|Sharing my story with my Mother and Alzheimer's Disease. (AD)|
|My Mother, Clarice, was diagnosed with Mid Stage Alzheimers'
Disease (AD) early August of 2000. Even though my sisters and
I suspected her of having AD for 5 years prior to an actual diagnosis,
doctors told us that it was more likely, that she has had AD for the
past 10 years.
My Mother is 66 years old, and she was one of the most independent,
strong-willed, and active women I have ever known. She is no longer
the same woman! She denies anything being wrong with her and does
not understand any of this. My Mother and Father divorced when I was
9 years old or so, and my Mother has lived on her own since.
I'm telling my story because it helps to share. It helps others to read about a similar situation. It helps to know that you are not alone! So share my story and God Bless all those who have a loved one with AD and the victims themselves.
| I guess I should begin when we first noticed a problem. We meaning my 3 sisters and myself. I have an older brother also, but he lives in Florida and really isn't any help. He is too distant to really understand all of this also. Unless you live it, breath it, and be with someone on a regular basis, you really have no idea of how it really is. People seem to pretend to care and understand, but you know they just don't get it. They can't! I'ts not their fault, they just don't get it because they don't have to live it and really know the disease. I never would of had a real clue at all if it weren't for my Mother.
We suspected the disease about 5 years ago because my mother was increasingly repeating her sentences all the time. It was quite annoying but we dared not say anything to our Mother because she would get irrate if you ever mentioned her ever having a problem with anything.
It was my twin and I who first came to the conclusion that it was probably AD. But after a year of this repetition phase, my other sisters soon suspected AD as the cause also. We didn't talk about it much though. It seemed like the best thing to do at the time was to ignore it. I believe my sisters (not my twin but the other two) perhaps hoped the disease would just go away. Pam and I knew better and tried and tried over the next year and more to convince my sisters that something needed to be done. They did not want to deal with it though.
The disease just kept getting worse and worse. She missed appointments all the time, and would come over unexpected thinking there was a dinner planned for the night that she was invited to. Things like that started to really worry me.
Then the disease made her money skills go down hill fast. My mother was a bookkeeper for years...She knew how to manage money! But now she was starting to bounce checks, and try to pay her Medical Insurance through her Car Insurance agent, things like that.
Soon, her clothes were no longer the things she would normally wear at certain times. Her Sunday best Church clothes seem to be her every day attire now. And some times she would wear something that had a whole in it or dirt/rust mark on it. This was not my mother either!
About every 3 months or less we would notice a new symptom. My Mother soon lost her sense of morals. She would do things and say things normally not said. She seem to lose right from wrong. I remember once, when meeting my Mother at my sisters work place. Within the entryway to her building, is a very high cieling which echoes if spoken in. When my sister walked over to us in this area, my mother with her loudest voice ever said this to my sister..."Are you gaining weight? You look fatter!" Oh my Gosh did we cringe with embarrassment. This was just the start of this phase. This was not my Mother!
My mother soon became very paranoid! If my sisters and I even suggested that she see a doctor about anything, "We were all out for her money", or she believed we wanted her house. I remember very vividly of a day I once visited my Mother at her house. I walked into the entry and noticed a new vase she had on her entry table. I said, "oh Mom, how beautiful, is it new?" I'll never forget the look on her face. With a stern glare in her eyes and a mean tone in her voice, she replied with this. "Yes it is! And no you CAN"T have it, I'm not dead and burried YET!!!"
Oh my Gosh! I just quickly changed the subject. There was a lot of this going on lately. We learned to drop things much more quickly and change the subject all the time now.
My Mother was never a very open person and easy to communicate with, but it was impossible to even say anything to her during this phase of constant paranoid behavior. We later found out that Paranoid Behavior is a very common stage in AD. It all hurt so much! I never asked for anything from my Mother. All I ever wanted was her love. But my mother and I have never had a real good relationship. My Mother always let it be known to everyone that my twin and I were so much to handle and we gave her much grief during our teen-age years. My Mother had her favorites, her pride and joys she would rant and rave to everyone about. Pam and I were something just to chuckle about. But we also became the most compassionate ones, always in search of her love that we never really felt.
My Mother was never a very affectionate person and never really knew how to empathize with anyone. It was hard to love her during this paranoid phase which lasted at least 2 years prior to putting her in a Nursing Home. The guilt, the anger, the confussion and feeling of helplessness was so hard to bare. So much hurt, I have pushed it too deep within to even recall now.
|A trip in Nov.- 1998|
| This is a hard one for me to talk about. So many hurtful things happened on this trip.
My Mom, my sisters and I were given airline tickets to come for my Brother's 2nd wedding in Florida. I don't dislike people easily but this new sister-in-law....Uugh! Right under my skin she crawled and scratched like a bad hive.
This was really the first long look into just how bad our Mother was getting.
I'll never forget us all at the beach and finding Mom had disappeared on us as we played in the ocean. Two of us stayed on the beach, and two of us went looking for her. My Mother was found at the front desk of the Hotel. She was telling the employees that her car was stolen.and needed to get to her son's house and she was giving them his old address and not the current one. (Keep in mind, we flew there and borrowed my brother's car for the day.) We said...Geeez Mom, were you just planning on leaving us here without a car even if you could leave? We knew at this point, we had to keep a watch on her more carefully. Geeez...here she is our Mom and we are having to watch her like a 2 year old.
Then there was the reception. Mom had a couple of drinks and my older sister wanted my twin and I to take her back to my Brother's house so she could go to sleep. We told my sister that we had no intention of calling it a night though because it was only 10pm..She said that's fine, just make sure she's alseep before you leave. The bride's son, age 24? or so, drove us all back to my brother's house. Mom went to bed, and we thought she was asleep so we proceeded to leave. I swear she thought Pam and I were 16 years old again, trying to sneak out of her house because the spectacle that she made of herself was the only explanation for it. She literally tried to keep us from going and we tried to explain, but she didn't understand in her mind. It became a yelling match until we finally said in a stern voice, LOOK MOTHER, WE ARE 33 YEARS OLD, AND WE WILL LEAVE IF WE WISH, SO GO TO BED!!! She looked so puzzled and we were so confussed at the time about what really just happened. It was like being taken back in time, a time I didn't care to remember let alone relive! It was the oddest thing.
This was a glimpse into the future for what this disease can do. We were scarred and very confussed. We had no idea how to handle any of it.
|A trip in July- 1999
|My Mother had a hard life growing up, but her roots and love belonged to the Sandhills of Nebraska. Nebraska was always a retreat for family get-aways when I was young. All that remains of my Mother's Family and History are there. During 1999 my Mother was totally obsessed with Nebraska. Obsession was another common trait among AD victims we later learned. In July, my older sister and I decided we could take time off and go with Mom to visit Nebraska once again. My daughter Lindsey, 10 years old at the time, went with us. I figured Lindsey would be a good distraction of love with Grandma when needed.
At this stage of AD, my Mother could no longer retain anything for longer than 1-2 minutes or less and talking to her became such a chore. It was frustrating to say the least. When I was with my Mom at this point in the disease, it was like being in some insane world that made no sense to me. I hated the game of repeating myself. I didn't understand how could she be hungry when we just ate. Or introducing us to our Uncle as if we just met. Or keeping an eye on her like a child was no treat!
While staying in the Hotel in Nebraska, we noticed such odd behavior from our Mother. While preparing to go to bed for the night, my sister and I sat on the bed and just watched our Mother do repetitious unusual acts. First to the cooler she brought, out came the bananas and into a bag with other munchies she brought. Then she would hang her clothes up, to only take them back off and put back in her bag. Then she messed with some things in the bathroom (we couldn't see) only to come back out and repeat these steps over and over and over. We had never seen such bazzaar behavior in our whole life.
After going to sleep for the night my Mother woke many times to do odd things. Once she woke up my daughter just to ask her the time. Once she went to the windows to look out and fiddle with the curtains. Once to check on those damn bananas. Grrrrr Each time we would yell....MOM...GO BACK TO BED!!!
My Mother was at her worse on this trip! We soon learned, what we already suspected, was that taking an AD person out of thier normal environment, at this stage in the game, makes their condition much worse! But we were 10 hours away from home and in this for the duration. We learned that she was much worse than what we had thought.
We noticed new symptoms on this trip. Like taking things that don't belong to her and putting them in her purse. She would take my daughters glasses, my sister's camera, my Uncle's keys, things like that. And she would do things like take her keys out and try to get into my sister's locked car with them, thinking that car was hers. Trying to explain, no mom, this is Jennifer's car would never help. It made her mad and confussed and she would say, well...where is my car then? She didn't seem to understand we were even in Nebraska. She became more and more confussed on the trip and her behavior more and more childish. I recall her throuwing a bag of nuts at my sister, and hitting me on the arm for whispering something to my daughter. It seems the more you to try and explain reality to an AD person the worse it is at the time for them. They do not live in the real world. Arguing doesn't help!
When it was finally time to leave and head back for home, it was all we could do to keep our calm about our situation we were in. Mom wanted to be home immediately. She did not understand we had just been in Nebraska for 3 days. The drive home was pure HELL.
Our Mother accused us of everything from trying to take her away from home to be put in a NH to driving around along enough for our other sisters to go to her house and steal everything she owns. During the drive if we even mentioned Nebraska and the trip, she became irrate at us becaues in her mind, no such trip even existed. We were about 2 hours from home when I finally blew and could not take the abuse any longer. I turned around, as if she was a child, and yelled at the top of my lungs..."YOU HAVE ALZHIEMERS' DISEASE, YOU DON'T UNDERSTAND, SO I WANT YOU TO SHUT YOUR MOUTH AND NOT SAY ANYTHING ELSE UNTIL WE GET YOUR BUTT HOME...NOT A WORD!!!"
Oh my gosh...I had never spoken to my Mother like that before but it just flew out of my mouth. I felt so guilty but we were so tired and exhausted from dealing with her on this trip and the drive was so long...I couldn't take it any longer. It must have worked because she shut up for at least an hour and then slowly started in again, the last hour again, until we got her home. When we did get her home, she acted happy and thanked us for taking her shopping. Here we took off work to make sure she got to see Nebraska again, lived through HELL...and she thinks we just got back from shopping.
My sister and I knew this was to be our last trip with our Mother to Nebraska or anywhere for that matter. We also knew that her illness was going down hill fast and we had to try and get her some help. But how? How with a woman as independent and stubborn as she? How do you get someone some help who does not think they need help?
| Trying to talk to our Mother about memory problems was impossible and soon we gave up that subject with her again. The anger in Mom and the frustration with our concerns for her was put on a back burner until we could think of something else.
We played the game as best as possible and dealt with the punches of AD in Mom. We learned many things during this time. Like how it is easier to go with the flow that to confront it and do anything about a certain situation. And if repeating yourself continuously is the way it must be, then do so with grace instead of distaste. We learned to take advantage of some things with the disease itself, like if you want her to do something tell her..."You told me that you wanted me to go with you to the bank." instead of saying "why don't we go to the bank to clear things up". We learned how not to upset her within this disease. And in a way it helped us because the fight seemed easier to accept.
My younger sister's Mother-in-law died in Dec. and her Father-in-law was grief stricken. He became depressed and started seeing a Physciatrist. His name is Gerald. I'm telling this, because he plays an important part in the anger of dealing with Mom and Alzhiemers' later.
"Some good laughs"
|It's sometimes easier to find the nonsense in AD than any sense of it at all. And to make fun of it at times seemed to be a way of releasing a lot of tension about it. Some things Mom did where just too funny though. Like the time she came to my house and she had purple eyebrows. Not bright purple or anything, and it took me a minute to figure what was wrong with her face, but it was definetly the eyebrow color. Or how about the time she came over to give my daughter and son a birthday card that day with money in it. (it wasn't either of thier birthdays let alone the fact they do not share the same day for a birthday) One day my Mother came over for dinner and was early as usual. She could no longer cook for herself any more so I told her not to bring anything. She brought with her some Wieght Watcher cookies and a bottle of honey. I said..."Mom, what's the honey for?" She said I thought you might want to put the "Honey Bear" ontop of the cookies.. Giggle.
One day my Mother came over and I could not believe my eyes. My mother, who had just turned 66 years old, was jumping on my trampoline with my kids. I had never seen my mother do anything like this before. It was just not her! But funny none the less. I was so scared she would brake her leg or something though, but the look of delight on her face and girlish giggles made me shut my mouth and say nothing. I knew then, that she was regressing within her mind and becoming the child once again. I had no idea if it would last or go away. I started reading everything I could on AD.
In April, my Mother and her new friend Gerald, started seeing eachother, and it was good for my Mother. They really enjoyed each others company and he kept her quite busy so we were all relieved somewhat. The pressure of having to keep an eye on her was off some.
|Boy did I learn a lot during this time. I read everything I could on the subject. I found out that most AD people live an average of 8-10 years with the disease. Some articles varied a great deal though. I found my Mother had all the symptoms. I found out all the stages and what to expect. I WAS SCARED! I WAS SO ANGRY! I felt guilty, I felt helpless, I felt alone, I felt so many emotions I had to stop reading. I begged my older sister to seek help for Mom now. After weeks of me nagging her, she finally agreed we should do something. Moms driving was worse too. She did no cooking any longer, her clothes were beginning to look really messed up. Like rust spots on them, holes, and dirt sometimes. Mom was no longer coloring her hair either. The grey was finally revealing our Mothers real age and it only made the disease seem worse for us.
My Mother started seeing Gerald on a daily basis. .(My younger sister's Father-in-Law) They were getting very close. Almost to the point of inseperable. They did everything together. He started cooking nightly for her. Taking her everywhere with him and anywhere my Mother needed to go, he was right by herside. This man starting kissing my Mother in front of us children. It is right then, I had a serious problem with this relationship. MY Mother has never kissed anyone in front of us children EVER! It was simply not my MOTHER! It was clear that this man did not understand her condition even after us warning him. In my eyes, this man was totally taking advantage of a woman who was no longer in her right mind. I tried convincing my older and younger sister of this but they thought Mom had the choice to do what she pleased.
We discovered that our Mother was no longer taking her medications for high blood pressure so we took advantage of this situation and convinced Mom to see her doctor for a refill. My older sister then talked her Doctor into looking into her memory problem because we believed it to be AD. He agreed! My older sister took her to the appointment and it did not go well. Mom got furious with the doctor at the meer mention of a problem and she stormed out of the office.
We then took advantage of a mamogram appointment she needed. We tried again with the doctor. The doctor was able to get Mom to answer a few questions but once again, Mom stormed out. Mom did not know the date, the season, or tell the doctor her correct age. It was enough that the doctor wanted Mom to schedule a complete Neurological Exam. My older sister, Jennifer, made the appointment but how would we get her to it? How do we trick her into this one? We knew it would not happen because there is no way Mom would cooperate with an all day exam. Mom didn't think there was anything wrong with her. It was all of us who had the problem she would say.
"The Start of it all"
|My Mother was still obsessed with going back to Nebraska. In her mind it had been years and years that she had been back. She constantly asked us if we would go with her. She even assumed in her mind that we were going, because she even showed up at my sister Jennifer's house with bags packed, ready to go at 6:00am. on more than one occassion.
At the beginning of July though, Gerald had talked to my younger sister (his daughter-in-law) about taking our Mom to Nebraska because she kept asking him to. My sister advised him against this strongly! He did not understand the severity of my Mothers illness.
Very early one morning, we got "THE CALL" A call that would change our life forever! A call that would "start it all".
Gerald began to tell a story. He had taken our Mother to Nebraska, against our wishes and concerns. In the middle of the night, my Mother awoke to a see Gerald in bed with her. She did not recognize him. She called the lobby and demanded that security get this stranger out of her room. He told us that things were beginning to get heated up and they had tried to be intimate that night with eachother. (this man is 78 years old, and my Mom is 66) but she got upset over this and he thought maybe this is what really upset her. Gerald went on to say, he went ahead and got a different room at the Hotel and awoke to find that in the middle of the night, 3:00am. the front desk clerk stated, Mom had checked out of the Hotel. A witness to Mom leaving said that she had asked them how to get back on the Highway and head for Illinois. They were even nice enough to get in their car and actually direct her onto the highway. They remembered it was hard to shake her off thier tale and it looked like Mom did not understand they were waving her onto the ramp exit but Mom finally did.
I can't tell you how angry we were about the situation. Gerald drove the 10 hours back home and still no Mom. Not a word! We had no idea where she was and how she would get back home on her own. We called the police and had an APB put out for her and we filled out a missing persons report also. Late that night, after 16 hours my Mom dissappeared, we got a call from the Iowa Police Dept. saying they had our Mom and would detain her until we arrived. The police told us that Mom was not seeming to be lost herself, but was saying that she had to small children missing and one was in the 2nd grade and the other in 3rd grade. (all her children were over the age of 34 at the time) We arrived in Iowa 5 hours later to find Mom. Mom thought she had a job there and was just wantng to go home because she was tired. The whole trip back was a real ordeal. She was anything but quiet, and she was making no sense at all. Her sentences were very messed up and she was even making up words too.
The day after we got back, I called the Iowa Police and explained our situation. I asked for a detailed report, about the inncident with my Mother, to be faxed to me as soon as possible.
My brother came up from Florida within days. It was my job to find 3 attorneys who specialize in taking Guardianship. I actually found that they should specialize in what is called "ELDER LAW". We visited the lawyers and found the perfect match. The attorney we chose, had a mother die from AD, and he started the AD association in our area. All we wanted was to get our Mother off the road. And in order to do that, we had to go after Property Guardianship. (Thats guardianship of her assets, her house, her car. NOT herself as a person) We feared that if we took all her rights away she would decline so rapidly. We just wanted that car away from her so she could never get lost like that again.
Soon after the first attorney meeting, my brother went back to Florida.
In the meantime, my Mother began drinking way more than she use to. Her male friend, Gerald, would buy them wine all the time. He would also make her things like Manhattens and Long Island Iced Teas. DANG....those drinks have a lot of alcohol in them and he would allow her to drive after these drinks. This man is NOT well!
Then one day, we had gone out to my Mothers house and she had this horrible burn on her neck. It covered the entire front part of the neck and down into some of her chest. It was beet red and leathery to the touch. No blisters and yet it looked to be flaky with dried skin. What in the world did Mother do to herself? I don't think we will ever know for sure but we do have a clue. We think it started as a rash because Gerald said she had one days before the burn, and when we asked Mom what she was putting on it, she went to the bathroom and starting quickly applying things like, soap, then shampoo; and we said "STOP!" and washed it off of her. We got her some medicine and we all took turns, daily, to see to it that she took the medicine. But the fights with her were horrible. She would throw the medicine and try to kick us out of the house. She would not listen to reason. Her neck and throat were very swollen and we tried everything to get her to take the medicine. Somtimes we had some luck. I guess it was enough because the infection and swelling were slowly going away. Within days, Mom became very upset and started threatening us with things like..."WHAT DO YOU WANT ME TO DO...KILL MYSELF?" I don't know why this started but every day it was more of the same. I suppose she knew something was seriously wrong within her mind, she just didn't know how else to say it.
After talking to our Attorney, it was highly recommended that we go for Legal Guardianship instead of Property Guardianship now. Mom was starting to become a danger to herself.
We had no choice for her sake. The unthinkable of taking all her rights away was in the making. ALL the emotions came in a flood.
"A Month of Hell"
|Things worked quickly and by the 5th of August my Mother was served with a summons that granted us Temporary Guardianship of her. We were instructed that it be best to meet the sherrifs at my Mothers house while the summons was being served so we could help explain it to Mom. Mom was so upset. Unlike anything I have ever seen before. She did not understand it either though. As it was read to her, she just kept saying, "I don't need anyones help, I have lived on my own all my life". While we were talking to Mom and trying to calm her down, it was my twin's job to take My Mothers Car away from her while the police were still there, in case that got ugly. We distracted Mom while the car was being driven out of the garage but she suspected something. She kept inching her way to the garage. By the time Mom got to the garage and went out into it, the car was gone and she saw no one taking it. She was very confussed about why her car was gone. The police told her, "Mame, your car has been legally taken away because your children are very concerned for you." Mom did not understand. ALL she wanted was her car back. That was her only concern. She didn't understand the whole picture, just that car. Her car was her whole life! Her independence, her love, her get-away, her sane world of having to always leave and be somewhere. She was always on the go with that car. Taking her car away from her was the worse thing we could do to her, and yet we had to do what was right.
Everything went down hill from there. She was constantly, day to day, making calls and bothering everyone about where her car was. Or Mom would insist that her car was being worked on and needed to go and get it now. My sisters and I had devised a plan of each of us going out to Mom's house daily to check on her, see to it she had everything she needed and run her around to do errands. That was the plan. We were going to watch her, take care of her, and see to it that she remained in her home for as long as she possibly could. But things got so ugly. The hurt, the pain, the frustration, it was all so much. And 3 out of us have small children of our own to take care of. We were still determined but Mom was getting worse about saying things like " WHAT DO YOU WANT ME TO DO....STICK A KNIFE IN MY HEART?" "SHOULD I JUST KILL MYSELF NOW?" WHAT DO YOU WANT ME TO DO?"
We got so worried for her, that we all decided we should take her to see a Physciatrist. We had to come up with a plan that would get her there. We knew we could use her inability to understand things to our benefit. We would tell her we were coming over to take her shopping and then out to eat. We made the appointment and they wanted to see her immediately. Only my little sister and I could take the time off to do this with Mom so it was just the two of us, with our other sister's best wishes about what would happen once we were there. We were so scared of how mom would react with the Physciatrist. Our Mother doesn't talk to anyone about her feelings, and admits to nothing!
Within a couple days, we went to Moms to pick her up to go "shopping." I had made a tape of her favorite music to relax her in the car. It worked too well, for in the back seat sat my Mother, clapping her hands, and singing to Neal Diamond like a young girl on her way to Church camp. Yet it was no camp we were headed to and I felt horrible!
We told Mom that we needed to stop at the "BANK" before we go shopping. Mother took daily trips to the bank for one reason or another this past year, so we thought that would work to get her into the building. Once inside the building though, Mom believed it was now a Doctors Office, so we went with that idea now. Mom asked who had the appointment. My little sister, Kathy, said "I do Mother, it won't take long, do you mind?" Mom and I waited in the reception area while the staff all talked to Kathy. I had no idea what was going on, but keeping Mom busy and happy was an extremely hard thing to do lately. These last 3-4 months, she has been unable to stay in one place for no longer than 5 minutes.
When my sister finally appeared she motioned me over to her. She told me that they explained to her that if Mom is indeed the way we discribed on the phone, than an ambulance will most likely be called to have her admitted to the hospital for an evaluation. But they did want to see for themselves and try and talk with Mom about the situation.
Now, Mom would never have gone back to the room willingly if she had known that this was about her so Kathy went up to her and said calmly. "Mom, they think there is a serious problem with me and they want to talk to you about it. It's serious Mom!, so Please come with me." Mom went back willingly and sat down for what she thought was a consultation with Kathy's doctor. When the Doctor told Mom what sort of Doctor she was and why Mom was there, lets just say shit hit the fan. Mom became as restless as a wild beast trying to escape out of it's cage. And I don't blame her, but she needed so much help that we could not give her. It was so sad to see her confronted and cornered like this, it broke my heart for her. We begged Mom..."PLease just talk to the doctor Mom, we love you and just want to help you, PLEASE !" But she dug herself in so deep, they had no choice to call an ambulance for her. It was the worse thing I have ever had to witness my whole life and I really don't care to discuss this part of it any further. It still hurts too much.
By the time we got to the Hospital, they had Mom calmed down, and Mom didn't understand why she was even there. In her mind, the visit to the doctor just minutes ago did not even happen. Mom just wanted to go home and no one would let her. She seems so scared and alone. It was so sad! Mom was admitted and we were all devastated. We knew the outcome of all the tests would not be good and it would no longer be totally in our hands now. In a way it was all a relief also though. Our little secret was out for all the world to see. And we were admitting...we all need help with this. We just didn't know how else to take care of Mom's situation any more. I began to drink alcohol at odd hours of the day. One at 10:00am. just to get me throught the morning, one in the afternoon, a couple at night to help me relax.
|Oh boy..where do I begin about the Hospital. It was so horrible to see my Mother on the Physciatric Ward of the Hospital. She was so confussed as to where she was. Sometimes she believed it was a Hotel. Sometimes she insisted she was at the bank. Other times it appeared as if she had a job there. (so she believed anyway) If we even dared mention the word "NURSE", or "HOSPITAL", she would get very irrated and very confussed. It wasn't worth it, so we usually just played along. My Mother was in the Hospital a total of 13 days. (or was it 15?) The reason I'm not sure, is because I was not there for my Mother the last 5 days or so. I gave up, and I need to tell this story,and explain the why.
I guess it all started because of the floor that Mom was on. That was horrible to see my Mother like that. But that's not why I lost it. I could have dealt with that. I have dealt with a lot since we suspected AD in Mom. It was so hard to go see my Mom, but I loved her and wanted to be by her side during this time. And every day we learned something more about Mom because of the on-going evaluation she was undertaking there. None of the news was good, but it was news. All the answers to all our questions were there at our finger tips now. We were all so scared of the final report. Day by day, we played the waiting game. Waiting, wondering, hoping for the best outcome of it all. In the meantime, we tried to make our visits happy for Mom. But something stood in our way. GERALD!!! This male companion of my Mother, still did not understand the severity of it all. He started threatening us that there was no way our Mother would go in some Nursing Home. One day he told us that he was working with our Mothers Attorney and planning on marrying our Mother so he could take care of her the rest of his life. HOW DARE THIS MAN!!! Who does he think he is?!!! My sisters and I were all furious with him. This mans own family was upset with him. Even this man's own Priest was advising him to back out of the situation, but this man would not budge! He stood his ground and was at the Hospital morning, noon, and night.
I would come home, after an encounter with this man, and I was an absolute wreck. My heart was racing, my hands clenched in a tight fist, I'd be pacing frantcally, and ready to bite off anyone's head who dared approach me! Two beers would be gone before I knew it. Then I would spend 20 minutes or more crying.
I knew I was in a bad way, but could not get out of this horrible cycle for at least 2 hours after seeing this man usually. I tried being nice to this man. I tried understanding and letting things be. I tried to get along with him. But the feelings that came out of me when I finally released them at home was taking a toll on me and it wasn't fair to my family. My twin is pretty much the same way but she is more verbal with people and less tolerable than me.
This is when it got real ugly for my twin and I. Pam and I have never been the type to take crap like this from anyone! This man would try and say crap to us in the hospital like that stated above, and we let him know exactly what we thought of him for it now. This man looked innocent enough at age 78, and had all the nurses fooled up there, but Pam and I knew better. This man even sweet talked my other two sisters into believing that he would cooperate and try to back off some. But this man was a liar, and did just the opposite. Every time we ran into the guy at the Hospital, he would start crap with us. Once I was visiting with my Mom and we were walking down the hall, when in came Gerald, HE called to her like a DOG, whisteling to her until she was distracted from me and went to him. HOW DARE HE!!! This was my Mother not some dog he owned! My visit was over, he saw to that. He kept mom talking directly to his face and would whisper things in her ear if she turned away to keep her attention on him. He would even kiss on her frequently to make me feel uncomfortable in hopes I would leave. IT WORKED! I couldn't stand it!
This %&*(*_^$#^%$ of a man, had my Mother wrapped around his finger! I was at my wits end! I had nothing else left in me! I called my older sister to tell her that if he isn't taken off the vistors list at the Hospital, I just coudn't handle any of it any longer!
She called this man because she was furious with him, and she had every intention of telling him to stay away from Mom. But she did it again!!! She allowed herself to be sweet talked by this guy. She called me to tell me that he promises to behave himself, he was sorry, and he would stay away for awile. She told me that he agreed to only visit Mom during the day, so that Pam and I could visit her in the evening without him being there. She said he agreed totally! Ok....I'm no idiot and knew this guy had no intention of keeping his word. I told my twin about the conversation I had had with our older sister Jennifer. I did not visit the next day, but my twin did. OMG...it was so ugly! She called me balling her eyes out about running into this man. It was at night, when he should not have been there but he told my twin that he had every intention of seeing our Mother whenever he damned well pleased. Pam started yelling at him. He then told my twin's kids (they were with her), that their mommy (meaning my twin) was a very sick person in the head! (TO HER KIDS he said this) It got real ugly with words, and Pam is the one who ended up leaving again because the nurses said that PAM was the one causing the problem. "THAT'S IT" I said. I CAN"T TAKE IT ANY MORE!!!! I called my sister and demanded he be taken off the visitation list at the Hospital. Jennifer was furious over what had happened. Jennifer was so mad at this man but guess what happened when she called him. YEP! She must have let him sweet talk her AGAIN!
I called my little sister even though I knew what her answer would be. Keep in mind, this man, Gerald, is my little sister's Father-in-law. I told her what her Husband's Father was doing and I wanted him stopped! She appologized and told me that she couldn't do anyting eles about it because it was causeing too much pressure on her relationship with her husband and between her and her husbands family, and between her husband and his father. She said, whatever you want to do is fine with me but leave me out of it. Well, I knew Kathy and her husband were very upset with Gerald but to turn the other cheek......IS THAT RIGHT?
I called Jennifer the next day to see if she had taken him off the list so I could visit Mom without this man upsetting me. I explained to her that I just couldn't take it any more. It was hard enough to go to the Hospital to see Mom in this state of confussion, and to deal with the daily results of her tests, and to deal with the fact that it was indeed AD, and to deal with the upcoming issues of what we were going to do with Mom, BUT...to deal with this man was more than I could take. I was at my emotional limit!. But when my sister spoke, could not believe my ears. I remained silent while she spoke and I remained silent long after she stopped speaking. I just could not believe what I was hearing. Jennifer no longer saw this man as a threat, she believed he would back off once again and keep his word this time. Jennifer said that he does Mom a lot of good. He is able to be with her during the day while we work and Mom likes his visits. She said he would not show up at night though so Pam and I could visit. I just couldn't believe my ears. What a fool I thought. I just felt as if I lost my best friend. I told her that if that was her decision, than I was no longer behind her decisions and she and my little sister could handle the problems with Mom by themselves.
I hung up the phone with her and felt so alone. More alone than ever in my life. I could not believe that she would allow this man to remain in the picture after all he has done. I knew that it would be the last time I spoke with my sister for quiet some time. I don't know if I can ever forgive her for this decision. I ask God for help, but I hear nothing. I feel nothing at this time. I seem to have even forgotten how to pray. I no longer no what to ask for.
He is the one who took mom to Nebraska and she got lost for 16 hours or so because of him. He is the one who allows her to drink heavily, then send her home in her car. He is the one who has no morals and kisses my mother in front of her own children. He is the one who started crap with us in the Hospital. This man thinks he has a real loving relationship with my Mother. But what real relationship is it, when started with a woman in Mid stage AD? Pam and I gave 100% of ourselves to our sisters during this time of tragedy. We did everything they asked of us, and helped in everyway possible for years. How could they be so cruel as to do nothing about this man who hurt us so bad? How could they turn their backs on us like this? How could they allow this man to continue this fabricated relationship with Mom. Tell me this....if the situation is so ok between this man and our Mother, than why is it they too must turn their back when this man is kissing my Mother so passionately in front of us children? HOW?
I got very depressed and could not see my Mother the remainder of her Hospital stay for fear that I would run into this man. That, and I could not see my sisters who basically chose this man over Pam and I. I knew of the day when Mom was being moved into a Nursing Home and I was originally suppose to help in the move. I could not! I did not! I remained empty, and without feeling much of anything for some time. Then I began to surf the internet for someone, anyone who would hear my story. I needed to tell my story. I needed some insite. I needed guidance. I needed to feel like I wasn't alone and odd with this disease. I found a wonderful site with many "Angels" to talk to. I clicked with someone and the words just poured out of me. I began to realize that the more I opened up and told my story, the more I began to heal within myself. My angel friend, Brenda, helped me so much!
|After realizing that I needed help, and finding the right people to talk to who had some experience with AD, I starting feeling like a human being again. I knew I was not alone. Other people share similar problems like mine. People who deal with AD victims, share the same feelings and emotions as I, and I found out that it was normal to experience many of the emotions I was having. I wasn't insane, I was just totally stressed out with just cause. What I had been through in the last couple of months was enough to make the most stable of person to throw up their hands and say..."I've had enough!" With the help of my new found friends, I found God again and realized he was with me the whole time, just waiting for me to talk to him again. My new friends opened a world of Poetry to me also. I didn't understand why they wrote the poetry at first, but the more and more I read their poems, the better I felt. It inspired me to start writing poems for myself, and I discovered it was a world of words that was healing to the soul. The more I tried, to put it all into words, the better I felt. And the better I felt, the more I understood of the disease itself. I began to look at the whole picture through a new perspective. And the more I learned about the diseae from the AD victims view, the more empathetic I became. And the better I felt. How do you feel when you walk into a room for something and forgot the why? What were you going for? What were you doing? What were you about to say to someone? How would you like that feeling every minute of your existence? There is no why for the disease itself. It is, what it is, with no one or thing to blame. But talking about it, sharing your feelings about it, releasing those fears, concerns about it will help.
I took two weeks off before I could finally see my Mother at the Nursing Home. During this two week period, I felt the pain ease with each day. No sisters, No Gerald, No Mom....just my family again, the way it was months before the Hospital. I started drinking less. I got back in touch with my old self. I was gaining the fuel needed to revive myself to go see my Mother. When I finally felt whole again and the end of the two weeks, with the help of people who understood about what I had gone through, I set my mind on what was the real goal.
I had to figure out that it will not be up to anyone else to make me happy. What was it I wanted? I wanted to see my Mother! Why did I want to see Mom? Because I love her and don't want to miss out on what I might have left with her! Who was I doing it for? My own peace of mind, knowing I did what I could for Mom and not letting anything get in the way! I finally saw the light and it hit me like a ton of bricks.
|"The Nursing Home"|
|Knowing I had support, from others who have experience with AD, and the help of my husband who was more than willing to go with me to the NH, I managed to get my courage up for the visit. I was still scared though.
I called my Mother first. Wow...I hadn't talked to her for over 2 weeks. When she picked up the phone I started to cry just from hearing her voice. I had no idea I missed her that much. Perhaps it was the guilt though that made me cry. I regained control quickly and told my mother how much I missed her voice, and how much I would like to see her. It felt like a ton of wieght being lifted from my shoulders when I said those things. I knew at that moment, the AD within my Mother was not going to stop me. Gerald was not going to stop me. My sisters were not going to stop me. I still needed my Mother. I needed her love, whatever she had left to give, and I needed her to know that I love her too. My Mother is not the same woman now, but I can find the love there, I can find the "mom" in her sometimes still, and I need that and believe she needs me too. I know she does.
When I saw my Mother she was coming around the corner with a new male friend she had made while she was in the NH. I like this man very much. He is so polite and very nice. He is very active like my Mother and she seems to have latched onto him very much. I know this is horrible, but I just could not help myself when I busted out laughing. I immediately thought to myself...If GERALD has such a hard time sharing my Mother with her own children, how does he feel about the new man? LOL I asked the nurses if Gerald was visiting Mom still and they said, oh yes, we know Gerald. Whatever...I didn't want to know any more than that. I shouldn't have even asked. But then was happy again when I turned around to see my Mother clinging to this new found male friend. It just delighted me so. I'm sorry...but what goes around, comes around!
I had a very nice visit with my Mother. That night I visit with my Mother, I was given a most wonderful gift I will always cherish! I think God gave me the strength to try and he must have had a hand in it, in other ways too. For the first time I can remember, since a child under 12 most likely, I decided to take my Mothers hand. To my greatest surprise, she allowed me to do so, and we walked down the hall, back and forth, hand in hand! I never wanted to let go. In all my life, I can never remember feeling closer to my Mother than I did that night! I know God was with me because I asked him to be.
Leaving my Mother was so difficult though. And just like all the nights in the Hospital she would try to leave with me. Try and make excuses... Try to explain why she must leave, Try to convince me she doesn't live there and needs to go home. It is so hard to get away.
I know she is safe though and it helps to ease the guilt but it doesn't make it easier to turn my back and walk away. This is my Mother! The woman who gave me life.. The woman who took care of me when I was sick, and provided for us by sacrificing things for herself. It just isn't fair to see anyone go through something like this.
|"Long Road Ahead"|
|I know this journey through AD is not over yet! The road will be difficult for my Mother and it will take it's toll on me as well. My Mother is still only in the Mid Stages of AD. What will she be like this time next year? Will there be a next year? Will she know who I am? Will she still be walking and talking? The uncertanties lie ahead.
I have vowed to see my Mother every Friday and drive the hour it takes to get there. Hopefully she will be moving to an even nicer NH, that is closer to me, in the near future.
I saw my Mother again, and I had to hold the tears back as I spoke to my Mother. My Mother must have a clue about her situation because she asked me about her house. She said...Pat (my "Twin" name) I know no one has been out to the house for some time and I am worried about it. I assured her that I would keep an eye on it for her and would not let something happen to it. She thanked me from the bottom of her heart and said this...
"I know I will not go home, and thats ok, I understand...maybe you could get the house."
My heart just sank! I said, "Mom...that's so sweet but no...that is your house and I will check on it from time to time for you." She said, "But I am here, and know I probably will never see it again" I said, Mom? Do you know where "HERE" is? She said what do you mean, I am here! Then I could see her start to become agitated so I dropped the conversation and told her how much I love her! It worked and she settled down as we walked the halls together, hand in hand again. My Mother allowed me into her world tonight. It was a world of knowing and yet not knowing. Feeling and yet not really feeling.
You see, that house, her pride and joy of what she worked so hard to keep and maintain all her life was now something she could finally let go of, but this was not my Mother. For if in her right mind, she would never have told me that she wanted me to have it or any one else, unless over her dead body ( That's how Mom would have said it anyway) My Mother worked so hard to have a NICE house, NICE clothes, NICE things to adorn her NICE house. She always told us that she wanted the best, that she could give us. But "Things" in life always seemed to have more meaning to her than the people around her that tried to get into her life and share the love. The barriers my Mother had put infront of her, since her own childhood, were finally being taken down. I discovered that I CAN talk to my Mom. I can show her my love now by holding her hand and walking with her, while I say, I love you and miss you so much Mom! Mom was finally allowing me to be there for her and let me see her feelings. We discussed a lot that night and I heard a woman with no obsticles or barriers to cross any more. She seems more peaceful and loving. But I also saw the scared child within. I know I still need my Mother, and now I know she needs me to.
For now, I can try to find something, out of all of this, if I just look hard enough.
|"POEMS by Patty"|
|As I stated somewhere above, Poems have been very healing to the heart and mind. So I would like to share a couple of mine with any one who would like to read them. I do not claim to be any Poet, or even someone talented with words, but these came from my heart. They helped me say things that I might not have otherwise. They helped me deal with issues and let go of others. I dedicate them all to my Mother, Clarice.|
"Something to be Found"
Some feelings and emotions are better left for dead
And some thoughts, better left unsaid.
There is something greater in us, to be found
After all the barriers are broken down.
When words seem to evade even your own thought
Try to remember, God loves you a lot!
Then speak the words from within your heart
A true gift given, a glorious start.
Share your hurts, and all the glory
One day too, you can tell your story.
The healing will begin, when you share within
The heartache gives way, for the final win.
The one you knew, is still really there
You must look harder, when you really care.
A touch, a kiss, there is something to be found
Pray if you must, for some higher ground.
Now and forever, there is always something to be found.
C2000 Patty Fine
Call out to all, this is my Mother
Even though it seems she is someone other.
Once such a strong fighting soul
Remembering for us now, a life long goal.
A woman of strength for her generation
With this thought a new revelation.
Things once important, no longer to be
It is the love you hold dear, that will set you free.
Forever wandering and roaming the halls
Somewhere greater to be, than within your own walls.
Beyond this life, one day you will find
A peaceful place to rest your mind.
I know the memories are fading, and becoming a blur
But I will remember for you, the way they once were.
So rest your mind Mother, and let it be
Give into the love that will set you free.
Thinking of you each day and night
To give into the grief, just doesn't seem right.
I know your days now are such a chore
And I want for you so much more.
We must all look for happiness within our own mind
For many here, it is just harder to find.
Though it sometimes seems that there is nothing to gain
It is my love for you that will prevail and remain.
C2000 Patty Fine
|I hope in some way, that my story, at the very least, will let others know that they are not alone in this horrible disease. There are people out there who really care and empathize with the struggles and hardships in dealing with AD. The wonderful group I joined is the most loving and supportive bunch of people I could have ever hoped for. I found them through Egroups.com and the group was called PASSAGEINTOPARADISE. The group has been shut down now but there are others out there who can help you. Below are just a few helpful sites that will give you much information and links to other sites.|
|"UPDATE" June 2001
I can't believe almost an entire year has gone by since we had to place our mother in a nursing home. Mom has been in a brand new nursing home since it opened up about 8 months ago. We were lucky enough to get her into it the day it opened. It's a beautiful new building built just for AD patients. Mom has a private room with private bathroom, and it's beautifully decorated. Best thing of all is it's only a 30 minute drive from me, down the highway. The nurses are all so wonderful there and we have gotten close to all of them. They love mom and are so good with her.
It took a few months for mom to adjust to it though. Mom refused a bath or shower for 2 months straight for fear of the water. Finally...a mild tranquillizer was given right before they tried to bathe her and it worked for 2 weeks to come. Then they stopped the tranquillizers and mom had adjusted enough to do it willingly now.
My mother is slipping into the later stages of AD. She can no longer read, or write but a few words she can somehow recall occassionally. Most of her spoken sentences are nothing that makes any sense at all any more. She makes up words when she can not recall them, and her train of thought is so bad, that most of what she says sounds like this: That is trafvuifsh so do you twralkfisling a is that your sister over there...when skurulkher sduhlkshlkjdsh did she? But sometimes we are lucky enough to get the most of her sentences and figure out what she is trying to say or ask us. It's just so damn sad to see her like this though.
Mom can no longer recall any of the grandkids names and acts like she doesnt know who they are most of the time. She'll say things to them like: "Where is your mommy?" things like that. Mom doesn't even recall our names most of the time. (Her own children) But on occassion, she will speak our name, and accually get it right, but it's becoming more and more rare. But she does always seem to recognize us when we walk through the door and she is always happy to see us.
My father, whom mom resented and hated all these years, and spoke nothing but ill thoughts of him; is no longer an issue with her any more. You could even say she speaks of him in a kind and loving way by recalling things of him with us as small children. Many times, she'll insist that one of the men at the nursining home there is our Father. We tell her no he is not, but she never accepts our answer. Sometimes, Mom will even insist on some of the woman residents are our sisters. We just shut up any more and smile, so we don't upset mom.
Mom has forgotten how to take care of herself also. She uses toothbrushes in her bathroom to brush her hair, when a hair brush is right there for her to pick up. She has also started to have accidents in her underpants. When she walks, she is constantly passing gas and doesn't seem to be aware that it's socially not acceptable. She always has a funny smell to her now....not the wonderful smells I remember from expensive perfumes she would buy.
Her health seems to be good though, and she still paces the halls always trying to find something to mess with. But her foot is getting more deformed from arthritis and it causes her so much pain. Yet she knows no better, and can not stop herself from constantly walking. She can not sit still for even a minute or two. I get tired and sit, and am still tired just from watching her when I visit. It's so bad, that it's sad to watch. It's sad to watch someone not be able to rest for a view minutes when you know they must be tired from walking. My visits have decreased to about once every 2-3 weeks usually but after a good visit...I tend to want to go back sooner. Sometimes we leave crying. Other times we leave needing a beer to help us forget. And some times we leave feeling such heart ache from leaving her there....but there are a few times we have left feeling content, and happy about our visit too.
We hate the fact that she is there...but we had to do what was necessary to keep her safe and healthy.
Just a couple of weeks ago, my mother had a very short return back to reality. They say it can happen and it did. My twin Pam was upset by something my mother was saying and she started to cry. Not normal for us to do infront of anyone. She could not help herself though and the tears just fell. My mother, in a calm reassuring motherly voice, picked Pam's face up slightly so their eyes could meet, and my mother said this to her: "Pam, do not cry for me...I am a strong woman, and your not to blame...I'll be alright" End Quote
For just that moment in time, mom seemed herself again. We believe it was really her or at least need to believe that anyway. Even though we were never really close to our mother without AD, we feel closer to her now in a way and we need to be with her. I use to think I would not cry at her funeral...I was wrong. I will cry. For many reasons the tears will flow and come in a flood.
HEAR MY PRAYERS DEAR LORD!
God let them find a cure for this horrible disease one day. I know it will not be in time to help my mother, but no one should have to watch someone suffer with this disease. It is so not fair to end life this way!
I know this doesn't sound very nice, but I've talked to others who also shared the same thoughts. I simply wish for my mother to pass away before it gets worse. I've been told that the AD victim don't really suffer but, how can they not? I know my mother would not want us to see her like this.....be like this.....end life like this. And even though it is hardest on us kids watching her go through this...I do not feel selfish in asking God to take her now. I pray he does so soon. This is no life for her, and I want her to go on to a better place. I do not want to see her body shut down as I know it is in her future if she lives another year. I don't want to walk into the home and see her not have a clue as to who I am. In a year's time, my mother went from looking at least 5-10 yrs. younger than her real age, to a woman that now looks 5-10 years older than her real age. That's a huge change to see in someone.
What will my mother be like this time next year? Do I want to know? NO! But I will still visit...and continue to leave crying if I must. I love you Mom, and will try to remember you as the strong-willed woman you once were.
|If you, the reader of this page, is in need of help with this topic, please write. You are not alone!|
My mother seems to be more content at the nursing home. Mom can sit still now for long periods and she doesn't roam the halls near as much as she used to. There is no longer the need to constantly try and escape out the doors either. It's a much nicer visit now, and trying to leave isn't near as hard for us kids.
Mom plays with baby dolls now, and really believes they are living and breathing. It's odd to see my mother doing this, but she is so loving to watch at the same time. It's the nurturing part of her that makes me feel warm when I watch her to this. I think I'm glad she's in this stage. She seems happier... More at ease with everything.
Her health is still good.
We recently took mom out to eat...it was a Christmas eve dinner. I'm including a photo of that get-together. Compare the difference with the picture just taken 1 1/2 years ago. Big difference!
I love you Mom.
|Mom-1 1/2 years ago|
My mother just had her 3rd heart attack but is still a fighter and remains at the nursing home. She's strong willed and not ready to leave this world yet, so you fight for life Mom! Whatever that is at this stage...fight if you wish.
Other that that, Mom is doing pretty good. She's gained a lot of weight though and looks more plump but still just as sassy as always. She's usually in good spirits and is sitting more than walking these days. It's finally all evened out for her. They are good visits when us kids go and see her and she's always making us laugh. She's too funny at times with things she says. Not much makes sense when she speaks but we get the idea behind those made up words of jargon talk.
We love you Mom!
Yes my mother is still alive...if that's what you want to call it.
My sisters and I have been called to the nursing home on numerous occassions, with word that our mother won't make it much longer, yet every time, she still hangs on with some will of living somehow. She doesn't speak any more and is pretty much bedridden or in a geriatric chair most of the time. Hospice services are taking care of her and the nursing home has moved her out of the AD unit and into the other part of the nursing home. She's beyond the care of AD unit they say, and they needed the space for someone else who has AD and can benefit from that unit. This all happened just after last Christmas and I have not had the will to visit my mother since then. I can not bare to see her in the nursing home and not the nice AD unit connected to it. I can not bare to see her the way she is any longer. I simply wait for the inevitable pending death of her body. Her mind has been gone for a long time...all that remains is a shell of her body, in which it still fights for the right to live. It's a cruel hard fact that I choose not to witness any longer. I'd rather see her at her funeral than to see her the way she is any more. I'm simply not that strong any more and I've moved far enough away that I use that as an excuse also now. A 3 hour drive, just to see the empty shell of my mother doesn't entice me in the least. Perhaps it's my way of shutting down on the uncontrollable situation and preserving the memories of her before she became bedridden. My last entry will be of her death. That's all I have left to write about.