RSS

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.
There was an error in this gadget