skinny-prob around 74 pounds and her skin is translucent. She has a medical smell about her and her breath smells like a hospital room. Thankfully she is still coherent most of the time (when awake) and I think it is due to the fact that she is on oxi not morphine. Tonight she started with some severe hallucinations and I could not figure out what happened. She started to scream and yell at someone and was reassured when I told her that I was there and would protect her. It was something about someone taking something. I managed to get it back for her and she was happy. She did it a few times out of the blue and then would go back to her vacant stare with her mouth open wide staring at the ceiling. She did talk with me for a few minutes and I even got a smile when I told her that Mackenzie starts kindergarten tomorrow. A weird thing happened to my father today and maybe someone knows what this is. Dad had to change mom and noticed that there was some very light pink jelly like material in her diaper. I did not see it but I am thinking some type of mucus from her bowels? Any thoughts.

This entire process is such a difficult thing to endure. I am not sure if the waiting or trying to figure out what is happening is the worse part or watching someone you love no longer able to do anything but lay there. The entire time I am with her, I think about what could have been and how she would have loved the grandchildren. I think of all the kid's extracurricular activities that she won't share and all the sleepovers that won't happen. I think about the fact that it might be me in that bed and am anxiously waiting for the results of the PSN1 test. Mostly I think of how much I am going to miss her and how much I want to hear her say she loves me. I want to have my mom make me supper and give me a hug. I want to hear her say it will be ok and that she will be there for me. Instead I have to be there for her telling her it is ok and that I am there for her. I rub her hair and bath her, I tell her I love her. She is not dead yet and I already miss her. In the late night hours when no body is up and no one can hear, I let the tears fall. I squeeze my fists and crumble wishing I could reverse this disease and bring back my mother.

Like the song in tangled...Flower gleam and glow, let your power shine Make the clock reverse and bring back what once was mine. Heal what once was hurt, change the fates design save what has been lost and bring back what once was mine. what once was mine. I keep hoping if I sing it long enough, maybe just maybe my mother's body and mind will be restored.

Ok well on a slightly morbid yet funny side of this horrible situation: The other night I was explaining everything to Mackenzie about my mother dying. Her response was...Mommy, when Gigi (my mother) dies, can we have her stuffed like you said they could do to kipper (our pet that she wanted to have stuffed so she could keep it with her). Gotta love kids for finding simple solutions and bringing humor into such sadness....

Tori leaves

It is less then three hours before my best friend will leave and I wish there was more time. Not only was it extremely uplifting to have her here, but our children got along better than I ever anticipated. Mom was so happy to see T the first night we went up there. She even let her join our movie night extravagansa. She told T that she loved her which is more than we have gotten in the last few days. Today, T got to bring her children to meet my mom (the little baby especially since mom has never seen him). Joshue (the baby) cooed with mom and was so sweet to her. Mom had a great big smile on her face for a little while.

Mom is not doing so well but according to a new hospice nurse, is not actively dying or if so she is in the early start of it. So I am realizing that these people do not have a better idea about this than the three of us with our knowledge. We are trying to utilize the services but it seems to make things harder rather than easier. Today a gentleman nurse arrives and before he can even greet mom, his phone rings and he states that he will be back in an hour. Three hours pass before he comes back and with his trainer. They kept talking about her dying while she oculd hear. Mom soiled the bed and they did not even offer to help us...Needless to say, Hopsice and I are not seeig eye to eye on many things and tonight they arrived and made mom so agitated that dad had to ask them to leave.

I am trying to type quick so I can go to sleep early so please excuse the lack of detial or information. I will update tomorrow

Still up and thinking

So it is time for me to go to bed and yet I am still up. I just finished my vocational evaluation on a client and was interrupted a few times by my daughter. She was so silly and cute asking questions and giggling uncontrollably. It made me feel so blessed. I asked her if she wanted to go see Gigi and she had some difficult questions. She is so interested in the dying process and finds it fascinating. Her greatest concern is that she gets to be involved. She understands what is happening but deals with it so matter of factly. She tells me that Gigi cannot do anything and will be with God as a new person. So she is happy. She sees the tears fall out of my eyes and asks me why I am crying. I tell her it is because I am sad that she will never know the real Gigi. That she does not get the experiences with her that she should have had. Kenzie (or M.E.-Emmy as she wants to be called-another story on that after this) does not remember Gigi being able to read to her or buy her sooo many things that it was over kill. She does not remember all the games and will never experience my mother's famous food fights. On the flip side she does not remember Gigi's freak outs and will never had to deal with the mental anguish my mother was so good at bestowing on those she loved the most. I could not help but cry.
Tonight I have cried more than I thought possibly. In fact I am sure my mother noticed because she got upset with me for some reason. She actually said "Kim you just don't know." earlier, she was staring at me and I asked her if she knew who I was. She looked at me with this duuuuh look and raised her hand pretending to slap me. Then she said of course. It was quite humorous. She was extremely restless and agitated tonight. She wanted to say so much and couldn't make it come out.. She is in the active phase of death and it is only a matter of time. I don't want her to live like this but I dont want her to go either. I did not think I would be like this. I thought I would either be emotional or strong but it seems that I am neither. I break down in the solitude of the night and I talk like a robot. i am sure to the casual observer I am cold or calculated because not even a tear grazes my eye. People call me crying and I am the one consoling them. It is funny because I do not want to. I do not want to mourn with anyone except to my husband, my mother in law,my dad, my brother, my uncle rico, my uncle skip, my best friend, and my friends Megan and Summer. Why those few-because they have gone through it from the beginning of the end. They stuck by my mom calling daily or weekly or checking in with her. They let her know how much she meant to them and made her feel special and normal. I can open up with them and feel a special connection. They will always have a spot in my heart for what they did. I thank you guys from the bottom of my heart.

About Emmy: Ever since I babysat for Jennifer Gulden, I loved the name M.E (her sister was nicknamed that and I thought it was so unique). When I had a daughter I named her Mackenzie Emma and never realized the initial connection. It wasn't until kenzie was two that i realized Emmy as a nickname but try as I might, she did not like it. Well last week my mother gave Mackenzie this collectors doll and guess the name: Emmy. Mackenzie asked her name and when I told her, she says "that is the name that you liked and it is now my name. I have grown fond of Kenzie and really am having a hard time calling her Emmy-she is not an Emmy so we shall see where this goes. She even went as far as to tell her new school that her name was Emmy not Mackenzie!!!

Mom is dying

Hospice has been called in now that mom is in and out of our world. SHe still can talk occasionally and has retained her memory. We are blessed that she has not forgotten her sense of humor, her family, and her ability to use sarcasm. We still were ablet o hold on to a bit of the old mom and enjoyed the sensitivity and appreciation of the new mom. Hospice has given her 3-7 days as of Monday, but from the looks of today, she is in the active phase of death. My best friend is on her way down and I just hope she holds on long enough for Tori to say goodby. Thank you T for traveling all this way. You are truly my sister!! I love ya. Anyway, pray for us and my mother as we are traveling this unfamiliar road and pray for Tori for safe travels. I will post a bit more later. I just rather spend time with my children, my husband, brother, father, and mom.

What words can I type to express my sadness over this...distraught, worried, beside myself, hysterical troubled, worried, upset,flustered, concerned unhappy bothered, anguished tormented, suffered, agnoized tortured grief stricken, sorrowful, angst ridden , heart broken, broken hearted, desolate, despairing, wretched, miserable burdened, pain, hardship, endure, mournful, sad, somber, sorrowful, woeful, doleful,

My heart struggled tonight as I lifted her 83 lb body to the bath tub while she had terror and fear in her eyes and her voice. She quivered as she said why are you doing this to me-after she asked me to bath her so she could hopefully pee in the tub. She has not eaten a full meal since July 20th and her last bite to eat was July 22. She has not had a bowel movement since the 20th and she has not urinated in three days now. She drinks a bit at a time and her breaths per minute are around 21. Her blood pressure is 106/66 with a rate of 116. She has a normal temperature. Her skin is starting to flake, her eyes are vacant glossy and rarely make contact. Her hair is radiant as well as her nails. All movement is jerky and rare. She barely moves. She still wants to maintain conversation but it is difficult as she slurs and can barely move her lips. I am going to miss my mom. I love you mom and wish you did not have to leave us.

IT is happening too fast

E

So things have progressed rather quickly once again. I am so sorry that I am not blogging. between my mother, my children, and my new job, I am having much less time on the computer and much more time just enjoying life before it is snuffed out. Since our birthday in June, things have quickly altered. Something happened the night of the 14 which caused my mom to stop eating, drinking, using the bathroom and walking. She bounced back when we thought she was on her death bed. Last Wednesday, we went to her doctor's appointment and she wanted to give one last gift to me and kenzie. She wants to go ahead with the DNA testing for the PS1 gene. I almost cried at her thoughtfulness. She wanted to go out to eat after and we went to olive garden. She ate her minestrone soup, salad, and the tour of Italy. She was stuffed, happy, and excited to be out. We headed home and she crashed. That was the last meal she has really eaten with the exception of eating a few bites of spaghetti on friday. She was holding her own until Sunday night. Something happened that night because on monday, she could no longer talk. She was able to speak a few phrases and then mumbled the rest of the sentence. On tuesday night, something happened when I was there. I noticed her mouth slightly skewed and monitored her. She had a fever of 100.4 but was not in much pain. On Wednesday, she was now leaning to the left, her left eye red, both eyes yellow, her mouth drawn tight on the right side and laxed on the left. Her left arm drawn into her body. She slurs and has a hard time swallowing. She has not urinated in 50 hours, no bowel movement in 8 days. no major food since 8 days ago. She runs a little fever now and then. She has a heart rate around 120. Her respirations are around 20 per minute. She has developed thrush in her mouth and we will get medicine for that tomorrow. She sleeps a majority of the time now with only a few hours of wakefulness around 7 until 10. Last night she still was with it enough to prank me. As I showed her a few videos, we picked out two. I decided to show her Sweet home alabama as a last resort and she gets all upset and starts shouting nooooooo nooooo. It startled me and I jumped. She started to laugh at me and said "I should not have done that. I teased her about pranking me and she thought it was so funny. After that she went back to zombie land. Well tonight, she showed her humor once again. As we were sitting there, she made a comment about my chest. For those of you who know my mother, you will remember her fascination with chests, especially those that are well endowed. My mother thought nothing of making exclamations about them or even reachingover to see if they were indeed real. Well for those of you who have been honored by my mother's inappropraite fixation, be reassured that she still has it. Unbelievable...truly....

My mother surprisingly is so with it. We have so many people calling now to make peace and to talk to her. She cracks me up because she is still as stubborn as always. She lets my uncle and my uncle skip talk to her daily. I will say of all the people, they have been the only ones that never failed her. My uncle calls her daily rather than spend his little money on basic necessities or entertainment, he spends it on a phone call to my mother. He talks to her and makes her laugh. For as long as I live, I will never forget what his love did for my mother. I find it amazing that people do not realize that she still remembers who you are and what you are in her life now. To her she wonders why they bother...she did surprise us by making peace with one that until recently wanted nothing to do with. So if you did not call mom when she was living with Alzheimer's please do not be offended if she won't talk to you as she dies from alzheimer's. Sorry if that is alittle harsh but I promised to write the way I feel and if it causes someone pain, well then maybe the next time someone has something horrific happen to them, they will embrace them and draw closer instead of disappearing because they could not handle it. My mom had no choice but to handle it and she did it with only a few.

Each day I cringe as I hear my phone ring thinking it is the call. I find myself tearing up throughout the day when I hear a song or think of my mother. I do not want to let go. I know what it is going to be like not to see her and my throat already tightens and the feeling of antsy tantruming is hidden behind my composure. I maintain the blank stare and continue with the motions when I want to scream how unfair this is. I want my children to know their grandmother but fear that they won't. sorry my thoughts are so jumbled...i am exhausted.

Where have I been...

So sorry not to blog in such a long long time. I would not thought it possible to become busier than I have in the past but it has happened. The difference is that I am busy for myself and not for others (not sure if that is a good thing or not). I am working in an unbelievable job as a vocational rehabilitation counselor and am making a great income. I travel up to 2 hours away but that is ok since it is on the beach. In fact, I get to go on Thursday and Friday work about four or five hours each day and spend the rest of the time on the beach relaxing and enjoying myself with the children and my friend and her children who is coming with me. On top of that, I started exercising. I participate in Zumba and can proudly say I am able to run 1 mile without stopping. Tomorrow I try 1.5 miles at 6 miles per hour. So happy to be finally losing weight after all this time. Now if I can only stop eating those hohos that my father keeps tempting me with.

Mom is steadily decreasing and I have to admit I am slightly creeped out when I see her. She looks so much like a corpse that I start imaging her dead or worse. I know it is my imagination taking over and it makes me feel so bad that I have these images of her. I wish God would take her before she deteriorates any more. her legs are almost always in a w position. She is completely bedridden, we carry her to the bath, to the potty, to the car, to the bed. We change her completely, she no longer tries to help or assist with anything. We crush her meds and give them to her in liquid form. She has incontinence now and almost nightly pees the bed. She still can talk and gets rather anxious from 8 until 11. Even during the day she constantly worries about everything-when is dad getting home when is my doctor appointment, do I get my money, who is coming tonight, when are we watching a movie, what movie should we watch, then she apologizes over and over for being so terrified and worried. She told me last night that she hates hates hates this disease that the Alzheimer's is so bad and she is always scared. Everything makes her nervous and she is so bored. She is tired of laying in bed but cannot handle leaving it. She is so weak and so tired but cannot sleep. Her tiny body is literally wasting away piece by piece and there is nothing to do but watch it disappear. I hold her in my arms often now and just rub her face and hair. I tell her stupid stories about the kids and occasionally get frustrated but the 100th question that she asks at 11 at night. I try to keep calm and focused but inside I just want to shout. I do not understand how she is still so aware of everything but feel blessed to have that gift. She still knows everything that is going on and for that I am grateful.

Teardrops

any ideas

A lot of people have been asking for an update on my mother and so I decided I should write in my blog.  We are totally and completely confused by my mother.  She became basically unresponsive and would not eat/drink/pee/bm or anything.  This lasted four days and gradually started coming back.  I beleive that she  had a combination of a mini stroke and dehydration.  She still is eating very minimally, maybe three or four bites of food a day.  She is drinking more than she was but not that much.  She pees once again and is having bowel movments almost daily.  She is much more involved in her care than the past few months and has given us complete control finally.  she is not sleeping as well as she was and tends to get rather aggitated later at night.She cannot walk except for a few feet and can no longer swallow her pills. She isnt in much pain and is rather sweet. She is a joy to be with because she is so loving-i dont like being up  late with her though.  These 2 or 3 am nights are really hard considering that i have to get up four hours later. As much as I hate to, I may have to wake my dad up shortly so I can go to bed. I must admit that as the minutes tick on i start to get upset and aggitated myself. there are moments when i just want to tell my mom to stop all her worrying and go to  sleep.  I find myself getting angry at her and hate that feeling.  I know it it not her fault but as the hours tick on and on, i have to count to 10 quite a bit.

This week has been an emotional one for sure. I feel like we are in limbo. we sit there every day and watch her die. Our lives are on hold while her death is on hold. we can not mourn and yet we are forced to grieve every day as another piece of her dies. and then the feelings that come-guilt for the selfish desire to have a normal life sadness for the loss of my mom, having to turn off emotions to deal with business like brain donations and research options.  there is so many conflicting thoughts that is enough to drive you crazy.

On top of this, I had to let go of a dear friend. It was the begining of this past school year that I met Yvi  as both of our daughters go to the same school. Instantly we hit it off and after spending some time at some school outings, I felt drawn to her.  for the first time in a long time she needed nothing from me, just a friendship. she did so much for me-she brought out the best in me and being with her made everything so enjoyable. Not to mention our daughters were instant best friends.  Two opposites brought together and quickly became inseperable.  Sadly as the last shuttle left today, so did my friend.  I am having difficulty with her leaving and yet happy for her as she starts a new job in a new state.  I hate feeling so conflicted-I am feeling so many more emotions and I hate that.  Normally goodbyes do not bother me and this one does. I hate that she was taken away and I hate even more how much it has affected me. I feel like a light has been taken away and with it the fun and excitement that she brought.

On a good note, I did enjoy a marvelous trip to the beach. My dear cousin was down in Miami staying beach front and was able to get me aroom.  how wonderful to just open the door and see the beach.  It made me realize that I am truly a Florida girl-i love the beach for an hour or so but am not a good tourist. I cannot spend hours on the sand and now know why I do not travel the two hours to go to the beach.  I did talk to j about living closer to the beach whenthe opportunity presents itself.  Desting might be nice...As much as I am starting to form a life in Sebring, the thought of living here and raising my children here does not seem right.  Being on the beach made me reflect quite a bit.

It is late and I am heading home-Mom has finally fallen asleep.  Good night all. 

Unappreciated

I must say that today I am feeling a bit upset.  I am so tired of hearing everyone say how bad my father has it and how tough it must be on him.  Why the pity?? Why does everyone forget just how awful the marriage was and why is it taboo to speak the truth?  Why must I pretend that they kissed and hugged and loved each other unconditionally, when it was not the case?  Why does no one speak of the fights, the horrific trips, vacations or holidays?  Why does no one talk about how much they dreaded that Audrey was coming..Dying from Alzheimer's does not change that, despite her wonderful personality and caring heart, my mother was sometimes really really mean?  Do I need to glorify her just because she is dying?  And why does everyone say how bad it is for my father, but don't seem to consider that it is just as hard and tough on my brother and I? I love my mother dearly and feel honored to help take care of her, but that does not change the history I have recorded in my diarys, all those words of sadness and frustration that she caused me to feel.  Does it change the fact that once she is dead, my father will have a chance at a new life, probably a happier one than the one he had with Audrey?  I promised myself that when I started this blog, it would be a true reflection of my thoughts and feelings.  Not to write something that is an illusion, but to show the struggles and joys of caring for a person that is dying.  I must say that throughout this, I feel that the negativity and pissing contests the worst part of the caregiving:  who has it harder, who does more, how tough it is for so and so.  So few look at this experience from a positive outlook and will not face the harsh realities or truths.  People say how hard it is for my dad and I do not understand.  He is blessed.  He will have a chance for a new life and new relationship with a woman that might actually appreciate him and love him afterwards.  He has his two children by his side helping him along the way.  Everyone seems to forget just how much we are doing and not to sound selfish but what about us??? Once my mother dies, he will have a chance to date again and maybe meet someone new that will love him.  But for Kevin and I, we lose our mother whom cannot be replaced by anyone.  We have a future of holidays with my father and the possibility of a new wife for him. While I am ok with that, we will still not have our mom anymore.  I am tired of people trying or saying that it is harder for one person or easier for another when the reality is that it just plain sucks.  It is difficult for everyone when it comes to death.  I am a realist and do not mind people talking upfront with me.  But please dont tell me how much harder it is on others and expect me to stay quiet.  It is equally as hard for my dad, for kevin, and for me.  It is hard for anyone out there that is taking care of a loved one.  But there are so many fantastic things that it does offer.  It lets you see what you are made of, what your true character is.  It lets you depend on others and learn from each other.  It forms amazing bonds between people.  There are so many amazing things.  Yes I can say ...for my dad it sucks because his life is on hold. While he should be retiring and traveling, he is stuck taking care of my mother.  The problem with this theory is that if mom was well, they would not be traveling because my mother was not the type of person you took trips with unless you want to hate the trip and the time spent because she would get upset and make the trip miserable.  I feel that for Dad, it is tough because has to watch his wife, that he once loved, turn into this other person.And since their relationship was so difficult, it has to be hard to take care of her because he doesn't have love from all the years to carry him through; he has a reminder of the hate and fights that stared at him every day.  But the blessing in it is that he can start over and possibly find someone that will love him unconditionally.  My mother was so tough on him and on me.  She loved Kevin unconditionally but for my dad and I, we were never good enough.  So I can understand what he is experiencing. Yet how many other fathers can say that he is loved so much by his two children that they have sacrificed everything to help him take care of his wife? 

I do not get to talk to my husband or even see him except  to say hi by.  When i get home it usually is so late he is asleep.ing.  And because it was so late, I would sleep in until the kids got up and jason would be gone.  So now I am going up Monday Wednesday and Friday nights staying utnil my mom falls asleep and Kevin is there Monday-Friday from 11-5.  That means, between Kevin and I, my dad gets a break Monday from 11am-3am.  Tuesday from 11-5, Wednesday from 11am-3am, Thursday 11am-5pm, Friday 11-3 am,  and Sunday for a few hours when Kevin goes up (which might end up with him sleeping over on Sunday night). The only day my dad has to take care of my mom by himself is Saturday, and even then usually I or Kevin usually pop in for a bit. So instead of pitying us, find it amazing that we work together to help each other handle this. Stop telling us how hard it is on whoever: yes it is hard but why not find the blessings from it.  How many alzheimers patients can say that they have three people dedicated to caring for them? How many caregivers can say they have two children spending about 50-65 hours a week helping them out? So we can choose to complain or focus on the brighter moments.  Tell me which is easier to listen to and sympathize with: A.) I am so tired because after taking care for two very young children, running up to visit some of our elderly widows for a couple of hours then rushing home to cook dinner, schedule babysitters for when I have to work, pay bills, welcome in the neighborhood teen moms, swim and have to rush Connor to the Er because he busted his front tooth and split his tongue in half.  I barely get to see my husband and tehn have to rush to my mothers sit with her as she mumbles incoherently, try to pick out a movie, muscle her into the bath, stay until 2 oclock in the morning until she finally passes out only to start again.  Or B.) Today I was so happy to take my children to visit one of our elderly widows.  She was so excited to see us since it had been a week from our last visit.  We spent a couple of hours with her and finally headed home. Once we were home, two of our neighborhood teen mothers came over to visit-showing me their newborn.  Watching my son gently kiss them made me feel happy that my three year old has learned to be so gently.  We then were able to go swimming and after, connor managed to slip and eat tile.  In the ER, he stopped crying and was so proud that his tongue was split in two and that he managed to wiggle the second half of his tongue.  Despite all the blood and gruesomeness, I started to laugh.  I even made it home in time to make it up to my mothers.  I said goodbye to hubby and went to spend the evening with mom.  I got to see my dad and chat briefly with him before hanging out with mom.  Just remember that  how you deal with any situation is a choice.  You can focus on how awful and how difficult things are, or you can find some reason to be thankful, something that is a blessing.  You will find that when you are positive a lot more wonderful things happen along the way.