My name is Carolyn I am a Caregiver for my husband Chuck of 46 years.
Tuesday September 1, 1999
Well another month went by and it is September 1, 1999 I went
to bed late but slept until 6:30am. Got up and dressed curl my hair ate
breakfast ready to face the day. Denise called we talked she is going to
down to see Sommer and the new baby. Took Paige with her will be back September
7, I am going to Wal-Mart and get the oil change so it will be ok when
I go to Penna.
Lord you are starting to bring my old friends back into my life
another one called me This morning we had a good conversation. I am not
hurt anymore the healing has Taken place a long time ago. I won’t look
back or to the right or to the left just straight ahead. You are directing
my path and I thank you. The house is clean all my work is done and the
oil is change I am all packed I can pick up And go any time.
Called Chuck he sounded good he said he was fine and I told him
I would see him tomorrow and told him I was going to see Ellen. He said
that’s good I said you don’t care he said no not sure he know what I meant.
It is 4:00pm and I am tired will go take a nap.
Thursday September 2, 1999
Good morning God, I did sleep very well last night but still
got up at 7:00am feel rested my friend called me last night and that really
help to calm me down. I felt a lot better and fell to sleep fast.
Will try to get things together today and have a better outlook
on things. Thank you Jesus… Talk to my niece will see her when I go home
Saturday Nothing much to write now will see how the day goes don’t want
to be confused about feelings need to sort out things…My life well I don’t
know where it’s going so I have To take one day at a time and enjoy my
life and friends and family. Went to eat breakfast and the car was making
a grinding noise I thought might be the Brakes or transmission. So after
eating and mailing a letter I went to the Buick dealers and had them check
it out. Well since I had gotten and oil change yesterday and the Boy didn’t
put something on right. So they told me to take it back to where I had
it done.
So I did at Wal-Mart so I stopped in to see my senior friends
and we talked then I shopped Found some cute bear flannel sheets for my
bed and the twin bed. Also treated myself To the new millennium Barbie
doll it took the place of the Holiday Barbie.
Then I left and got my drivers license, and the car license have
that all done for another year.
Have to take Chuck so that I can get an ID card since he doesn’t
drive anymore. Also have to renew his handicap sticker the doctor has to
sign it. Came home check the e-mail and answer some talked to Tom he misses
Denise, she called and said the baby is so cute but she is up with him
at night. Talked to char told her I would see them Saturday. Well this
ends a busy day for me am tired going to be it is midnight. Thank you Lord
for a good day. Angels watching over Chuck and I.
Friday September 3, 1999
Good morning world, I am happy today and excited to see what
Blessings God has for me today. Going to an Alzheimer’s support group this
morning. Won’t go away until Saturday plans changed. I though this was
exciting when I Got this e-mail:
"Carolyn,
I found an absolutely beautiful web site that you can be very
proud of. In your hardship, God has chosen to show the world how much love
a person can share as they go through the turmoils of life and time.
I’m copying your poetry and if you say it’s all right, I will
share some it with our devotions. Thank you and God Bless You."
I told him YES. I feel that is why God has given me these poems
to be able to help and share with others. Thank you Jesus this is a Blessing
to me. Went picked up my mail then came home to pay some bills got upset
when I Seen the mail from the Veterans got real nervous an my stomach started
to hurt I was thinking they were papers for the Nursing Home. But when
I opened them it was a questionnaire for the health care and a letter about
how they are going to Change the billing I was so relieved thank you God.
Went to the Alzheimer’s meeting it was very good and told them what we
are doing On the Internet and gave Dorothy a copy of the poem The Army
of Caregivers. She will put it in the newspaper for December. Told them
what is going on with Chuck and shared some of what happen before. Left
and went to the bank to pay the bills and then to Wal-Mart ate lunch there.
Stopped by Lil’s and we talked She is having company over the holiday.
Came home pulled into the drive and the Box that I keep the trashcan was
broken. Well it wasn’t that way when I left so I don’t know what happen.
Came on in to the porch that is enclosed and had three Bags of tomatoes
someone left them. Then Chuck brother Phil stopped as I was caring them
into the house. He wants to pick all the apples and pears and the grapes.
His daughter is coming up and he want to help her pick them. I told him
to take what they want I won’t be home tomorrow going to Pennsylvania.
So someone blessed me and I am being a blessing to someone else.
The trees are loaded and are very good.
The pastor left a note so I called him and left a message told
him I had been away will get back to him next week. Well it is 5:30pm this
will end my day have to get things ready want to leave early tomorrow.
Thank you Jesus for all you have done for me please take care of Chuck.
Angles watching over us. Goodnight.
Saturday September 4, 1999
Woke up at 5:00am got things ready for my trip. Left at 6:15am.
There wasn’t any traffic. Played Christian music all the way and prayed
and thanked God for another beautiful day.
Stopped at Waynesburg Cemetery to see mom, dads, Delores really
miss them it has been a long time. Then continued on my journey home arrived
at 9:45 am Ellen came out to greet me, it felt good to be home. Called
Char she is coming down we are going to Uniontown to see my other sister
and spend the day. I was very confident and relaxed with this trip. Had
many thoughts going through my head.
We shopped and went to lunch then came home and later went to
a movie with some other friends. Had a very nice time haven’t done that
in years helps forget your troubles for a little while.
Stopped at Eat & Park and shared some of my story about Alzheimer’s
and Sammy told me about his dad having it and died three years ago I didn’t
know that.
He will write something for me later he said I told him it could
help someone else. Lord even among stranger they hear of your love and
kindness. I shared with them that through this tragedy you have brought
blessings into my life. I am so thankful Lord that you have opened my eyes
to the beauty in people.
There are no strangers in my life just Angels passing through.
It is 11:30 PM time to go to sleep I have had a full day took pictures
to build memories. Goodnight. Angels watching over Chuck and I and my friends.
Sunday September 5, 1999
Good Morning Lord, I slept very well woke up at 2:30am and then
got up at 9:30am My sister Ellen is already getting things ready for dinner.
I smell the aroma upstairs that’s what woke me up.
Bless her heart she is a very good cook she is 77 years old the
Lord has blessed her and John with good health. John is 86 and still makes
a garden, she will have a house full for dinner today. Will take some pictures
of everyone. It was a very good dinner stuffed chicken breast, mashed potatoes
and gravy, fresh corn, salad, cantaloupe rigatoni and meatballs, tuna casserole
and Lemon merging pie. It was good to be with family but I missed Chuck
he was always with me. I try not to look back and look forward.
It wasn’t to warm today the wind was blowing and I could feel
the presence of God on that hill and with me today. I was talking about
Chuck and we started to cry. Lord I don’t want to talk about it anymore
crying doesn’t solve anything just makes me feel good. It is 8:30 PM and
dark went outside to set and listen to the sound of the night the crickets
Were sing and look at the stars and made a wish…a lot of things were going
through my mind. It was so peaceful and restful have a lot of decisions
to make.
Goodnight Lord angels watch over Chuck and I.
Monday September 6, 1999
Woke up at 7:00am and had a good talk with Ellen she seems to
understand the loneness that I feel. Going over to Uniontown to spend the
day with Josephine.
We left around 10:00am went shopping the out to eat had a good
time enjoyed the day.
Thank you Lord for my sisters they are a blessing in my life.
Came home and I took a nap Then we went over to my nephews house for awhile
came home and set and watched some television then was going to go to sleep
and Denise called she came home one day early was very tired then my friend
called and we talked. Then I went to bed, have a big day tomorrow going
home and go to see Chuck. Goodnight Jesus angles watching over Chuck and
I and my friends.
September 7, 1999
Woke up at 6:00am got things ready and left at 6:45am started
on my journey home it was fine but rained and I missed my exit but got
home ok. Picked up my mail and paid some bills then went to see Chuck he
was laying down. He was happy to see me he knew my name but was very confused.
Denise came and brought the baby’s pictures he is so sweet and beautiful
we had to take care of a parking ticket so we did. Then came back and visited
with Chuck Denise had to leave and I left too wanted to beat the traffic
hug and kissed him and left. A lot of truck on the road went straight to
meet the senior for spaghetti then came home. It was sad seeing Chuck like
that I just cried but it doesn’t change anything. Oh Lord will I make it
through this journey received some e-mail and had a few different people
sign my guest book that is a blessing. Going to bed it is 11:00pm goodnight
everyone angles watching over Chuck and I and my friends. Thank you for
my day.
Wednesday September 8, 1999
Can’t sleep was up since 3:00am typing my journal and talking
to Marcia have a Doctor’s appointment today. My stomach was hurting took
some papaya pills going back to lay down it is 6:00am.
It’s 8:00am getting ready for my appointment will be back later.
Everything went fine at the Doctors office will wait for the report. Came
home and canned the tomatoes and went and picked some apples, grapes, pears
They are very good the trees are loaded and one apple tree split a big
limb broke.
It is very lonely here but I still want to be at home. I need
some time to concentrate on my story. I did take a nap this afternoon slept
for about two hours. Lord I don’t know where my life is going please direct
me and guide me so I will know What I am to do…it’s very hard being alone
yet I know a lot of people are out there by Themselves…It just doesn’t
seem fair all this sadness and hurting…but am trying To hang on and get
stronger…Send something into my life that I can hold on to and Have a purpose
to go on…Life is short I want to be able to make a difference in peoples
Lives…you can direct them to me and we can help one another. I feel like
Alzheimer’s Came in and stole my life from me I want it back. This will
end another day in my struggles with Alzheimer’s and the loneness that
it has caused.
Thank you Lord for another day and Angels watching over Chuck
and I and my friends.
Got up this morning at 5:00am finished the tomatoes and talked to my niece Char in
Pa. The sent my journal to Kate to be posted and then my other niece came on and we
Talked she also is from Pa. Hear some good news from Denise last night and she is so happy about her job. Have all my work done for the day, clothes done house cleaned, I am ready to face the day But it is raining out. Will go to Wal-Mart later take a blouse back it's to big. It's only 8:30 and it seems like I went through the whole day already.
Will call Chuck today and see how things are doing. Loretta is back from Vegas and Anita is going to send me material about what is Available In AZ she is a social worker.
I was feeling sad again tonight crying my heart out…talk to my friend and it help me so
Much I thank you Lord for the friends you have sent me to help me along my long and hard journey. Yet I know there are many people have the same struggles that I am having my heart goes out to them. I do know there is a difference when it is your mate, not that you don't love your mother, father, sister, brother, aunts, uncles whom ever. But your mate it is so different you lost you best friend, your husband, your lover, all the
things rolled up in one. But I did feel better and went to sleep thank you Jesus I needed that support to help me make it through the night. Goodnight angels watching over Chuck and I and my friends.
Friday September 10, 1999
I really slept well and woke up at 7:00am got dressed and ready
to face the day. Ate breakfasts and cleaned up the house. Of course it's
not dirty no one here but me.
Check out the e-mail and then went to pick up my mail. Paid some
bills and went to
Wal-Mart talked with the senior for a little while. Bought
a pair of shoe and a dress that I will use to lounge around treated myself
then came home and rested. I talked to Chuck he didn't know who I was I
told him I was his wife he said he didn't have a wife and was not married.
Wanted to go home to see his mom and sisters and brothers. He is thinking
about when he was young. I asked him how old he was he said 50 and he didn't
have any children either. I ask him who I was he said a friend one of four.
I had to laugh but I was hurting too…so that was my day posted on Passage
about the Life's Clock it is a good saying. I sent for forms for my poems
they are will be all registered in a book title not sure yet Also the title
of the book will be covered. So I did accomplish a lot. Will that ends
my day Lord it is 5:00am and will go to bed early. Thank you for the day
ooops I forgot one of the seniors left me some more tomatoes bless his
heart. I wasn't home. End of a good day thank you Lord and Angels
watching over Chuck and I
Saturday September 11,1999
Woke up early again ate breakfast then went to Wal-Mart set with
my senior friends and talked about things. Then went out into the store
and shopped the ate lunch and went to see Chuck he is getting very good
care he doesn't know who I am but I know he knows something when I walk
in the room his eyes light up. I sat and talk with him like he understood
every word I said. Told him how proud he should be that I'm able to find
my way up to the hospital by myself and have confidence that I will be
ok. That how happy I am that he made me take up the computer back
when I didn't want to. He had said maybe someday if something happens to
me you will need to know about computers.
Little did I know it would be a LIFELINE to me. I told
him that how much the computer and my support group help me get through
the hard times and still are. He smiled and said........ I want to go live
with you. I said you don't know who I am....... He said that is ok... I
ask him why??...... he said so I won't be sad.......He thinks I am a friend
one of four that is what he told the nurse. Took some fruit from our trees
for him to eat and grapes he doesn't remember he planted them many years
ago. But was happy I told him about it. He didn't eat lunch yesterday but
he did eat the fruit. While we were at the table setting and he was
eating the fruit I was writing that poem "Answer In My Heart" he ask me
what I was writing and I told him a poem. I explained that something good
has happen out of this terrible illness about all the poems the Lord has
given me and the Web site........and how new people has come into my life
to help me get stronger.........I'm not sure he understood but I did talk.
Later when I took him to his room he wanted to lay down. He had tears in
his eyes and look at me and said this is the best day I have had in a long
time. I hugged him and touch his face so gently and said to him there will
be many more days like this and told him how much I loved him. It has been
very hard for me to come home after seeing him. I do nothing but cry.
Then I was told about the Movie A Cherish Vow hadn't seen it
don't feel I could handle it right now. But from what I was told it was
very upsetting to me. About not putting them in a NH and taking care
of them at home. I don't have the help here and I have tried my best. Right
now they are monitoring his medication and I am getting much need rest
for my own health. I was declining physical, and mentally. Each life
is different and some have the money to have good care at home I don't
and I am not ashamed to admit it. I have been through a lot of illness
with him since 1981 and the last 6 years with AD but the last two
has been a nightmare.......I will know when the time is.... RIGHT.....
for me to take the next step. GOD KNOWS MY HEART......I don't
want to feel guilty like I do now about me getting the rest I
need. If I didn't then if
something happen to me he would be in a NH anyway. I have
kept my vows for 46 years and been a faithful wife but I see that
I have to be able to go on without him......I will always see that he has
the best care and will always love him. But I can not live in the past
and have to face reality that life does go on...I am not there yet.....
Yes I will bringhim home again and see how things go but if it doesn’t
work out I will be
ready to take the next step I will not have a 48 hour day again.......We
use to talk about things and he said for me not to cry and to go
on with life.... if something happen to him I had said the same thing
to him. I would not want him to struggle with all the problems that I have
gone through......I know he loves me and it will always be there in his
spirit even though he never tells me....Have a son that hasn’t talk to
us since last November he can’t handle his dad that way so mom has to suffer
to. They don’t show that in the movies.....Just had to get something
off my chest today...Again I say there is no pat answer each life
is different some are passive and some are hostile. I lived through
the hostile state and don’t think for a minute that if you call 911 for
help that they will not arrest them if they hit you....... I don’t know
about any other state but in Ohio I know...... I lived through it three
months of a living nightmare. Alzheimer’s had to rethink what
they tell people because Before if you called they would tell you
to call the police. They can’t say that now.......we were the first
to go through the court under that law Domestic Violence.....another long
story. They came into my home and I had no rights and Chuck had none. I
didn’t sign any papers didn’t have to ....IT WAS THE LAW... I told them
about the illness and he was treated like he had killed someone it made
no different to them. This is some of my story only that is what I know
about each one has a different story to tell..... It is very late need
to go to sleep. Cried a lot today but Tears are good for me. The end of
another day in the Life of aCaregiver. Goodnight Angels watching over Chuck
and I
Woke up at 5:30 am slept pretty good took a shower and did something’s around the house The got ready for church Lil & Chuck are going today. Denise called and I was crying told her about her dad and what he had said. She was sick and had got to the hospital her eye was swollen shut. So she wasn’t going to Church today.
I went and was so restless and sleepy couldn’t wait to get home. Lord don’t know what Is wrong with me today? Took a nap then Denise called to see how I was and we talked for a little while.
Was on the computer talking to Starr and BumbleBee we had a good talk and we both Was feeling down but then Starr made us laugh so we are fine now. Talked to Lil and now I am ending my day I just stayed home all day didn’t want to go anywhere will try to go to be early.
Goodnight Lord Angels watching over Chuck and I
Really slept good and got up at 7:30am got dressed and check the e-mail then went to Wal-Mart to be with the Senior Citizens some of us all different meet everyday and Talk about the events going on shared with some about the Alzheimer’s and the things that has happen in our live with them arresting Chuck. I was never able to talk about it but now feel it is time to start posting on the Internet and the Alzheimer’s section. Then went to K-mart for the Holiday Barbie but they didn’t have it. Stopped at Optiview to see how Sue is coming along got some things to hand out at The birthday party Wednesday. Then stopped at the Library to look for a book but they didn’t have it. Came home ate dinner and worked on the computer a little bit. Denise called and we talked. Then Lil called so that was the extent of my day. We had a lot of rain but it is nice now. Heard from Debbie and she told me how nice it is that I am able to express my feeling Like I do. Well for years I never was able to but now it seems the Lord has open my heart to share things and I have a better understand of life. Nothing else is going on will write in my book tonight. It is very lonely here without Chuck will go see him tomorrow.
Well did go to bed early but was woken by a call from Chuck the nurse dial the number it was a little after 8:00pm. He wanted to talk to his mom and have her come and pick him up after school. I told him it was time to go to sleep and he said he did sleep already. We talked I asked him if Denise called and he said no I then ask him if he knew who she was he said yes his daughter. But he didn’t know who Carolyn his wife was. I just asked a lot of questions if he was treated good, and if he is eating good and he said yes. I then told him I would be up to see him tomorrow so I will go and maybe take him out for awhile and see how he does. Then I couldn’t go back to sleep it was 2:00am before I fell asleep again. I can see Lord that with this illness my heart can never be free my thoughts are on him and What will happen next in my life. Help me Lord to understand and be able to go on. Direct my path and lead me I pray. Well try again to get some sleep it’s late . Thank you Lord for another beautiful day. Angels watching over Chuck and I and my friends.
Woke up at 6:30am and said Good Morning Lord I am ready to start the day with you guide me and help me touch someone’s life today. Help me to be a blessing to them.
I posted on the Alzheimer’s site last night waiting to see if I get any answers. It will be very interesting I will see where the people are in this kind of situation. Called my special friend last night and we had a long talk about things but no answers. But still it is comforting to be able to open your heart and share how you feel.
Will go up to Wal-mart again this morning and then to see Chuck.
He is doing fine and I am not again same story different day. Came home and took a nap and later was on the computer got some responses on the Message I sent. They were good answer. Lord I want to be a servant to help other ones Going through what I am going through.
Talked to Denise and I got my message line and it is working now the phone company Has to check out something tomorrow.
Stopped by the Library and pick up a book am studying it now. Laura made a B.Board for caregivers to sign on to. Will finish it tomorrow that was great of her. It brighten up my day since I was crying again. Lord when will this Stop hurting? Going to bed early tonight thank you Lord for the day and angels watching Over Chuck and I.
Woke up at 7:00am took a shower getting ready to go eat then to Wal-Mart for the Birthday cake. Answered some mail on the computer and then left. Came home had a great day, we all had a great time at the birthday party a lot of fun And laughter. The cake was delicious white & chocolate plus had strawberry filling In it. It was decorated beautiful and I took a lot of pictures. Left the film to get developed. Will pick up tomorrow.
Took a nap and answer the e-mail again then went to see Chuck took him a piece of Cake he was laying down and said to me Hi Babe, I said hi do you know me today he Said yes you are my wife. What is my name he said Caroline he was correct but didn’t Know he was married or had and children. I showed him some pictures and he didn’t Recognize anyone but his picture and mind. So I guess that was good. I talked to Lil and ate a sandwich hadn’t eaten all day but the cake. Am really tired Think I will go to bed early again. Laura made the page for me Army of Caregivers For people to sign on so we can sent a list to the different talk show. I pray this will work We need to band together as Caregivers. Well Lord it is in your hands. I thank you for the day and let the Angel watch over Chuck and I. Goodnight
Well didn’t get to be till 1:30am was very tired but had a lot going on a new Web Page For the Army of Caregivers. Laura did a wonderful job and was trying to get the Word out to the different Alzheimer’s groups. This is very exciting and I pray it will all Work out. Have a lot of good people behind this project. Very encourage.
I talked to Tom my son in law last night. Things are going well thinking of the move they will be making in October. Well see what today has in story for me have to go to the lab and get blood work done This morning then will go eat breakfast at Wal-Mart. Lord I pray the lab test will be fine I am in your hands and I give this day over to you.
Had the test done went to eat breakfast then to Wal-Mart talked with a few friends.
Came home and went on the computer a lot of good responces about the Army of Caregivers had a busy day. Talked to Chuck he is doing fine and wants a pass to come Home will see him tomorrow Sue his nurse buzzed his hair short and will clip his nail.
Told her about his teeth she will check it out. Taked to Denise might go up to Cleveland tomorrow or Sautrday probably Saturday Well I am tired and and will call it a nigh. Thank you Jesus for everthing today I have Been blessed whith the new web page. The Army of Caregivers will be on the move. Angels watching over us and my friends. Goodnight.
Good morning World it is 3:30am can’t sleep talked to cybermom then BumbleBee Came on she is in Columbus that’s great has a job interview today. I pray she gets a Job Lord it will be a blessing to her. I guess that that is I why you woke me up to talk to her. Will meet her at Wal-Mart tomorrow I will stay then go see Chuck. Well it is time to go back to sleep.
Marcia called she won’t be here till 6:00pm so I went to Wal-Mart and talked with the seniors.
Came home made some good chicken soup with homemade dumplings for later. Marcia can her mom came we ate and sat and talked she is very nice. She cleaned up my Computer for me then they left she wanted to get home before dark. I stayed up then went to bed.
Thank you Lord for a wonderful day. Angels watching over Chuck and I
Woke up early got dress and went to eat breakfast at Dino’s with the other seniors Then went to Wal-Mart talked to other senior from my group Young at Heart.
Stopped at Ames, went home answer my e-mail not too much happen. Left to go see Chuck.
I was in the nurse office calling Denise when the nurse went to get him. He spotted me and pulled away from the nurse and said there she that’s my wife. He was so surprised and happy to see me. They were having a fun time in the dining room. Each man was throwing a ball into a basket ball hoop. Well out of about 25 men they narrowed it down to three Chuck was one of them that was tied. So that had a chance to do it again but he didn’t win but got a prize anyway. Tickets to spend in the canteen that they have. Was having popcorn and lemonade. So I offered to pass them out to the men a lot of them were so thankful. I was just happy to be a servant and to help. Tom and Paige came to pick me up Denise has a sore throat and wasn’t feeling well.
She had a very good dinner, mashed potatoes, meatloaf, salad, hadn’t eaten like that for A long time but I ate tonight very well. I guess to that I wasn’t alone. Got a pass to take Chuck out tomorrow in the afternoon will see how he does. I pray I won’t Have any trouble taken him back.
We all set up and talked I sent e-mail off to a few friends to let them know I arrived her ok.
Paige was so happy to see me and was hanging on me all night just having fun.
Going to bed now thank you Lord for a safe journey and thank you for the day.
Angels watching over Chuck & I and my friends.
It is 7:30am I had a very good sleep and am refreshed this morning.
Wonder Lord what good things you have for me to day to face. Check for e-mail and had a letter from my friend I am always happy to hear from them.
Will pick Chuck up after church the go out to eat. I will go home tonight and not wait till Monday morning.
I wrote a poem called A New Song In my Heart in church Sunday morning. Not understanding it till last night what it meant to me. How can I have a new song in my heart when I was cry so I ask. But didn’t have an answer then. Do now though.
I had Chuck out for the day. He did very well but it was very stressful for me. He kept wanting to go back to his home meaning his room where all the men were. I was very sad and cried when I was taking him back. I talked to him and don’t know how much he understood but told him how I was feeling since he asked why I was crying and he started to have tears also. I told him I missed him and it was lonely to go home to and empty house. He said to me find someone.....I have someone YOU. I believe he was trying to tell me to get someone to stay with me but never finish the sentence an he started to cry. I wiped his tears and knew that I had to stop crying for his sake. I told him it will be ok he knows something is wrong with him but he is content where he is at. He won a Indians baseball hat and a indians shirt and had it on. We have his head shaved bald he looks very nice. After being out all day I knew he had a good time but he wanted to go home he was ready. He was happy when we got to the floor he didn’t reconize anything till we were on the floor and he knew where his room was. I hugged him and kissed him goodby and left. Yes I cried all the way home don’t know how I was seeing the road. Another stone on that road to get over as I go on my journey around the bend. I not so sure it was a good idea to take him out but I had to know for myself I guess it was just for me.
I have a peace now and know what the Lord was telling me through that poem I will have a new begining it is time to move forward all the way and not look back again.
A NEW SONG IN MY HEART
God has put a new song in my heart today it rings a melody of joy.
This tune plays over and over inside of me Because God has put a new song in my heart.
Given to me from God above,
to show me of his great love.
If you will listen quietly you will hear it too a new song in your heart today.
It will take all the sadness, loneliness, and hurting away, he will gently wipe the tears from your eyes. He will replace it with a new song.
listen quietly and you will hear
this new song in your heart today.
It’s being filled with Love, peace, joy,
you will find happiness again and a new Beginning.
Listen to the melody quietly and you will feel the new Song in your heart today.
By Carolyn Haynali 9/19/99 ©
I got up this morning at 5:30 am after going to bed after midnight but feel fine Posted a message on Army of Caregivers list and sent thank you out to all that sign so caught up so far now. Also sent out some e-mail too. Got dressed going to Wal-Mart then to G.M retiree’s meeting then will be back home this after noon. Put a call in to VA Charles Underwood he will call me back to set up an appointment.
Seen Dot & Bill sat with them it was a good meeting the talked to the President Larry told him about The Army of Caregivers for Alzheimer’s he ask if I would like to speak October 18,1999 I said I would. Then he mentions the group of future retiree’s and I told him to set it up. The will be the first for me to speak out I was so excited to be able to do this. Oh Lord helps me to be strong and not let the Caregivers down. I want to help make a difference. I haven’t posted it yet but did tell Laura about it she was very happy to hear that. I answered all the beautiful letter I have received about the web site and the poems. Tay put another one on her web site called An Angel’s Touch. The nurse from VA called Chuck wanted to talk to someone Lord I talked to him he wanted his mother to come and get him. I told him that his mother was not here that she had died many years ago. Then he asked me who was here to come and get him I told him I was the only one here and it was late will see him in a few days. He was ok with that. I wonder by taking him out if that hurt some way and made him restless. Oh God it hurts so badly and I can’t fix a thing. But I do want to go on with my life. But the nights are terrible, and lonely life is not the same how can you give up a lifetime in such a short time. Death is final, a closer but this is a slow death and torture to the Caregiver seeing the detonation each day in front of their eyes.
Went to sleep at 9:00 pm Denise woke me up at 10:15 pm she was breaking out in hives…we talked and then I go up and was talking to my friend about a lot of things.
Going to bed now goodnight Lord thank you for the day and Angels watching over Chuck and I and my friends. Love you Lord with all my heart.
Woke up at 5:30am and came into the computer to check the e-mail and posted a Message to my support group Caregivers Army. I hope they answer today. Will go to Wal-Mart the have a speagetti dinner then tonight go to a computer meeting.
The computer meeting WAS GREAT I did get a little emotional when I spoke was about 30 people and I spoke about the Caregivers Army and about the site. I explained to them about the struggles, the heartache, and about my 48 hour day. That I was speaking for all the Caregivers in the world and how hard it is and the stress it has on them.
Also told them that sometime in there life they will come across someone they know that has Alzheimers. To be supportive and call them and help them in anyway they can. I said how the Army of Caregivers web site got started and we wanted to raise the awareness and to help get things change through our government.
Funny the topic that was to be decussed was about the Internet. I just fit right in and told them how much the Internet help get through the hard times I was having or I would not be hear today speaking. I passed a paper around and they took the URL down. I really should had papers to pass out to them. But the good news is it will be in the news letter next month I have to have a little story about it and sent it to Joseph who is the president with all the information. Will get started on it as soon as possible they really listen and after I was done a lady came up and gave me a big hug a several of the men came and patted me on the back and said it is a hard road. They did show compassion and I know they will visit the web site.
These are some of what I want to in the future. Newspapers, speaking, make an appointment , with the prosecuting attorney since he told me to speak out and the head of the Sheriff department because of what I went through, and to my Senator Hagen who told me to call anytime I need help and he is backed buy General Motors workers. I will also get in touch with our Ohio Governor, and the Alzheimers chapter want to see what can be done about putting it in there newsletter. Need a standard Letter to use over and over that tells what we are all about.
Cried all the way home Lord I should be happy but I am still crying can’t seem to get It together. I know and I am very thankful for what you have done for me opening doors that I never dream of. So many people have given me encourgement and I am not sure I can do this Help me Lord not to fall.
Went to bed the end of a goodnight. Angles watching over Chuck & I
Woke up at 4:00am and check the e-mail and chatted with Marcia for a little while. Then went back to bed. Dot and Bill are coming this morning to start on the bathroom walls. I also have to go to the doctor’s this morning.
Well went to the doctors he said I am in some depression I knew that…but it is normal for me to be feeling this way Chuck and I have been married 46 years and I just can’t forget about it. We are separated and I just have to get use to it and go on.
I was crying and he said to look at the good things in life and go from there, and a lot of good things have taken place. I am not to look back to the life that I had because it isn’t there anymore. I know that but how do you adjust to the separation, the loneliness, the empty feeling you have inside. In your heart you so want the life you had before but in your mind you know it can never be. So I grieve for you my husband who doesn’t even know how I am feeling and don’t even know me. How can I go on and survive. Yes I know God is with me and will help me get through this. But right now today I don’t feel it maybe tomorrow will be a new dawning and a brighter day for me to see clearly. I need to cry it is good for me and for my soul it is a cleansing process to help me get through the days to release the hurts, the heartaches, the lionesses, the helpless feeling that I can do nothing but to make sure he has good care. But when I visit him it’s so hard for me to put on a happy face like he has on his. A big smile when he sees me and yet I feel somewhere deep inside he does know me but just can’t express himself or make out who I am.
I told the doctor I worry about myself that it’s hard at times to concentrate on things I have to do my obligations to see that everything is done taking care of the house, the property making sure everything is working seeing to it that all the bills are paid. It is like a never-ending day and goes on and on.
Came home took Dot and Bill out for lunch they left and I didn’t want to go anywhere. Lil called wanted me to go out to dinner I know I should have gone but I didn’t. Stayed home and was just miserable shut down the computer and went to bed early. Feeling like closing the computer down for good but know that is not a good choice. I am starting to feel again that I don’t want to talk to anyone another sign of depression. Denise called me after 10:00pm she wasn’t feeling good we talked she wants me to come up and stay with her. The doctor told me to take a vacation but I have no place to go. I just had a nice vacation in Arizona. Fell back to sleep Goodnight Angels watching over me and Chuck and my friends.
Woke up at 5:00am started to finish my journal had a few e-mail for the caregivers army that want to help and I cried again. But will try to answer it today.
We will be finishing up the bathroom and then I will try to go see my Alzheimer’s Chapter and talk to Dorothy about the Caregivers Army. Will try to think of good things today and maybe if I can go see Chuck again. Well I was in no mood to go see Chuck today. Dot couldn’t come today so they will be here tomorrow. So I went up to Wal-Mart had to return something. Then went to talk to Kathy at Alzheimer’s We had a long talk told her about the Caregivers Army she will give me some papers and guideline.
I went to the doctors yesterday he said I am in some depression I knew that........…but that it’s normal for me to be feeling this way Chuck and I have never been separated (of course he has known us for about thirty years) and I just can’t forget about it. We are separated now that he is in respite care and being monitored for his medication and I just have to get use to it and go on. No sure what the next step will be. Doctor wants to do a Heart stress test am having some heart palpitations more then usual. I wonder WHY??.......???
I know I am not going through any more then the rest of you,...... some have been through it, and some are still going through it and some out there are over with it. So you all understand where I am at this time in the Season of My Life.
I was crying and he said to look at the good things in my life that has happen and go from there, and a lot of good things have taken place. I am very thankful for that.
I am not to look back to the life that I had because it isn’t there anymore and never will be. I also know that........ but how do you adjust to the separation, the loneliness, the empty feeling you have inside, what do you do with them?????. Ignore them, pretend they are not there, don’t talk about it, I ask myself that question over and over in my mind. In your heart you so want the life you had before but in your mind you know it can never be..............so sad.
So I grieve for you my husband who doesn’t even know how I am feeling and doesn’t even know me most of the time. How can I go on and survive?I asked that question too............. Yes, I know God is with me.... and will help me get through this. But right now today..... I don’t feel it............... maybe tomorrow will be a new dawning and a brighter day for me to see things clearly. Tears I need them...... to cry it is good for me and for my soul it’s a cleansing process to help me get through the days to release the hurts, the heartaches, the loneliness, the helplessness, the confusion, and the feelings that I can do nothing about. How can I feel one day that life is great and think I have it all together and am going forward. To wake up the next day and feel so terrible and feel that I am going backwards again. How do you really know for sure when you are through this...when it doesn’t hurt anymore or when you stop crying it like it hitting me all over again starting all over again.... But to make sure he has good care but when I visit him it’s so hard for me to put on a happy face like he has on his. A big smile when he sees me and yet I feel somewhere deep inside he does knows me but just can’t express himself or make out who I am.
I told the doctor I worry about myself that it’s hard at times to concentrate on things I have to do my obligations to see that everything is done taking care of the house, the property making sure everything is working seeing to it that all the bills are paid. It is like a never-ending day and goes on and on. A friend wanted me to go out to dinner I know I should have gone but I didn’t. Stayed home and was just miserable shut down the computer and went to bed early.
The doctor told me to take a vacation but I have no place to go. I just had a nice vacation in Arizona he said to go back and visit again I laughed through my tears. That did get a smile on my face but I know I will try to do the best I can and go on. Everything the doctor has told me I knew already and have been preaching it to myself. I am further along then I was a year ago. I had to learn to survive and I will be a survivor thanks to the friends that I have made going through the same struggles that I am. I am very thankful for all that I have accomplished on this Journey and know that I am slowly going around the bend. Thank you for being there for me I will try to be there for you also together we will make it. This is not the end of a story...........but maybe a new beginning. Goodnight Lord Angels watching over Chuck and I
Good Morning Lord woke up at 2:00am stayed up till 5:00 then went back to bed and l slept till 7:30am.
I am feeling a lot better this morning I pray Lord you give me the strength to get through the day.
Sent off some e-mail that needed to be done and getting caught up on my journal.
Dot & Bill are here to finish the bathroom it will be done today and I can go on to the next project.
I guess the problem was when I took Chuck out Sunday I haven’t been the same since. I guess it was disappointing and hurting I expecting to much getting to little in return.
Time is running out and I will have to make a decision soon still can’t do it yet. Like I said before am I been selfish and not thinking about what is best for him?
Went to the Alzheimer’s chapter yesterday and talk with the Social Worker she told me It’s not good to bring him home and then place him somewhere else later. But the thought of him never coming home I can’t handle it right now. I wish the decisions were out of my hands and I didn’t have to make it. That is a lot of what I am struggling with now. I am afraid to bring him home and yet I want him here. Doesn’t make sense to me right now, and the confusion I am all mixed up and he is happy......I guess what is most in my mind is forever being alone. I know a lot of people are alone but don’t know how I will get through it. I am a mess now what will be like later if I put him in a NH?
I ask myself these questions but then I also remember how stressed and tired I was before and don’t want to go back to that either. What is the answer I pray that I make the right choice? I will have to live with it always. I knew I would have these days but I really thought I was through them. Now I know I will go back and forth and then in time it will be less painful. Just like everything else I worry about there is a season for everything and I know this is my time to cry and hurt but it will not last forever. I will survive and move on I will do it and I will work hard at it.
I will make it through and someday I will look back and it will only be a memory and that to will fade into the past. There will be a brighter future I believe in that. I know I really have to let go and let God take care of things that is suppose to be where my faith comes in. He has blessed me with so many things I was able to take the things from my heart and open up and share them with poetry and the journals and maybe someday finish my book. Things that I only kept in my heart have come out in the writing as a release for me. I do feel blessed on so many things in my life so I guess I have to focus on those and move forward.
Well got the bathroom all done then the Social Worker called me and said they will have a place for Chuck will let me know. Oh God I have so many mixed emotions I prayed you would take it out of my hands and now you are. Help me lord I am so tired going to bed now. Angels watching over me and Chuck and my friends.
I couldn’t sleep been up since 2:00 am and as you know with tears in my eyes. I just try to understand about this terrible disease but the ANGER gets the best of me. I guess I have to voice it and then try to let it go keeping it inside only is hurting me and then I won’t be able to go forward. I know this and am trying to DO the best I can. I guess if I was to be honest with myself I just feel so much ANGER inside that I have to go through this valley alone. But I am not alone there are a lot of people out their going through the same thing.
Not sure you all would understand but I will voice it anyway.
THIS IS MY ANGRY LIST:
I am angry at Chuck, because he left me alone, I am angry at myself because I can’t handle it. I am angry at God because he could change things, I am angry at people because they don’t understand. I am angry at my son because he has not been here for me.
I am angry at the word Alzheimers it stole my life from me.
I am angry because they have not found a cure for it.
Right now I am angry at the whole world.
I hate to have to put on a happy face when I am not.
I want to be ME right now this is my Feelings expressed, and MINE alone. How can I get better if I never face up to the things that are bothering me.
If I could have one wish or dream I would choose to have this terrible disease wiped completely away. I would like to go back in time to the place where I had never heard the word Alzheimer’s. I hate that word and am ANGRY because of it. There has not been to many things in my life that
got me really upset but this I have to say is the NIGHTMARE of my life. I can’t seem to wake up from it. It is over and over in my mind WHY, WHY, WHY, but I can’t find an answer. NOW COME ON.... I KNOW THERE ARE A LOT OF PEOPLE FEELING THE SAME WAY I
AM. I AM NOT THE ONLY ONE THAT HAS AN ANGRY LIST:
Let your voice be heard:
Now that I have gotten rid of all the anger and voiced how I really felt. I can turn it all over to the Lord and let the HEALING take place. How can I have JOY an PEACE in my heart with so much anger. Now is the time to release it and go forward and face the things I can not change. To go forward and try to make a difference in someone else life.
Since I got rid of the ANGRY list then I will replace it with DO list.
DO all I can to try to make a difference in some ones else life.
DO what I can to try to get things changed.
DO whatever I can to have the Voice of The Caregivers heard.
DO whatever I can to make MY Love one happy.
DO whatever I can to see HE gets good care. DO whatever I can to see that my son has a different attitude DO whatever I can to make people understand this disease I will DO, DO, DO, WHAT EVER IT TAKES to try to make a difference.
Now that I have said all that I feel a whole lot better:
God Bless
Went to Wal-Mart we had Pie day for the seniors they were very good. Then came Home rested for a while and then went to the Fireman’s chicken dinner. Talk to Bryan wanted to talk to the Chief but he was not there told him about the Caregivers Army. Also talked to one of the Trustee gave her a flyer and she said she was going to talk to another lady that is in charge of the senior citizens. They will have me speak to a group. Well I did all I could for today. Another day tomorrow Denise called she said she went to see her dad and he was fine.
Well the nurse just called Chuck wanted to talk to me. Again he just wants to talk to anyone. We talked for a few minutes and I told him I would be coming up tomorrow to see him. He said ok and then said he had to go. I told him I love him and he said I love you too.
That was the end of the conversation. Lord watch over Chuck and I and the
angels to watch over my friends and Chuck and I. Goodnight
Yes again I woke up at 1:30 am so I check the computer and talked to Marcia, we talked till 4:00 am went back to bed. Just got up now it is 7:30 am had a cramp in my left leg couldn’t hardly walk. Oh lord what is wrong with me this is happening more and more will call the doctor tomorrow. It wakes me out of a sound sleep. I am not low on Potassium just had blood work done everything is fine. Is it poor circulation will have to fine out?
I pray today will be a better day for me Lord I know time is running out and I have to get control of my life. Help me Jesus help me to be a blessing to someone today.
Went to church the came home and my neighbor was cutting my lawn for me and the other one down the road stopped in and told me if I needed anything to let them know that are watching out for me. I really appreciated that and was so glad that they are made me feel a lot better. Lord you are sending angels to watch over me thank you. Went to see chuck and Denise came and we had some hamburgers and fries he really enjoyed them. He is doing fine took some pictures of us then we left I followed Denise home will stay tell Tuesday. We had dinner and sat around and talked then I went to bed. Thank you Lord for a wonderful day. Angels watching over Chuck and I and my friends goodnight.
Woke up early but rested very well will start the day packing for Denise.
Had breakfast and started doing my job.
Denise called I went with her to get things for the day care and we had lunch at the Chinese place I had cashew chicken very good. Then went back home called Chuck he is doing fine. Did more packing the we all went out to dinner at the Ground Round and went to the jewerly store and look at things I needed to get an apprisal and did. Bought a braclet that will be my birthday and Christmas present. I pampered my self for a change. Also got a bear didn’t realize it but it was called huggey bear. I love it have it in my car. Went to bed early around 8:00pm then at 9:30pm Chuck called he wanted to talk to someone that was all he is doing fine. I went back to sleep. Goonight Lord thank you for the day. It was a blessing and I didn’t cry. It is very hard to get through this nightmare. I wonder if I will ever wake up from it and have a life.
Angels watching over Chuck and I and my friends.
Well go up at 7:00am sleep very well and went downstairs to finish packing the rest of the stuff. Wanted to get it done before I left. Called Chuck and he didn’t know who I was told him I was the Love of his life and he said Denise. I started to cry God I don’t know why that still hurts me he can’t help it what has happen to him. Got dressed and got my stuff together and started home and stopped to see Chuck he looks fine was clean and I took him outside and we had coffee and cookies it was a beautiful day and we sat and talked. Took him back in and left came home got the mail and put stuff away. Check the email but didn’t get a chance to answer it yet.
Talked to Marcia we chatted for awhile she is a wonderful person and so is her mother who has AD.
Also went to eat spaghetti tonight with Peggy it was very good. Chuck’s brother called to and asked about him I told him that he is doing fine and waiting for a place don’t really know anything yet. Have been upset but will make it through with the Lords help. Denise called me and told me that I will be speaking at the Victory class on a Tuesday night that is great. Lord I pray that I can be a service to the Caregivers Army and get the message across. Help me to say the right things in your name.
Getting ready for bed another day tomorrow Lord I thank you for the Poem that you gave me on Sunday called I choose.
Angels watching over Chuck and I and my friends. I love you Lord
goodnight
Back to my journal entry page.
