My name is Carolyn I am a Caregiver for my husband Chuck of 46 years.
 
 

Wednesday June 24, 1999

Was up most of the night at 12:00 AM changed him got him back to bed? Checked the e-mail and talked to my sister Loretta on ICQ she lives in Arizona. Woke up again around 3:30 AM he was wet again. I got up at 6:30 and Chuck got up changed him again. Then fixed him a nice breakfast and I took a showered and got dressed. Then my daughter called we talked she always calls and checks in to see how things are. Bless her heart she has a lot of stuff to do herself. I feel bad that I don't have any help in the evenings. I am tired so tired don't know how much longer I can hang on? Lil called and said she tired to reach me last night she always checks up on me. Told her about my conversation with my daughter and started to cry…it is so hard then Chuck started to cry and told me he was crying because I was…Crying won't change any thing but it sure does feels good.   Well I didn't want him to be upset so I told him I was ok. Then the phone rang it was about 8:30 AM I knew the aide wasn't going to come today. It was Carla and she told me the girl called off and they didn't have anyone.  I told her I was upset please see if they could fine someone for a few  hours. She called me back and they have a girl to come out around 11:00 AM. That is fine really needed the help today. Emotionally I was upset and it will be another long day and a longer night. 
Well it is 1:30 and Chuck had lunch and I am trying to get some rest. The new girl is working out fine she is a friend of Tracy's the other aide. I called the agency and told them do the girls understand how important it is for them to be here for the patient… we count on them. I also called VA and talked to the social worker about his respite care in July wanted to be sure it is all set. Also told her about the Agency not getting all the help I am suppose to she will call me back later. The day is quiet so far got some things done. Need to take the clothes to the second hand store. Trying to get things cleared out a little at a time.
Well it is 8:30 PM never made it to the second hand store another day to work on it. Put Chuck to bed he got up and came into the computer room saying for me to come to bed before the other kids take my place. I told him there wouldn't be any body else tonight so he went back to bed. He doesn't know who I am but I could be his mom, sister, shower girl, guy, friend lady, and his wife I never know who I will be. He gets very
confused at night but I try to keep him calm and let him know I am here to stay with him and no one will hurt him. It is awful when they don't know who you are or ask what is your name in the middle of the night…my heart breaks no one can understand till they are in my place it's very sad and very lonely. You lose your mate, your friend, your lover, your partner, your life's companion, they don't know how to comfort you any more or help make decisions. I am playing a song Because He Lives one of my favorites because he lives I can face tomorrow Praise God. I pray for a peaceful night sleep need my rest so I can go on and face another day. God Bless…goodnight… tomorrow is another day to face with that terrible disease Alzheimer's.
 Tracy just called it is 9:15 PM wanted to know who works on our air condition and I told her… and the Bob will come out Saturday to see about doing some work on our mobile home. Having a bad storm the electrically went off I though I lost every thing but I didn't. Did some posting on  Passage will call it a night.

Friday June 25,1999

Well today is Friday and Chuck got up at 12:00 and was changed then he woke up at 3:30 AM got out of bed I put him back in and he was so confused didn't know what to do. He got up out of bed three times I told him all he had to do was close his eyes and go to sleep it was 3:30 not time to get up yet. I was going to get more sleep he said he was scared so I comfort him and told him I was there with him and we talked. I asked
him why he was scared he said because he didn't know what to do his mind was blank. I told him he has an illness that it doesn't let the message get through to the brain. Like when he use to work on the cars with spark plugs something is blocking it and the plugs won't fire. That is the way with the brain it is blocked and the message can't get through to tell him what to do. Go to sleep and when you wake up it might be different.
So he did fall asleep. Got up gave him is pills and breakfast and the girl came at 8:30 AM he is setting by me now and bugging me to lets go I don't know where he wants
to go it is 9:20 AM. I want to go get my hair done and he thinks everytime I leave he has to go with me. I can't take him all the time I need a break that is why the girl is here. Pat from VA just called and told me it is all set for the respite care in July 6 -20 I Praise God for that time will write more later. 
Went to the store Dollar Tree and Dollar General bought cleaning products then went to Wal-Mart talked to Mary, Norma, Larry, Ted, Ed, Elli; Kathy was there for a few hours left 1:00 PM talked to Mr. Thomas the manager on the way out he asks about Chuck. Then took all the clothes and things to the second hand shop dropped them off. Tracy came in with her baby Brooklin really cute and she had a little dog to give a good home to. Came home Chuck was fine Sherry the nurse from I.H.S. stopped in while I
was out called her back she wasn't in. Call social worker at VA and she said everything is set at VA for Chuck will handle the other situation when he gets back.
Going to try to take a nap after the aide leaves… 
Well didn't take a nap took Chuck for ice cream he likes that stopped at the bank in Canfiled then we came home. He did pretty good but he is confused wanted to know where did his wife go so I showed him our picture and ask him who the were. He said me and my wife I said look at me I am the same person that is in the picture he said no you aren't. So I just dropped it as he walks the halls and looks into each room looking for his wife when I am right here. I was very tired gave him something to eat got him ready for bed it was 8:30 AM. I went to bed around 9:00… it was quiet on Passage my
support group this ended our day………. Nite
Carolyn   ;-)

June 26, 1999

I slept good Chuck woke me up getting in bed because he can't get in bed right he would craw on his knees with his butt in the air and his head on the pillow. So I have to help him get in bed right. It is 3:00 AM I can't be up all night there are time he gets up without me knowing it.  So I check on the computer for e-mail and started to write in my journal for the day. Denise my daughter called last night and wanted to know if I
was coming up for the weekend. I told her I didn't call Satire House about putting him in Respite care so I won't be up. It gets quiet expensive doing that every month this month I had put out more then comes in I can't continue doing that. I did drop all the things off at the Second hand store. Will get some more stuff today trying to clean out
things in case I would Sell and move from here. Don't want to hold on to things that we don't use any more. Going back to bed it is 4:00 AM. 
Well woke up at 6:30 AM rested very well took a shower the fixed Chuck his breakfast and medicine. Waiting for the aide to come around 8:30 and she did bless her heart she is another favorite very good with Chuck. I didn't leave the house this morning because the repairman Bob is coming to check things out and give me an estamiate on the work to be done. Things went pretty good and he came around 11:00 am so we will see how
expensive it will be in a few weeks he will have the estimate done then. Charlene took Chuck out to visit a group home and it was wonderful to just stay home and rest I didn't leave the house at all.  It is 2:00 PM and they just came back Chuck said he had a good time ate lunch and visit with a bunch of old men and talked to them. Also he kept
saying what a good driver Sharlene was and that he liked going. I really believe that is what he needs to be around other men like him to talk to. Will do it again another time it felt so good for me to just stay at home while he was out. To just relax by myself it was great. Got something I wanted to get done. Praise the Lord for that. Was very sleepy so we laid down and took a nap 2:30 PM just woke up it is 5:00 PM went to check the mail and Josephine R. called wanted to know how Chuck was so we talked.
Going to take Chuck for some ice cream at Dairy Queen. Check the e-mail heard from my dear friend Laura bless her heart she is the one that puts my journal on her web site.
 I really appreciate it and maybe someday it will help someone to understand the struggles that we go through and what they go through and how they feel. You really don't have a life for your self it is a constant thing day after day. Like having a small child that is total dependent on you. 
Well came back from Dairy Queen Chuck did very well and ate good. Coming home he said I hope my wife is home. I said your wife is right here and he said no you're not her. Then He said I hope my wife is home I pulled into the garage he said she is not here her car is gone. I said she is now her car is in the garage. He comes into the house looking for his wife he doesn't know he was with her all day. How sad to be lock in your
mind and not know where you are at or know your loved one. He laid down and took a nap I went on the computer and check the email and answered my mail. Heard form Pat, Mary, Harriet, Laura, Tay, Bob, these are some of my friends that are going through what I am or have experienced being a Caregiver. They have been a lifeline of support to me pretty much on daily bases. Caregivers need people to keep in touch so
that they know the reality out there and not just caught up in the support of taking care of a loved one. It is like having a baby all over again with getting up during the night for the diaper change and getting him ready for bed or ready for the day since he doesn't know how to do anything.  Oh God I pray that you give me the strength to go on…. this road is long and hard and I feel like I am all alone. I know you are with me by my side but still Lord we need the human person to talk to and need them to
listen to us. I feel the caregiver does not have a voice and people feel this is something that we have to do and am expected to do. Like a new breed of people separated from the rest of the world how can we make them listen and understand how we feel? I don't know….. I don't have any answers. I do know that this is the close and the end of the day for me… time to go to bed and get some sleep so that I can face a new day tomorrow. Laura sent me a tape Sleeping In The Rain  very soothing music and I play it all the time and at night. Chuck loves music and does respond to it so maybe there is some connect there for him. I will close and go to bed.
Nite

Sunday June 27, 1999 

Well this the Lords day I will go to church this morning when the aide comes. Chuck woke me up it is 5:30 AM he is wet time to change him he sure knows when he is wet and doesn't like it. Got him changed and he went back to bed so I thought I would write in my journal and start the day. Tiffany is very good also have a few other good ones like to keep them coming here. I wonder what the day will hold for me………….. each day is different.  It is 6:48 going back to bed and see if I can get some more rest.
Woke up at 7:00 AM the start of a new day got cleaned up and dressed went to make chuck his breakfast fried some potatoes and eggs he loves them so we ate and are waiting for the shower girl to come that's what he calls them and me sometimes. I would like to make some things clear that being married for 46 years was not a perfect marriage we had a lot of problems that we had to work through. He has done a lot of things that are in the past and was forgiven and let go. Jesus came into my life and set me free from all the garbage and stuff we went through. Now chuck doesn't even remember anything not even me but I am here for him and will do the best I can as long as I can. It is hard for people to understand because of the way he was before but I believe it was a long process of this happing over 30 years ago and we didn't no it and he never had and CT scans or MRI done. Back then the Doctor just said it was his personality. It would be like he was two different people he would get angry, jealous, mad, and nasty all the things that would get you upset. I would leave the house many
times because I couldn't handle it. Then when I came back he would be a different person again. I wish I understood what he was going through but he was a good provider and went to work all the time. Provided what we need and we always-paid our bills on time. So six years ago when the doctor told me he might have the beginning of
Alzheimer's they didn't know for sure it MIGHT but it was a scary word for me. Like I said it was the beginning of a long journey. 
Went to church and seen some of the people I haven't seen for a long time. Don't get to church every Sunday. It looks like it is going to be another hot day really can't stand this heat Came straight home from church a lot of traffic on the road was sleepy so
took a nap and chuck had a nap and the aide didn't feel very good today so we all rested. She said chuck ate lunch and he was fine. She left and I fixed chicken for supper Chuck keeps asking where is everyone and he is looking for me again. Today again I am not his wife Oh Lord how much longer will this go on it is still very stressful for me. He wants a lot of people and we are the only one here. I pray that you heal him Lord and least let him know who I am…He want to go to bed and I try to make him wait till 8:30 PM but it is hard he keeps asking me over and over.
Denise called I always enjoy our talks Lord I just want her to be happy she deserves it.
Will be going up there for awhile when Chuck is in respite care at the Va. This was a good day but hot and things are quiet so I will close till tomorrow.
Goodnight may the angels watch over you…

Monday June 28, 1999

Good Morning another day in the Life of Alzheimer's, Went to bed early last night but had a call from a friend that I haven't heard from in a long time Carole it was so good to hear from her and get caught up on things. We really had a good talk and she is going through a lot of stuff herself like me so we were able to understand each other.
Funny how life seems to just slip by you without you even knowing it.
Chuck slept very well and is up now waiting for the shower girl we will go out for breakfast and he has a hearing appointment at 11:00 am.  That will be the start of our day… Tracy came around 8:00 am got Chuck ready we then went out for breakfast
then to the hearing doctor. Pick up his new hearing aid he said he could hear well.
Stopped at Big Lots bought a few things and on the way home stopped at the second hand store and dropped off some more things. I finish cleaning the house call VA about Chuck's doctor appointment tomorrow and check on all the rest of the appointments everything is on. Supplies arrived today had to put them all away…. Chuck ate lunch and then Tracy left, have to put the garbage out first and check the mail.  then we are going to take a nap it is 3:30 PM. I woke up at 5:00 PM Chuck said he didn't fall asleep but I did he was thinking about my mother and father and ask me where they were. I told him that they were dead he said he wanted to see them I told him he couldn't. Then he asked about his mother and had tears in his eyes I told him she had died many years ago. He was very sad but I told him I was here for him. Of course he doesn't know who I am and wanted his wife. I wanted to sleep some more but he said he had to go to the bathroom I said ok and he said aren't you going to help me I don't want to go in a
strange bathroom myself. As you can see he does not know he is in his only home. So I got up and assisted him and then went to fix him dinner. A car pulled into the driveway and it was Carol D. bless her heart she did stop by I was so happy to see her and Chuck was also but didn't remember her. Showed her the web site and Laura page and the journals she was very impressed she does not have a computer at home only at work. We had a good talk about the past and then Chuck wanted to talk so I said go ahead and he asked her if she had a car she said yes will you take me home where my wife is he ask. She said you are home he said no I live just over the hill. I asked him whose place was this he said Billy Sheon that is someone from the past. So I told him we were going to stay here tonight and I was going to stay with him. That did seem to quiet him down. I am glad that someone else is seeing what I have to live with 24 hours a day. It is very hard to cope with it. I need God's strength every day to get through. Carol left and said for me to let her know and to call and we can go to lunch anytime and I will call her and do that... it is 7:30 PM. Denise called we talked and I talked to Tom told them to call back around 8:30 PM when I have Chuck in bed. They said ok but we did talk about a car… will go and get a price on a new one and let them know what I will do with the old one. Carol said she would like to buy it so we will see it only has 33,000 miles on it. Lil called we had a good chat about all kind of stuff her family and the
work they are doing on their barn. It is so strange but the Lord is bringing people back into my life now people out of the past haven't seen in years. I wonder why? But I won't
question it……<smile> It is 9:00 PM Denise hasn't called yet and Chuck is sleeping and I will call it a night.
Big day again tomorrow…

Tuesday June 29, 1999

Well it was a long night got very little sleep and Chuck was very wet I double the diapers but they don't seem to work…I don't know what the answer is and yet he gets up every few hours to go to the bathroom and goes. I am so tired and can't keep my eyes open it is 6:40 AM will try to lay back down now that he is changed. Have to take him to the podiatry at VA this morning. The Planning on going to a picnic this afternoon will see how the day goes….Went to VA Chuck got his work done got a new schedule and talked to Pharmacy we are all set not till August. Went to the picnic it was very nice Chuck ate a lot and so did Tracy I was full also then we left about 1:00 PM seen a
lot of people form General Motors spoke to them. Stopped at UPS and mailed a package to my dear friend Laura in appreciation for all she has done for me. Then stopped at second hand store she didn't put the things out yet she said by the end of the week.
Came home Chuck was so confused about going to the bathroom and was nasty to the aide. I had to calm him down and make him set on the couch the girl left for the day. 
I checked his sugar it was 234 that was high but he did eat a lot. Couldn't stop him he was determinant and garbed a hot dog on the way out…*grin* He is resting and I am writing in the Journal and will be calling the heart doctor to make appointment for Chuck & I just called he will squeeze me in tomorrow about 9:30 am. I am glad I need to have the heart flutters checked and my ankles keep swelling up.
Called Tracy to make sure she will be hear tomorrow left message but she called me back and said she will be here.  I have let my own health go for so long can't do it any more I have to take care of me. There is no one to do it for me but myself. I want to do things differently I want to be able to rest more and think clearly I have been so busy caught up in this illness that I haven't done any thing for me. I want to cry less and laugh more then I will be able to handle him better.
I feel that life is precious and should not be wasted and I don't want to waste my time
on nothing I will go forward with the Lord  by my side…. Dean and Ellen just called we were suppose to go out for Spaghetti with some of the senior tonight at 5:00 PM but Chuck is in mood to be going out he is to confused so we will stay home. He will call the rest of the group and tell them that I won't be there either. I pray that I get some must needed sleep tonight. This disease robs you of your life, your friends, family, your mate; it is heart breaking and wears on your nerves. I pray that they find a cure for
Alzheimer's there are many people out their going through the same thing. Dear Lord touch your people touch my life make me the person you want me to be. Give me strength to go on in your name I ask this. Went to check the mail it isn't in yet will try later. Denise called and we talked about when I will be going up there I think I will try to venture out Thursday with Tracy and Chuck. Fixed Chuck something to eat and he is setting watching television and will get him ready for bed around 8:30 PM I am tired and my ankles are swollen and I will go to bed early if I can sleep. Received some e-mail from a few friends that will stick by me when I need help. Will call it another day in the life of an alzheimers patient. Sleep with the angle by your side. Nite

Wednesday June 30, 1999

Woke up at 5:30 am took a shower was getting things ready have a doctor appointment this morning. Was thinking about what he might tell me? I got up a few times but did rest well and Chuck as usual is wet. I don't understand they can put a man on the moon and they can't make a diaper to really hold…but any ways did what I had to do and changed him. Fixed breakfast was waiting for the shower girl and she came I left to go
to the doctors knew I would have a long wait and I did. It was packed I didn't get in till10: 45 he did EKG and told me after that it was stress and to take time and relax. I set there and cried because he didn't know how bad Chuck was the last time I talked to him he knew he had brain surgery. I told him he doesn't know me. He asked if he could go to the bathroom his self I told him no. He said that is a shame but he has an
uncle with the same thing Alzheimer's.  I left and called Tracy told her to meet me at Dino's for Pizza and her and Chuck did so we sat and ate very good pizza then came home. We watched a little TV and she left and Chuck took a nap and I rested. He wakes up and wants to eat again I told him not till 4:00 that was ok answer some e-mail then fixed him dinner got the mail. I did do something my self I pumped the gas for my car didn't know how to do it because Chuck did all the time. So I would by gas just where they pumped it for you. I am very proud of myself that was a big thing for me
to do…<smile>
It is only 5:00 PM and I am sleepy so I will go rest for awhile. Another thing will be to venture out on the Turnpike and try to get up to Cleveland where my daughter lives. Haven't done that yet going to try to venture up to Denise tomorrow with the aide and Chuck to see if I can get there sometime I have to do by myself. Can't depend on Chuck anymore…. 
Well we are up from our nap it is 6:30 PM my goodness I was sleeping so sound and was trying to wake up and just couldn't. But I knew I had to it was liked I was drugged I had barley open my eyes Chuck was laying by my side when he said "What is your Name" I thought my goodness here we go again. I just wished I hadn't wakened up. I believe that is some depression it was all I could do to get out of bed. I heard the lawn mower going it was the man that keeps the grass cut. People are working and Chuck wants to go back to bed. I went into the kitchen to write a check for the man and Chuck was yelling from the bedroom to come here. So I went and asked him what he wanted he said don't go down there. I said why he said there are two girls there that want to hurt me. I took his arm and said trust me there is no one there and no one is going to hurt you. With that we walked down the hall towards the living room and I showed him we were here alone. I gave him his medicine and told him to set on the couch but he is afraid. Oh Lord please take care of him and keep him quiet down I just can't
handle this all-alone any more. Show me what I am to do open the door of where he should be. If I am to keep him at home I need more help in the evenings that is the worse time. Then I need the money to pay someone to help me. He will be going on respite care I talked to Kathy at my Alzheimer's chapter and when he gets back will discuss about going on Medicaid and getting someplace closer or maybe so more help at home I am not sure what we might qualify for. But I do know you have to go to poverty level just so I have something to live on myself. Will check this all out can't go
through the winter like this. He is bugging me to go back to bed I don't want him to till at least 8:30 he feel those ladies who ever they are will hurt him. Lord there is no
one here but Chuck and I help me to understand and to help him. I also talked to Kathy about him starting to grind his teeth and move his mouth and not say any thing. She said sometime they do that and to ask if they are in pain. I will to that I just would say don't do that you will grind your teeth down  *Grin*
Finally got Chuck to bed he is so scared, and paranoid that someone is going to hurt him and he wants to go home. I told him that I was here and we are staying for the night and I will be sleeping in the same bed with him. So he is ok with that will write some e-mail and go to bed and get rested my self-another big day tomorrow want to try to go up to Cleveland will see how it works out. Nite.