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Saturday, December 3

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

Sunday, November 20

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.

Tuesday, September 13

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.

Friday, September 2

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.

Tuesday, August 30

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.





Friday, August 26

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.

Monday, August 22

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....

Saturday, August 13

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

Wednesday, August 10

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!!!

Tuesday, August 9

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.

Tuesday, August 2
















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.



































Thursday, July 28

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.

Wednesday, July 20

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.

Saturday, July 9

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. 

Monday, July 4

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.

Saturday, July 2

poor mom



My mom's writings

I came across these the other day and I wanted to share them.  My mother was an amazing story teller and an amazing writer.  Here are some of her poems.
1980
Poetry is the verse of all time
It eases the soul and quiets the mind
The words float like music
on waves of the sea
It's a beckon to all even to me

The times have changed
I want land but cannot afford it
I want peace but cannot seek it
I want obedience but cannot obtain it
I want to live in the times when these were easy gains but cannot
so I must forget it

Some lie in bed and fall asleep
to them I raise my glass
For I lie down and lay awake
to sleep is my big task
I think of things the whole night through
The answers never near
To sleep in peace with thoughts behind
would be a dream I hear
Some say to drink or take a pill
But I know that is wrong
To have a day with mellow times
would make sleep come along
1981
The further away the light is the better I see
For in the darkness I can find the souls and minds of people.
I sense the ever growing fear among them and the need to be accepted
To love is to hold dear no matter what hurt has been caused
To reach and feel when nothing is returned
In darkness I love all
In the light I know not of Love
To find Love in the light is to find eternity

Some poets rhymn their words
Some write a peaceful jumble
But I do neither, both, nor ever
will make the sense I feel
To feel a sense is one thing
to write it in words another
As long as I can write one
I do not seek the other

Neighbor
He's drinking, stoned or popping
Any thrill he tries to seek
The world to him is dismal
how to make it through the week
The night time is his glory

The day time is his gloom
He doesn't want to talk at all
just stay up in his room
The music helps to ease his pain
to soothe his troubled mind
But when the morning comes again
Happiness he does not find
He tries to stop the boozing
He tries to stop the pills
But each step that he's taken
He discovers he has no will
He wished his mind was stronger
His feelings more secure
but how to find his place in life
Is more than he can endure
He tries to seek the answers
but finds no excuse
For why he does the things he does
His body's constant abuse
Some day his world will better be
Some day he'll feel accepted
But until then, what we will see
Is a mind that's not corrected.


Few struggle to climb the hill
Less then few make it
Those that make it are gravely disappointed
For what they thought would be
reached isnot what they encountered
Oh yes! The riches where there, the fame and attention
But freedom was gone, that was the payment
Freedom to eat in peace, to walk the beach unnoticed
Freedom to shop for one's own food, to dine with friends
True friends were gone, replaced by greedy people
To be noticed as a person, not a God or thing
Once you have made it up the hill, you can never return
For to try to descend would leave you a shadow of what you once were
I dream to be up the top of the hill, the fear of fame does not scare me, but thrills my very soul
What keeps me down the hill is love
Also I know that my veins havenot turned cold enough, cold enough to make the venture.

Smile
If I could take the smile from certain people and install them on my bedroom wall
I feel I would never be depressed again
There are those who have smiles that shine a brighter light than the sun
And to view it is worth more to me than a view of the future
I need their smiles to see me through those days when the world seems dismal
Dark and bleak to the depths of my soul
I do not seek depression, it seeks me
To cast it out is more work than I've ever encountered elsewhere
Those certain smiles cut the work in half
I fear without them, I would never escape the dark and dreary days
But be trapped forever, and never see the way

Happy Hour
To drink until your mind is boggled
what fun to be so stoned
but then alas you sense a difference
you feel that you're alone
the feeling comes on stronger
the room begins to spin
you feel your stomach churning
everything is out that was in
The color isn't pretty
the smell is really gross
the people all around you
they know who had the most
you hang your head embarrassed
go home and try to sleep
swear never to go back there
but soon it is next week
the embarrassment is gone and happy hour is near
maybe you can gibe it up
but you will wait until next year

1982
I am embarrassed to be white
as there are those who are embarrassed to be black
I am human, more than I am white
They are human more than they are black
I feel sadness to see fellow humans treating each other with useless hate
to march in robes of virgin white, for the sole purpose of hurting other humans
is the saddest event of all time
I cry when I look around, I fear what the end will bring
There is no way to change, it has gone too far and far too long
There are evil and good humans in very race, creed, and color
judge not the skin but the soul
it is so hard to be good in our times, don't knock down those who are
Those who will pay in the end are the children yours and mine.

1984
My God is good
He knows my weaknesses
He looks into the depths of my heart and leads me
Though I was lost in a hole of depression and misery, He lifted me out with ease
He gave me the gift of faith through salvation in our Lord Jesus Christ
How to repay such a gift I know not.
He lifted my burdens
He quited my fears
He put love in my heart and showed me the path to take
He gave me strength to face tomorrow with hope and joy to live today
May I in wisdom learn to do all his wishes and show the world the glory of my God
My God is good.

Wednesday, June 29

I believe we have little time left

I was at my moms tonight until pretty late.  She was very restless around 12 until 12:45..  She finally fell asleep and I left around 1:20.  Boy what a horrible process it is to see someone that you love slowly pass away.  My mom is still aware of everything and still with us mentally sortof.  She told me tonight how much she loved me and when I told her she was my best friend, she smiled and asked "really?"  It made her day.  I know that it is only a matter of days that I have left with my mother and I did not expect how hard it would be for me.  The realization that I won't have her to snuggle with or to hold really bothers me.  Even hearing her calling my name or saying I love you.  I really do not want to lose my mother.  I know that she is suffering and will be better off but she is not ready to go and I am not ready to let her go.  She is scared that she is dying and she told me she does not want to go.  She wants to be there for her grandchildren and I think she feels robbed sometimes of the time she had with the children.  I want to scream so loud and throw a tantrum because I want my children to know their grandmother. I have fallen in love with this new mother who at first was such a stranger.  She replaced my mother that I had known all my life and as strange as it is to say, I love her more as she is now.  She is so loving and so calm, humorous and silly.  I feel so loved by her and feel that she is proud of me, something I tried to obtain my entire life.  I do not want to lose her and I see her slipping farther and farther away.  I am thankful that I am a believer in Christ and know that one day I will see her again but it is the unknown that is so hard.  No one knows how heaven will be and I do not know the type of relationship that we will have. I do not know how people that do not believe in eternal life can deal with the finality of death.  I also feel for those that lost contact with my mother during this disease.  They missed out on such a wonderful woman.  She was so different than the woman she was. Granted early on she was quite a pill, but these last few months, she is amazing.  I cannot believe she is only 58 and her body has wasted away to make her look like she is 80. My gorgeous mother has become a corpse, an emaciated living corpse that trembles and shakes constantly.  I spend my days with a wall so strong that I can separate myself from the reality of her death.  I can speak of her dying without shedding a tear and can spend time with her without breaking down.  It is here as I type that the tears fall freely, no one to see my stained face, no one struggling with what to say to me to comfort me.  There really is nothing you can say that will comfort someone who is faced with a dying loved one. I am sorry makes no sense-why do people apologize for something that is not their fault. I do appreciate those that are praying because that is about all that can help.  Maybe it is the realist in me, but I actually appreciate those that do not tippy toe around it and speak frank about her death. Those that want to know what is happening to her and not afraid to offend me.  I do not need to be comforted, in fact that makes me feel more awkward.  She is dying and there is nothing I can do but watch and love her.  Her body has started the dying process, of that we are sure.  She goes days without any bowel movement, days without urine, days without eating.  She now weighs 89lbs and if you see her legs, they look so thin and frail.  Her feet are slightly cold to the touch and have begun discoloring.  Her skin is flaking around her nose and forehead.  Her blood pressure sometimes drops pretty low 95/53 with a heart rate of 115.  Sometimes she is completely normal with a 128/73 and 89 pulse.  Her temp is 97-98.  She is agitated and fidgits more often.  Her body trembles continuously with sudden violent tremors.  Her feet never stop shaking.  Her eyes are glassy and often she stares vacantly.  She sees people that she is afraid of and other hallucinations.  She states that something is wrong with her and feels like she is dying. Her body is pretty rigid and her urine when she does go is brown  like ice tea.  The most tell tale sign that she is dying is her smell.  I do not know if anyone has ever experienced being able to smell illness or death.  For some reason, i always know when my children are going to be sick because they start to have this scent.  It smells like a hospital.  I do not know if anyone else understands the hospital smell but it is the smell of an iv line or iv fluids.  Very sterile very clean smell.  It is not unpleasant, but rather almost a pure smell.  Well for awhile my mom was smelling very bad-bad body odor, bad breath.  Today was the first day that she did not smell bad.  Her breath had the medicine smell of a hospital an odor of death.  I noticed the scent on Saturday but it was very light.  Today the scent oozed from her.  I also notice that her dog comes up to her a lot more and stays with her more often.  I hate that the signs of her eminent death are here-I really do know that I am not ready for this and am going to have a difficult time with it.  She has been our life for so many years that I really do not know what I will do with myself.  I know I am going to have to get out of this town for a few weeks or even a month.  I do not want to see her house, her stuff, or antyhing else to make me think about it until I have had time to process this.  Keep us inyour prayers and hoepfully Iwill regain my stoic attitude because it is a lot easier to deal with it that way.  Thanks for listening to my vent.  Also a lot of people have asked how they can help me.  Honestly, the best way is to cook somethign or come help me clean.  I have not cooked a decent meal in over two weeks because I would rather spend my time with my mother.  So if you want to help, cook for us or bring meal cards-that is the best gift you can give.  Are you not proud of me, I am actually letting people help me out :)  Thanks again!!!

Friday, June 24

Kidney Failure

So since my mother's and my birthday, things have taken a downward spiral  with us guessing and trying to sort out our emotions, problems, health issues.  We have become medical detectives trying to figure out what is wrong with my mother since the family doctor has obviously washed his hands of her.  She started having trouble walking on Wednesday morning and trouble communicating to us.  She would see things that were not there and was extremely nervous.  She stopped eating food on Friday  and did not resume eating until Monday night.  Even then, she only ate a few bits of food.  She barely would drink and became so out of it as you can see by the videos that my brother and I posted on youtube.  She only would only go to the bathroom once or twice a day and would have such little output.  She seemed to be getting better or was more clear on Tuesday past but then slipped again.  She can no longer walk, is having difficulty sleeping at night, and does not want to eat still. She is also very agitated and seeing things.  The final thing that freaked all of us out is the other night she started shaking.  I mean the entire body shaking as though a great chill was traveling to all her extremities and there was no way to warm them.  As of today, she has not had any urine output since yesterday at 3pm and has had very little to eat or drink.  I started extensive searching and here is what I found.  Unfortunately, it meets all of her symptoms and in her condition, it seems pointless to even try to treat this.  My mom on dialysis? Yeah right she would never agree to that. I just cannot fathom one to two weeks until her death.  I really am not as ready as I thought...

Loss of kidney function leads to serious illness, affecting many aspects of physical well-being. The kidneys filter by-products of body chemistry and adjust the amount of liquid in the bloodstream. Many people have progressively diminished kidney (sometimes called "renal") function as they grow old, but usually this slow decline can be managed with diet and drugs. When the kidneys fail completely, you cannot live for long unless you have dialysis or a kidney transplant. A transplant that works relieves the person of kidney failure. However, transplants are not always available, appropriate, or successful. Dialysis is the name for the process of artificially replacing the main functions of the kidneys. Hemodialysis refers to filtering the blood through a machine; peritoneal dialysis refers to using fluid exchanges through the abdomen. Either procedure can be used to sustain life for years, but they do burden you and your caregiver, and each procedure has complications.




Sometimes a person whose kidneys no longer work decides not to continue or even not to start dialysis and to let death come from kidney (renal) failure. If you are considering this option, you need to know what is likely to happen. Usually, dying from kidney failure is fairly gentle and most symptoms can be suppressed. The characteristics of your renal failure and your other medical problems help to predict which symptoms may arise.



As the by-products of the body's chemistry accumulate in renal failure, these substances cause an array of symptoms. You almost always lose energy and become sleepy and lethargic, but you may find it hard to sleep at night. Over time, the typical patient just slips into deeper and deeper sleep and gradually loses consciousness completely. However, early on, mild confusion and disorientation are common, and usually require only reassurance as treatment. Sometimes, though, upsetting hallucinations or agitation arise. These can be treated very quickly with tranquilizers and anti-anxiety drugs. Certain minerals in the blood-stream can also accumulate and cause twitching of muscles, tremors and shakes, and even seizures. The tremors are usually of no importance to your comfort, but their onset can signal a need to prevent seizures. Medications to prevent or treat seizures are usually quite effective. Some patients develop mild or more severe itching before they become too sleepy to notice. This can be treated with creams, massage, erythropoietin, and antihistamines. Sometimes a fine white powdery substance covers the skin, but it is not the cause of itching and is of no importance. Appetite decreases very early, again to no one's surprise. The accumulation of acids in the bloodstream causes rapid, shallow breathing; this is not an uncomfortable feeling, and the rapid breathing is not changed by oxygen.



Many people with kidney failure pass very little or no urine. If you pass little urine, without dialysis you have to be careful to avoid problems with salt and water overload. Restricting your fluid intake to less than one quart of liquid a day will keep you from having much trouble. Fluid overload results in swelling of the body (edema), particularly of the legs and the abdomen. The excess fluid can also cause congestion of the lungs and the heart, leading to rapid breathing and shortness of breath. Sitting upright helps relieve the breathing difficulties, at least for a while, as it shifts the fluid away from the chest and toward the legs; it may be impossible for persons in this condition to lie flat. Oxygen and morphine may also ease any feelings of struggling to breathe.



It is important to know that persons with some urine output have lived surprisingly long times after stopping dialysis - sometimes for months. People with no urine output are likely to die within a week or two. If this is your choice, or the choice of someone you love, try to be sure that you have a doctor and nurse who are familiar with the problems that might arise. Make sure that medications to treat those problems are readily at hand, especially if you are in a nursing home or at home. In such situations, having a knowledgeable and experienced hospice team involved is often worth exploring, as they will make it their business to get you any urgently needed medications. You probably will have a kidney specialist by this point, and that doctor may be a real help both in making decisions and in keeping you comfortable. So, on the whole, when you have to die, allowing kidney failure to take its course is not generally a hard way to go. In years past, before dialysis, kidney failure had a reputation of being a gentle death.

Tuesday, June 21

A bit better

So today mom ate 6 bites of food, peed 2 times, and finally had a bowel movement.  She still can barely walk and as you can see from this video, is looking pretty bad.  Sheis still aware of everythingthough and that is both the blessing and curse that I continue to write about.  She cannot see well at all now and I am left wondering whether it is because she cannot see or cannot register.  Iwill blog a bit more tomorrow or Wednesday.  Not feeling up to it at the moment.  Night

Monday, June 20

What to do

This is from today
http://www.youtube.com/watch?v=c4zkHZ5hZxQ

http://www.youtube.com/watch?v=mcVSPe3jmrU&feature=BFa&list=UL5BTQUCgD8ak&index=23

Update for everyone:  My mom has not eaten for three days, has not had a bowel movement in days, her urine is the color of tea and she only is going two or three times a day, she does not want to drink much and we have to try pretty hard to get her to drink, she is able to shuffle still but is stooped over, she occasionally can sit on her own, is very disoriented and does not know how to navigate her own house.  Something happened on our birthday that changed her. On Tuesday night she was still there slightly and on Friday she was a completely different person.  Kevin noticed the change on Wednesday so we realized it was after I left on Tuesday night.  I started to observe her the last few days and am making an emergency visit to her doctors tomorrow.  Dad, Kevin , and I are kinda shook up and not sure what to do.  This came so quickly that we are not ready.  There are so many questions, like do we force water and food on her, get all the testing done to see if it was a mini stroke or UTI or other issues, do we give her a suppository to help with the bowel movements, do we get home health...So many questions.  selfishly I want to but I think she is better off to just let her body take over and just hold her hand through out.  Tomorrow we will have some answers!!!

For friends and family:  My mother does not want anyone to call her if you have notbeen calling regularly.  You can call me, Kevin, or Dad.  ...If it changes and she wants to hear from you, we will let you know. 

Friday, June 17

My mom is dying I believe

What to say and how to say it...My heart has been torn, twisted, and completely unprepared for what I encountered tonight.  To see what happened to my mother in two nights shocked me into total disbelief and slight depression.  Normally I am mentally and emotionally prepared for my nights with my mother but this time, I was blindsided.  My eyes are moist and cannot stop tearing up.  I cannot even look over at my mom with water dripping down my face.  She is a living corpse a zombie .  Her face is so hallow but the worse part is the zombie shuffle, her face tilted sideways, her back hunched over, and a slow shuffle.  Except that the slow shuffle only allows her to walk three or four feet until her entire body is shaking and she starts bending more toward the ground and almost falls over.  Here is what : My mom slumped in a chair barely able to support herself in the chair.  She could not speak but made incoherent mumbles.  she trues to tel me about her falling out of her bed and how scared she is. she tells me she will never go in there because "they wanted to kill her"We try to figure out a solution too this dilemma and she says she wants Dad's bed.  I decide to show her the room and let her try out the bed.  Imagine my surprise to figure out she can not get up out of the chair.  Not only that but even when I lift her up, she shakes and looks like she is on a tight rope.  She starts to slip like she is falling and I place her back in the chair.  She tries to walk again and cannot.  She has completely forgotten what to do.  So Dad leaves to go get a wheel chair.  During this time, I talk her into moving the king bed from the guest bed to her room.  She agrees and I fly between the rooms.  I can now boast that I can break down a queen bed, break down a king bed, move king bed into one room, and set it up in less than 7 minutes.  Give me 11 and I could have set up the other room.  It was only when dad came home that we were able to put the bed in there which took the 4 minutes.  Well bed was now in place but the question was how to get mom to the room.  I somehow talked her into letting me carry her to her room.  It was not as easy as I thought it would be.  She was dead weight and it was kinda hard not bumping into stuff.  I made it to her room and placed her in the new bed.  She loved it.  I actually got a smile and then she asks me to call my brother to tell hi m that she let me carry her.  She was so proud of herself.  Dad came how just when mom decided to she had to use the restroom.  We try to get her up and it takes over 35 minutes to get her in the room and on the toilet.  We actually had to force her on there.  She finally peed.   which may have been the firs time she peed all day.  she made it back to the bed and she let me pick her up to get in the bed.  Before that she tried to sit on the bed and almost fell.  I had to catch her as she folded in half.  So here is the changes in my mom.  Her head is tilted sideways with her hair in her face.  She cannot see where she is walking-bumping into the baseboards, corners, walls in the few steps she takes.  Her back is hunched over with her right arm completely stuck to her side.  She tenderly steps one foot at a time testing the ground beneath her and scared to trust in her senses.  She cannot follow sound.  She keeps her eyes shut most of the time.  She does not want to eat tonight, she barely wants to drink (but thankfully she let me give her some juice).  She stayed in the bed most of the night-I brought everything to her.  At one point, she was extremely interested in conversation.  She told me she is dying and everything is hard.  She also said she does not want to die.  I will admit that I broke down quite  a few times tonight-she is there. She is completely aware and I hate that.  Watch the videos and you can see how far out there she seems and yet when we decided on a movie (the holiday) I could not find it.  All of a sudden she says oh wait Kevin and I watched it today.  There it was in the dvd player.  Someone please explain to me how she remembers that and yet she looks like she does in the videos.  After seeing the change in her from two days until now, I will be surprised if she is not totally bedridden in less than a month.I also would not be surprised if she is getting ready to pass.  She is not eating, not peeing, not having bowel movements and is slipping away so quickly.  As much as a blessing that this would be for her, I question whether I am ready for this.  I think about her death all the time and often pray that God would take her.  But seeing her tonight made me realize that it is sooner than later that her presence will no longer be there and I don't want that.  I feel so torn between having my mother and letting her go.  Even though she is such an empty shell, she is still my mom and I feel so blessed just to hold her in my arms and tousle her hair. 

Monday, June 13

Happy Birthday


So tomorrow is officially my mother's and my birthday and something must be seriously wrong with me. Why do I truly dislike my birthday. It is not the fact that I age because I really could care less if I get older. I think it is the attention you get and the need to continuously say thank you. I hate the gifts and the cards. I even find it slightly busy when the phone constantly rings from all the well wishers. Especially since the only response you can say is oh Thank you for calling me. Maybe I hate it because it was always a day I shared with my mom which meant that I had to either spend it with mom and do what she wanted to do, or have a miserable birthday. When I was little, my mom would throw birthday parties and do amazing things don't get me wrong. But after my 7th grade birthday, it basically became a mother daughter day which most teens absolutely hate. With the exception of my 21st bday and last year, I had spent every one with my mother. Kinda crazy. So it is fitting that tomorrow is a Tuesday night and I will once again spend my birthday with my mother. We have decided to tell mom that it is our day and see if she can enjoy one last bday because I am pretty sure that is what she has left. I uploaded a clip on youtube from when mackenzie was around 18 months roughly 3 1/2 years ago. (I finally entered the tech world of youtube videos-my user name is peevzy)Look at the laughter in her eyes and the smiling body language. Mackenzie was her light, she shining joy. My mom could be in the worst mood ever and when Kenzie came around, she became an entirely different woman. Even to this day, Kenzie has that effect (usually only when Mackenzie is being sweet though). Isn't it amazing how different she is in just a few short years. It is hard to believe that she was still functioning so well. In fact I believe it was mostly her crazy behaviors, fine motor, and grammar that were sliding downhill.



On a side note, if any of you have not had the pleasure of seeing memory people on facebook, please take the time to check them out. They are a closed group at the moment but once you are accepted, the world of Alzheimer's comes at you full force. You are surrounded by wonderful people that are experiencing much of the same things you do during the course of the Alzheimer's deterioration on you or your loved one. They are sympathetic, considerate, and ready to offer some advice or support.

Wednesday, June 8

In just a week

Amazing how quickly my mom can drop in just a few days. It seems like this week there has been such a difference in her abilities.  Just when I think there is really nothing she can do, I realize just how much she was able to do and how little she can do now.  Amazingly enough, she is still pranking us, still reminding us of things, and still able to tell us how she is feeling.  For instance, on the First of June my little girl turned five years old.  Mom wanted to see her on her birthday so after school, I brought Kenzie and Connor over.  About thirty minutes after the cake,my mother looks at me and says "when the when we go you know the car to bllalalblblb (blow) when sing" Inside I am thinking ummm we already did the cake and we did it here.  I tell mom that we are not going to my house in the car and that we just blew out the candles.  She gets slightly upset and says it again.  After my expression gets even more quizzical, she starts laughing and says got you.  She knew we did the cake and just wanted to mess with me.  After that day, she became zombie mom with no expression, total confusion, and now is afraid of the people that come in her room that she knows are really not there.  Tonight, she told me she is afraid of the hard wood floor because of the lines and maybe that is where they come from.  She hates her big blanket because she gets trapped in it and noticed that the garbage can was turned around the other way(which freaked her out and took me about four minutes to figure out what she was bothered by).
So tonight I arrive there and mom is pretty much expressionless.  She is shuffling around looking at things and asking me what.  I lead her to her bed so that I can clean her nails and toes.  We then travel to the bathroom to do our waxing ritual.  Yes, she still lets me wax her face.  The sick thing about it is that she finds it amusing.  After I apply the strip to her face and yank it off, she exclaims AHHHH and then smiles with a slight laugh coming out.  Each time we do it she laughs.  The even sicker part is that after her turn, she reminds me that I must do it.  She waits and watches to make sure that I apply the strip to my own face and pull it off.  She gets an even bigger smile on her face.  Slightly morbid  Mom.  From that point on, she becomes expressionless and confused again.  She wants to watch As good as it gets so I put it in.  Two minutes into it she wants Devil wears prada,  Put it in wait to minutes and remove. Put in As good as it gets, watch two minutes, and remove.  Repeated this with each move 6 times for a total of 44 minutes.  Finally I tell her wait ten minutes and she gets into the movie.  She tries to tell me something but keeps forgetting. Another thing is that she no longer opens her eyes during the movie.  The entire time, her eyes were shut but she was not asleep.  She seems to have a hard time seeing things now or sees them completely different than we do. About 3/4 through the movie, she looks over at me and tells me she is going to be scared when the movie finishes and how she wishes we had one more movie.  I decide eh why not and tell her I would watch another with her. Her eyes open up big and round and she opens her mouth with the most surprised expression ever.  She just stares at me and then says oh thank you thank you than k you.  It is for those moments that I live for.  She becomes alive again.  In fact, she goes right to the bathroom and takes her pills so easily.  Dad comes home and she starts to tell him different things about the room or what we did.  Dad compliments her on looking so pretty and asks her where she is going-what hot date she has.  My mom looks at him and says "to your room" .  My jaw almost dropped to see her flirting with him.  She twinkles in her eyes and smirks a little.  She ended up falling asleep about 1/4 into the movie and I left her sleeping for the first time ever.  It is so unbelievable to hear the way she understands everything. She is so trapped in her mind and in her inability to speak and she recognizes it.  Tonight she told me she was so afraid at how quick she was going.  She did not want to die yet and miss out on Kenzie.  She felt her body slipping away and she hates it.  It takes her about 15 minutes to express this to me but in the end, I felt such anguish for her.  How hard it must be to know that you are completely useless.  She also told me that it was not fair that dad was able to walk, talk, and do whatever he wanted while she wasted away.  She wanted to be able to do things with him and with us.  She was pacified when I told her it was she that got to visit with Kevin and I. 

Well good news:  I am emptying my plate abit.  Jason and I reevaluated our situation and realized that something had to give.  Youth for Christ takes over our program for teen mothers in September so it was that program we decided to end early.  That means I will have a great deal more time on my hands.  I also am starting my mentorship to become an Infant Toddler specialist  which will be fantastic.  Well once again it is late and I have a busy week ahead of me so I need to get some sleep.  Please say prayers for our last teen mom that had her baby 5 weeks early. She is doing well and baby is in the Nic unit (also doing well).  Good night everyone!
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