Our Battle With Alzheimers Disease

INTRODUCTION

This is the story of my mama’s battle with Alzheimers Disease . It was a long, tiring, time of suffering for both her and her family, especially me, her daughter and main caregiver. I was very lucky to have a husband who supported me in this and did everything he could to help. If I couldn’t do it , he did. I did all I could do for her, until the very end. I’m sure I made a lot of mistakes, I lost my temper sometimes, I got tired and worn out with the same things, I got sick of going to Hudson but I have no regrets, because I know in my heart, I did my best. I was at her side when she died, holding her ,as the life drained out and she went to be with Jesus. I loved her so much and miss her everyday. I hope that reading this story will be of help to other people who are in their own hard battle with this awful disease called Alzheimers. If you are facing an alzheimers battle of your own, you need to know what you are facing. You need to get prepared and learn what is in your future and how to deal with it. When mama was diagnosed, we found the Alzheimer support group and learned from those who had been there before us. You need to know what coming ,cause it will hit, and hit hard and you need to be prepared and know what to do when each stage comes.
I kept a daily blog ,for over 3 years after mama fell. Along with that blog, and the notes I had kept through the years before, I wrote this story.

Mama Before The Fall

Many years ago, I had a mama who was, very active in church , had a beautiful singing voice and sang in the Second Baptist Church choir for 50 years, sang solo’s in church, taught children in Sunday school, was big in WMU, was a volunteer at Hudson Nursing home where she did sewing, and a volunteer with the Pink Ladies at the hospital. If the door was open at church, she was there. It didn’t matter for what. I never remember, when she didn’t go to church. I never remember when she wasn't singing.

Mama was a very active lady up till she was around 80 years old. Then things started to go down hill for her. We could see things that just weren’t right and knew she was having problems remembering and covering it up. She walked ,until she wore out her knees and they swelled and she used a cane. Because of the alzheimers and her age, they didn’t think they should do knee replacements. But she got around ok. Other than that ,she was in pretty good health.

One thing that mama did, was always want to GO, didn‘t matter where or when. She had been that way all her life. Every time Irv and I went anywhere, she would invite herself to go and we, being stupid, always took her. We spoiled her for years. We ALWAYS had mama in the backseat, no matter where we went in 30 years. She never thought she was imposing, and if it ever entered her mind, she didn’t care. SO, this fact will explain one reason why she did ,like she did ,when the alzheimers got worse.

The hospital director of volunteers at the hospital, had to tell mama she couldn’t work anymore ,cause she was telling people that surgery patients weren’t there, and going to sleep at the desk, making a lot of mistakes, etc. She just couldn’t do the job ,but it hurt mama’s feeling so bad ,cause they didn’t want her after 17 years of service. I understood why it hurt her so much, but I also knew she couldn‘t handle the job. The lady called me, after she talked to mama ,and I told her I understood why they couldn‘t keep her. She was showing more and more signs of alzheimers but she still fought it and kept on trying and covering up. I took her to the doctor and she was diagnosed with it at about 80 years old ,but we knew she had something wrong long time before that. She walked everyday and was very healthy otherwise. She was put on the drug, Exelon. She was still driving and just wouldn’t give it up. She had several wrecks, all were her fault. She never broke any bones but had some really neat black eyes and face to match, several times. She would just get well and go right back to driving. I loved her much ,but she was so hardheaded.

Mama was extra good at covering up. Alzheimers patients always are. If someone isn’t around them all the time, they can fool people for a long time and mama could fool them, just not me.

She had long before, stopped writing checks, she couldn’t figure out where to write what, on a check and so I bought and paid everything for her. I would go over and write out all her bills. I got my name on her checkbook and got power of attorney for her, before it got so bad. I made all her doctor appointments and took her to them all. She had to go to the heart doctor, cause she had had a heart attack and she had to go to the eye doctor and the hearing doctor and the regular doctor and it was always something. She got to where she just made a mess of everything she tried. Then she forgot how to write at all. She wanted to send Christmas cards and I bought her some and told her I would help her address them. I went back the next day and she had messed up the whole box with scribbling. I got another box and fixed them for her. I took her to mail them ,told her that I had mailed hers, and never told her that they weren’t the ones she did. She got back a lot of mail, that she had addressed to herself and put the return address, as who it was supposed to go to. I bought her groceries and bought her things she could easily fix to eat , like healthy choice‘s and sandwich stuff. It got to where ,she couldn’t fix the easy things either, and she would put metal in microwave, microwave things much too long and leave the stove burners on, and couldn‘t follow the simplest directions. I took her over a lot of meals ,but I worried all the time, she was going to burn the house down. I would have to check the refrigerator every week, cause mama couldn’t tell if food was molded or ruined, she would eat it anyway. She couldn’t see it or smell it. Both from alzheimers. It tasted ok to her.

She never would take a bath or wash her clothes. Her clothes had so many stains on them, it was pitiful. In fact, I would have to sneak out her clothes and take them to my house and wash them and sneak them back in. She wore the same thing everyday and never thought they were dirty. She used the same towel and wash rag, over and over with out washing them, course she didn‘t wash herself much. She would get real mad if you questioned her about that or anything.

Always Searching

She never knew if she was in a car or truck or what color it was. She went in the men’s bathroom at WalMart. I watched her stand and look at the signs on the door, before she went in ,and I thought surely she knew the woman picture ,BUT, before I could stop her, she went in the wrong one. I was horrified and still don’t know if there was a man in there. When she came out ,I didn’t say anything and neither did she, so I guess she never knew what she did.

She would hide stuff and forget where it was. We would go over and search everywhere and she was really good at hiding things. She would hide food, candy, keys, money, her purse, anything she thought someone might steal from her. I asked her why she hid her purse when she went to bed at night and she said cause if someone broke in , they wouldn’t steal it. I couldn’t make her understand, that would be the least of her worries, if someone broke in. I have found things in places like cookie jars, under furniture, in closet, in cabinets, in drawers. One time I found a check that we had been expecting in the mail, hidden in the closet, in the bottom of a box. It’s a wonder I found it and cashed it while it was still good but she didn’t know anything about it and swore up and down that SHE never saw that check and it never came in her mail. I also searched the house a million times for her hearing aids which she always lost somewhere. Most of the times I found them under her chair, where they fell out when she slept in the chair and were kicked under it.

One time she wanted to lend Bill(her son) some money and I went to the bank and got the cash and gave it to her , because she threw a fit about not being able to take it home and told her to be careful with it and thought surely, she could get home with it ,but I was worried. Well, she took it and walked out of my house with it and when she got home, she didn’t have a clue where that money was. She stayed up all night looking and she didn’t want to call me and tell me she had lost it. Finally the next morning, she called and told me she had lost the $800.00. She was worn out. I was sick. We went out and looked all over our yard and then went to her house and started to search, in the car, in the yard and house. We looked everywhere and then I got her purse and looked through it and there was the money, stuck way back in it, in a pocket. She had looked through it a 100 times, all night. Well, that was the last time I would let her have cash, over a few dollars . We sure knew every inch of that house cause we searched it so many times.

She couldn’t remember how to take her pills and when she couldn’t do that, we tried everything. First I sat out all the bottles on the cabinet and wrote on them when to take them, that didn’t work ,and next I would put them all in one of those cases and I would go back and she would have poured them all out, or all in together ,and said she didn’t touch it. Someone else always did it. We hit on putting them in envelopes and writing on the outside, if she should take them morning or night and the day and date and seal them up. That’s worked for a little while. She would go get the paper and find out what day it was and then get the pill envelopes and take those pills. Then, she couldn’t do that anymore either. I would find several envelopes open at once ,or none had been taken. No telling what she took. We kept a calendar on the cabinet and she used it a lot ,till she couldn’t read it anymore. It was so pitiful to watch her stand there and look and study on things and just couldn’t figure them out. She would turn the thermostat up or down and then call us and say she hadn’t touched it and she was freezing, or burning up, whatever the case was, and we would go over and the thing was turned way up or way down. She would get really mad if we said she had touched it and swear she didn’t. She had 2 laser surgeries and 2 cataract surgeries, during this time. We had to go over and put in her eye drops 4 times a day, for weeks ,with each one. One night ,she put nose drops in her eyes, thinking it was her eye drops, and we thought she had blinded herself for sure and I took her to have them checked, but it was ok. I had told her to NEVER put the drops in by herself , to always wait for me to do it, so I hid the drops. Her eyesight continued to worsen and the doctor said it was alzheimers taking her sight and there wasn't anything else to do.

Once she got lost coming from the other side of town and drove for hours before getting home. Another time she got lost just going to a party at a house she had been to 100 times and a house that was around the corner from where I used to live and she couldn’t find that house and was really late getting there, but she had to stop the mail man and ask him where the house was. She shouldn’t have been driving as long as she was allowed to. Once she was coming home and pulled in her carport, got out and went around to the passenger side to get something out. She had locked the doors and slammed the back door ,on her hand. There she was with her fingers caught in the car door and she couldn’t open the door, the car was locked, she was between the carport wall and the car, it was where people couldn’t see her and it was getting dark. She hung there and screamed till she had no voice left. By the grace of God, the next door neighbor decided to look out his back door, before he went to bed and heard this little voice and came out to look, and found her. If not for that, she would have hung there all night and who knows what would have happened to her. Dr. Brown ( her neighbor) told us, he never opened that door, before he went to bed. He called us, and as usual we ran over. He had checked her hand and said it wasn’t broken. I was surprised it didn’t break her fingers but it didn’t, just bruised them but she was so tired ,from standing there screaming for hours, that she was ready to go to bed. BUT, do you think that would stop my mama from driving? GUESS? NO WAY.

Driving ,was where we had to fight her the hardest and after several wrecks, we told her she just couldn’t drive anymore. We had also seen her trying to open the hood with the key, thinking it was the trunk, and leaving the car in gear when she got out of it, and locking her keys in the car when she got out. Once I saw her trying to find where the hole was to put the key in, to start it. She didn’t know where the wipers were, or the headlights or anything. She couldn’t see or hear good either. All her neighbors were scared when they saw her coming. They got out of the way. Irv kept her car broke down, when he could. My brother fought us on the driving thing, which made it harder to do. He believed she should be allowed to keep driving, as long as she wanted to. In fact, while we were breaking down the car, Bill was fixing it. One birthday, he gave her a car wash and oil change for her gift, at the same time we thought the car was broke down, and Irv got mad and told him he was stupid, and Bill didn’t speak to us for a long time after that. That hurt me a lot, since I only have one brother and didn‘t want to lose him. I never understood why he wouldn’t see ,but he wasn‘t around like I was and she fooled him too, I guess. I finally set my foot down. After she gave up driving, she would go out and pull the car in and out of the carport, just to think she was driving, I guess. It was hard on her to know she couldn’t do it anymore. She never got out of the driveway though ,to our surprise, but she had promised me, and somehow remembered that I told her she couldn‘t drive anymore and she didn‘t . But it scared us that she would forget and finally she told Irv to take the car away and he did that very day. The neighbors were all really happy. We knew how much giving up her car hurt her and so we continued to take her places, anywhere, because she always wanted to GO, and had ,all her life. Anytime we said, GO, she was ready. We would come and take her out to eat, I took her to church and took her shopping.

What A Trip

When it was time for Jonathan( my grandson) to be born , we took her with us ,to Kansas City ,for the birth. We had a time with her and it was at that time, that we saw how bad she could really be. At the hospital, when we went to eat, in the lunchroom, she jumped in front of everyone else in line, knocked them down to get to the food bar, and grabbed up all the spoons and after she put the food in her plate, or dropped it everywhere, threw them in the food, handles and all. She didn’t want us to help her. She really embarrassed us. We had to let her hold Jonathan ,but with one of us right under in case she dropped him. She would never have admitted to anything being wrong with her. We took her to Memphis to visit her brothers, one that was in a nursing home. It wasn’t a easy trip either. Gene was sitting in his wheelchair in this awful nursing home and mama walked in and said, “look I have to use this old walking stick now.” She didn’t just say it one time ,but over and over. I know it hurt his feelings ,cause he couldn’t get up at all. While we were in Memphis, we stayed at Tunica cause the casino’s had cheap hotels. Mama wanted to play a slot machine, so we said, what the heck. We couldn’t help but laugh, because I gave her a nickel and she put it in and it would drop right through and out the bottom, because the machine didn’t except nickels, and she thought she won. She sat for the longest time and put the same nickel in the top and watched it fall out the bottom and thought she was winning and got excited at all the nickels she was winning. We never told her any difference cause she was having fun and she needed some and she never asked where all her big money winnings were.
One time we took her to a Big mall and when we got to the escalator and stepped on it, Irv and I on each side of her, holding her arms, she freaked out and started to scream, “I’M FALLING.” We didn’t know what to do and people were looking and wondering what kind of a nut we had and it was the kind of escalator that went down half way and then you had a landing and then you had to get on again to go the rest of the way down and she got on the landing and wouldn’t move and we had to force her on, screaming and fighting us, or we would have still been on that landing .We finally got her off and she said she would never get on those moving steps again. We found out the hard way, that, things you wouldn’t expect , will scare to death, someone with alzheimers. We never took her on one again, that’s for sure. Boy, that was a experience.

One time we were eating at Taco Bell and Irv was sitting across from her and she sneezed right into Irv’s food and didn’t even know she did it and he went and threw it away and didn’t say anything and she said, Well, Why aren’t you eating? and he just said he wasn’t hungry. She just shrugged and kept eating. She never knew what she did.
Mama would call us at all times because she never knew if it was night or day or what time it was. She would call many nights and say someone rang her doorbell at midnight.
She would say she called the police to report it but we checked and they had not gotten any such call from her. We were afraid to take the phone off the hook ,so we just had to get woke up.

One time ,we went off to Memphis for a couple of days getaway and didn’t ask her to go and she called everyone we knew, in town and out of town, and told them that we had left town and stole all her money. A lot of them believed her. Lord knows what some people thought of me. When I got back to town, she was on my answering machine 100 times saying,” Patty, why would you do this to me? Why did you steal all my money?” Over and over. I told her, Mama, you KNEW I didn’t do that, why did you say it? and she said because she was mad ,that we didn’t take her with us. I still don’t know if she did that for meanness or if she couldn’t help it, cause later, she didn’t remember that she did it at all.

Every Sunday I would come and get her and take her to church and Sunday school. It got worse and worse that she couldn’t get ready and I was always late and I came earlier and earlier to get her dressed. I would lay out her clothes the day before. She would say she could be ready, but she couldn’t dress herself. No matter how hard she tried or how early she got up, she couldn’t do it. Finally it got to the place where I would get there and she would be sitting on her bed with her slip on over her dress, or a skirt and dress on together, or her bra on over her shirt, or things on backwards or things that didn’t go together and I would have to dress her. And everything in her closet would be all over the room. It was awful. I would always tell her it’s OK ,and I will help you and I did too ,till about a week before she fell and broke her hip. I found her, that Sunday morning and she had been trying all night to get dressed, and she was sitting there crying, because she couldn’t do it and she was so tired ,that she didn’t feel like going to church. She said, “I really tried.” I said, “that’s ok, we‘ll skip today” and we didn’t go that Sunday and the very next Wednesday, she fell and never got to go back to church again, ever. She was in the carport trying to pick up leaves and fell and broke her hip.

It was March 10, 2004 and I was cooking supper, the phone rang and someone said, “your mama’s fallen”. I turned off the burners and hollered for Irv and Blake, and we ran over. I felt so sorry for her. She looked at me and said, “OH, I HOPE NOTHING”S BROKE“. She couldn’t move her leg. She was so scared. All the neighbors were there with her. I thank the Lord that she had good neighbors that would check on her. We called the ambulance and they took her to the hospital. She was just a couple of weeks short of 89 years old at that time. In fact she had her 89th birthday at the hospital, didn’t remember it and never remembered one since. She never could walk again by herself, either.

The fall and the surgery, turned our life around and started us down another awful path of hospitals and nursing homes, big strokes, mini strokes, more falls and this most horrible disease called Alzheimers. It will take everything from you and after a very LONG illness and a lot of suffering, it will take your life. It took my little mama when she was 92 years old, after many years of suffering for her and her family.

The Fall

We got mama to the hospital that day and called Dr Jadic( mama’s doctor) and they found that her hip was broken and they called Dr Massonelli (surgeon)to do the surgery. We knew putting her through surgery ,would worsen the alzheimers but there was no choice, it had to be fixed. Putting the person with alzheimers to sleep ,will take what they have left. They took her to surgery and I sat and waited . Irv took Blake home cause it was so late and Bill came and sat with me, till the surgery was over. It was about midnight by then and Bill left and I stayed on with mama. Thursday came and I stayed all day too. Mama slept most of the time but when she woke, she didn’t know me or anything about what happened to her. Irv said he would stay on Thursday night, so I could get a little sleep. Friday, Terri(Bill’s wife) came and stayed and Friday night , I was back for the night again. Mama was really restless and so mixed up. She started pulling off the sheets and folding them, over and over. Mama would hold her hands up like she had a book and she would read, except there was no book. She would ask where she was and why she was there.

On Saturday, Doc( mama’s grandson) came in from Missouri to see her. He played the guitar and sang and she loved that, but didn’t remember it as soon as he was gone, but she had it for the moment. That night, Terri spent the night and mama was wild. Mama fought her and told her to leave her alone and even hit Terri on the head with a stuffed money she had. She pulled off the sheets and folded them over and over again, reached for things in the air that weren’t there and talked to people that weren’t there. I got back about 6am and mama was talking to someone, who wasn’t there. She thought the clock had water running out of it, so I took it off the wall. She would not keep on her sheets, saying she had to wash and fold them. Some company came in and mama kept on with her washing and folding, didn’t even know they were in the room. Then she looked up and asked if anyone needed this big T shirt, cause it wouldn’t fit her. She started waving her hands back and forth and I asked what she was doing and she said, reading, what else? I handed her a real book and she laid it down and went back to reading the play like one. She told me, maybe she would read mine next. Sunday night, Terri came back and she tied mama’s sheets to the end of the bed ,so she couldn’t’ pull them off. Mama talked to her mama ,who’s been dead for 50 years. They said her heart rate was high and they gave her a pint of blood.

On Monday morning and I got back at 6am again. I couldn’t help thinking, how long is this going to go on. Mama’s hands were all bloody from her pulling on the IV. I cleaned her up and she started to tell me that she had two grandsons living in Missouri, so I knew she didn’t know me, since one of those grandsons ,is my son, Michael. Dr Jadic said ,it’s a wait and see game. They are sending her to recup care ,to get her ready for rehab. I put on CMA music on the TV and she listened a little but couldn’t see the TV. Her teeth were falling out and I tried the grip stuff, but it didn’t work with her, so they were put in the cup. She had visitors and she talked to them like she knew who they were, but as soon as they left, she says, WHO was that? She seems to know us ,though. Monday night, Terri came back and I went home and to bed.

Tuesday morning I’m back and the first thing mama said to me was” Patty, take me out of here”. Mama had taken all the monitors off and no one had noticed. I called and had them put back on. Mama was back to her folding AGAIN. They moved her to recup care today on the 3rd floor ,about noon. It was a big nice room and I was glad of that. A friend from church named Lillian came by and mama thought she was her aunt Lillian from her childhood. Mama never rests, just a few minutes at a time. It was a hard day for me. Terri had a rough night , that night too. Mama called the black nurse , the N word and told her ,she sure was black. I guess they are used to it. She never slept and was mean and told them they BETTER call her daughter. Mama’s brother Walter called and mama told him she was fine, sitting in her swing ,watching the people go by. Terri thought he would get the message, since he called her at the hospital and she couldn’t have been sitting in the swing ,but he didn’t seem to notice. Just told her that he was glad she was fine. He’s 15 mths younger than her.

One Week Into Hell

Well, it’s been one whole, long week and it seems like forever, as I came back. Mama said” well, it’s been a boring day, I haven’t had any visitors”. I said” mama, it’s morning now and everyone has been home sleeping“. She started doing her folding and it was hard to keep her bottom covered up. She couldn’t wear panties because of the cath tube. It really does no good to try to explain anything. She asked me if we were at Sears and I said, ok, and she said she was at Sears looking for a refrigerator and that’s where she fell. The aid came in to change her bed and mama said she had lost her rings. The aid jumped back and said” I don’t know nothing bout no rings”. It was funny ,because she didn’t want to get accused of taking something, and I told her mama had no rings, and then she went ahead and changed her.

Then mama thought she had broke her hip again and that someone she knows on Lauri St ,had broke theirs too. That’s a street that she lived on 40 years ago. She told me the person in the other bed, kept her company. That would have been great, except there is no other bed. Then she asked me when I was seeing my doctor and I said “I’m not” and she said,” oh, then your just waiting on me and I said, yes, I’m with you.” That night, with Terri, she worked on a bookshelf that had 300 books on it and she was awful tired of books by then.

Here I am back on this rainy Thursday morning. Terri had to have mouth surgery and Bill was sick with a cold and fever, SO ,guess who that left, night and day. Mama asked me if that person over there had their breakfast and I told her ,yes. Then she said she didn’t know they had places like this and I told her this was the same place and she said, it was the little place on the corner. I haven’t a clue what that is. Then she said, “I think I’ll go to sleep, do you want to put me back to bed?” I said, “mama, you are in bed.” and she says, “I am?” Then she said” I don’t like this drug store hospital. I just don’t know ,if it’s going to get any better or get worse.

A friend came and sat, while Irv and I went to the Alzheimers support group. All we talked about was mama and everyone there said,” Don’t EVER take her home.” Take her directly to the nursing home, and tell her she’s in rehab. The doctor came in and said” Never take her home, not to your house or hers ,cause you will end up killing yourselves and mess up the rest of your life”. It’s so hard to know what’s right ,but I know, I can’t do what she needs. When we got back from the meeting, Lillian thought mama had done real good ( talk about fooling someone)and she walked out the door and mama looked at me and asked if the church let just anyone use this place and all their stuff. She talk to God and asked him to let her go home and sit in her swing. Then another friend came in and asked mama what she had been doing and she said, “well, I went for a walk and went to First Baptist Church for lunch, then exercised and since then I’ve been sitting here in the swing, watching the people go by.

She keeps talking about wetting the bed and I can’t make her understand it’s going in the bag. I looked away and she had folded the sheet and lay there naked. Then she said” who’s going to take me home?” and I told her she wasn’t going home and she said,” you mean I have to stay here more?” She asked if the church charged us to use this place and I said ,“no“.

It was night again and I was still there. I was so tired ,but she kept trying to get up, thinks she’s in a chair, asks if she had to go up front to go to bed, keeps saying she’s wetting the bed. We sat and worked on telling time and she didn’t get it right once. Bill called and while I was talking, I smelled something awful. I asked her if she pooped and she said ,“NO“. I lifted the covers and it was everywhere and she didn’t even know it. They came in an cleaned her up, like a baby . It hurt to watch that. What a night. She looked at TV and thought it was a man looking in the window at her. Then she thought there was a bug on her. The nurse and I both told her there was no bug and then when the nurse tried to take her temp , she sucked on it like a straw and said she couldn’t get anything out. I’ve never seen her have hallucinations this bad. All this and it was only 10pm. How the heck, was I going to make all night?

About 1am she started fighting to get up. I asked what was wrong and mama heard a baby crying and she had to go take care of it. After fighting this awhile, she told me she had found the baby and fed it and it was asleep beside her and I told her that’s good. This went on all the rest of the night, with kids, babies, and I got to go make coffee. She never slept at all. At 3:45 , I called the nurse, cause I could take it anymore. Nothing they did helped. The nurse stayed with me and talked to me. I thought that night would never end.

Dr Pernique came in and told me that I would have to make a decision in another couple of weeks ,cause Medicare will only pay for 100 days. He and I sat a few feet away from mama’s bed and she never knew we were there. He said he was increasing her meds because of last night. He also told me, “Never take her home, She will kill you, Ruin your family life and you can’t give her the care she will need, 24/7. “

Melissa came and stayed about 3 hours ,so I could get out a little. I needed out. We took Blake to lunch and swimming. When I got back, mama said she didn’t feel good and she looks so old and pitiful. They came to walk her but couldn’t wake her and I knew it was going to be another all nighter. I woke her for supper and she said” there’s not many people eating up here this morning”, what time is it? “I said it’s 6:30 and she thought that everyone that ate there must have had to go to work early. I said,” Mama, when was the last time you had fish for breakfast” and she just shrugged. She didn’t have a clue what I was saying. She went back to folding clothes after she ate. I was so tired and Irv’s headache was bad and I called Bill and he said he and Terri were both still sick and couldn’t come help me. I agonized over leaving her alone but I knew I couldn’t do this for the rest of my life or it was going to be a short life. I talked to the nurse and they promised they would call if anything came up and they would watch her. I cried as I left and watched her trying so hard to figure out where the nurse button was, that I had showed her a thousand times and she just couldn’t figure it out. I came home and cried myself to sleep. It was so hard.

I woke that morning at 3am and couldn’t sleep ,so I went back to the hospital. I stopped at the desk and they said they had to get her a sleeping pill. When I got to the room, she was wide awake and said” I was scared and didn’t have anyone to take care of me”. She told me she couldn’t get a drink, no one would come, no one talked to her and she was shut up in here and couldn’t get out. She just kept saying how scared she was. Then she told me someone had rung her doorbell at midnight and she couldn’t answer it. I guess that proved no one rung it at home either. I got her settled down and with me there, she went to sleep. The nurse came and told me I should be home sleeping and I told her I worried and she said, that mama either hollered or pushed the button every few minutes, so they couldn’t ignore her. I decided I wasn’t staying nights anymore and I had to have some time in the days too. I couldn’t do it all by myself. Mama wants 24/7 attention, she’s spoiled rotten. But I can’t do it anymore or I will be dead. One thing, I decided is that she doesn’t remember it anyway. They came in to walk her and she told them she never remembered having walked before(It’s a miracle). When they walked her it was with a walker, and a person on each side, holding her. I went off and ate lunch with Irv and when I got back , mama said she had eaten with some old man and woman and some others. I just said” O K”. Then we had more cover pulling and taking off the gown, fun. After supper, I got her fixed, had a long lesson about the button and told her I had to go home. She told me not to stay long because she had to have me take care of her. I assured her the nurses were there but it did no good. Night time is the worst.

Trying to Escape

Irv got up and went for me this morning ,so I could go to church and Sunday school. Mama told him that no one would come open something for her. Irv asked her what she wanted open and she said she didn’t know and she didn‘t have anything that needed opening. After church I went up and fed her lunch. We fixed the rails on the bed and left to go get us some lunch. I walked back in and she was sitting at the foot of the bed ,with her feet sticking out between the footboard and the rails, doing her best to get out of that bed. I hollered,” What are you doing?” and she said”, trying to get out of here”. I said,” Mama you can’t get up by yourself and she says, Why not?” I said because you can’t walk and she said, “why, I’ve always walked“. I called the nurse and they got her out of the crack and into a chair. I knew if I had been 5 minutes later, she would have been on the floor and have something else broken. The doctor told me this morning, that she will never again be where she doesn’t have to have 24/7 care and even if we see some improvement , it will just be better and then worse, but will keep going down. He thinks she needs a nursing home, and suggested Hudson ,as the best one. I’m just sick. I can’t stand the thought, and tomorrow, we had to start checking on things because the time’s up and I have no other choice.

I had never before felt like I did on Friday night. I was so tired and I knew I couldn’t do this night and day forever. I have to save myself and I have to do what’s best for us all, not just mama, whatever that is. I fed her supper that night and Bill and Irv came up for a few minutes. I stayed till after shift change, late that night. Mama said, “Who’s sleeping on the couch tonight”? I told her no one, and she started with her complaining. She kept on , how scared she was and I hurt so bad and needed to go and I finally did. Bill said he couldn’t come and then he called back and said he would come. When he got there, they had her at the nurses station again, sitting in a chair where they could watch her, because she kept trying to get out. He told them he would stay and I could hear them on the phone trying to get medicine down her and her refusing. She’s so hardheaded. I know these nurses are counting the days when they get rid of her.

When I came back the next morning, at 6am, Bill had already left. Mama started in about the scared stuff and claimed she didn’t even see Bill. We went to check on some stuff and we found out, we couldn’t afford to keep her in her home and hire a sitter full time too. Mama had hardly any money, only her home and S.S. We got back and mama told us that she wishes they wouldn’t move her into that other building at night. I tried again to tell her they didn’t. But it was Hopeless. She wanted to know why she had no get well cards and I showed her all her cards and she said, “OH, well, I’ll have to look at them sometime.” I can’t count the times she’s looked at them. I asked her what she thought about getting a sitter to stay with her and she says, “not unless it‘s someone I know, like you“. I tried to explain what it was doing to my health and she said” I’m, sorry BUT, I want you to stay with me.” She doesn’t care how I feel, as long as she gets it how she wants it. I left her hollering at about 6 :30 and went home. At 9:30 the phone rang and someone had dialed my number for her and she was having a fit, that it had been so long since she had heard from me. She said Nan had tried to call me on all our numbers and couldn’t find us and she was just worried to death. I hung up and called Nan ,and Nan said she had visited with mama ,and mama was fine when she left( she can fool them all) and I guess mama flipped and made up all this stuff in her head, after Nan left. I called the hospital and asked them to please not let anyone call my number for her again tonight. They said, she would scream at people going down the hall for help and probably one dialed it for her.

I got back up there early the next morning and they told me they didn’t know who called my number for her, but she stayed messed up and they had to sit her back at the nurses station for 2 hours last night . Mama told me that they took her someplace, she was cold, she didn’t have any shoes and was treated like a criminal and they wouldn’t let her use the phone, to call me. They came and took out her stitches and she was healing fine in her hip, but just had no mind. She told me, that last night, Melissa was walking up there and all her insides fell out in the floor. WHO Knows, where that stuff comes from? Melissa wasn’t even there.

Mama was so messed up. They came in to walk her and she got to the end of the hall and had to sit down, because she was so tired and then she just started crying. I couldn’t stand it and broke down with her and we both sat there at the end of the hall and cried together. It broke my heart the shape she was in and I knew, somewhere inside her, she knew how bad off she was.

Decision Time