Monday, February 27, 2012

Blog 17: On The Floor And Keeping Watch

When I was staying with Mom that first summer of her diagnosis, and after moving in with her in the fall, I slept in my old bedroom upstairs, the room I had from the ages of eight to eighteen.  I never thought I’d sleep in that room again, and there I was, back home, 35 years later.  I remember laying in bed and reflecting on what life was like back then.  Things were so simple and carefree all those years ago, when it seemed nothing bad could ever happen.  The sounds of the lawnmowers outside, kids playing down the street, the gentle breeze blowing the curtain open, all reminded me of those young years I hung out in my room with my best friend, doing homework, writing in my diary, or getting ready for school.  I was quickly brought to reality when I heard Mom call for me and I would rush downstairs to see what she needed.  There she would be, looking frail and older, showing visible signs of dementia, and needing me, and I was brought back to reality.  
When Mom kept getting up during the night and moving around the house, I felt it was best to sleep downstairs to keep watch on her.  I worried that she might turn on the stove and forget about it and then the house would burn down.  What if she choked on her food?  I couldn’t live with myself if that happened.  The problem was, there was only one bedroom downstairs, and that was Mom’s room.  The only option was to sleep in the living room.  Since the couch was not very comfortable to stretch out on, I decided the only other option was to sleep on a sleeping blanket on the living room floor.  This was to become my bed for the remaining months that I stayed there.  Every night I would unroll the blanket and lay down, exhausted, after Mom went to bed.  And in the morning Mom was usually up first, so I would get up and roll my bed up and we’d start the day together.   Here's a picture of my bed.

There were nights that Mom didn’t sleep through the night, in fact, that happened often.  She would usually go to bed pretty early and then wake up before daylight and be ready to start her day, but some nights she would be up still at 10:30 or 11:00.  After she went to bed that was when I could relax and watch television or talk on the phone.  Mom didn’t like it when I was on the phone when she was around.  She seemed to think I was ignoring her and she would often tell me to get off the phone because she wanted to use it, even though I was most often using my cell phone, not the home phone.  She would interrupt me and start talking, not seeming to notice that I was on the phone.  I accepted that Mom didn’t like it when I was on the phone and I would always try to make important phone calls or personal calls when she was napping or in bed for the night.  
Some nights Mom would get up in the middle of the night and turn on the lights and go to the kitchen to fix something to eat.  Then she’d come into the living room and turn on the TV.  I would ask her to please turn the TV off because it’s the middle of the night and we need to sleep.  Sometimes she would apologize and turn it off, other times she insisted on watching it.  She could be stubborn.  It just depended on her mood.  I remember a few times she’d yell at me for sleeping there and tell me to go upstairs and sleep.  Then she would constantly turn on the ceiling fan and then turn it off, turn it on again, and turn it off.  This happened all during the day, too.  
Mom wasn’t always obstinate.  She just wanted to live her life the way she wanted and it wasn’t her fault that I invaded her territory.  If she wanted to get up in the middle of the night to eat a snack or take a shower, then she should be able to, and who was I to tell her not to?  Usually she wasn’t up long and she would go back to bed.  Other times she would fall asleep in her rocking chair (she loved that rocking chair) at the foot of my make-shift bed, until she would wake up again and start rocking and/or get up to get something else to eat.
I have to admit that once in awhile I got irritated that Mom would keep me up during the night.  I’m one of those people who needs eight hours of sleep to function well the next day.  Mom would take naps during the day but I could never get used to doing that no matter how tired I was.  Mom’s naps were always taken in little fragments.  She would often sleep for 5 minute stretches, and occasionally she might dose off for an hour or two.  I’d watch her enviously, because I couldn’t fall asleep like that.    
There were times that I’d hear Mom get in the shower in the middle of the night. Often I would have a struggle to get her to shower during the day.  She would say she just took a shower yesterday, even though it was three days ago that she did.  It was an ongoing battle that she usually won.  So when she took a shower at 2:00 in the morning, I let her do it.  I would listen for her to make sure she got out ok and turned off the water.  Once she was in there forever.  I was worried and went to the bathroom to check on her.   She was ok and out of the shower, but the water was still going.  It was coming out cold.  I don’t know how long she was actually in the shower. 
It’s funny when I look back on it, how Mom would sometimes get so irritated when she saw me sleeping on the floor.  She would say, “Get up, you’re always sleeping!” Or she’d tell me to go upstairs and sleep in the bed.  I’d give her the excuse that it was too hot or too cold up there.  That usually worked because she did know that.  Other times Mom just accepted that her oldest daughter was camped out on her living room floor, whether she understood why or not, she realized I wasn’t going away. 

Saturday, February 25, 2012

Blog 16: 10 Degrees

One of the worst experiences I had while living with and caring for my mom was the night that she forced me to leave.  It was a January night in the dead of winter, snow on the ground, and about 10 degrees outside.

We were having a really rough day.  Mom was on my case all day long.  She wanted me to leave and go to my house.  She kept telling me I have three houses (not true) and I need to leave her house because I'm free-loading off her.  She said I'm costing her money...I was eating her food, using her electricity, and not paying any rent.  She didn't realize I was buying the groceries.  t tried to explain to Mom that I didn't have three houses, that I already sold my house because I was moving, and I have no place to go.  She told me to get a hotel then.  I tried to appeal to her emotions.  It was of no use.  She wanted me gone.  She was not acting like the loving Mom she used to be.  I mean she was sometimes, but when she got in one of those moods, she was downright mean to me.  It really, really hurt my feelings.

Looking back, I had put my life on hold to come and care for her.  I had broken up with my boyfriend and was going through a huge change in my life.  I had already planned to move to another state before Mom was diagnosed with Alzheimer's.  I was scared.  It wasn't easy street.  It was one of the hardest things I ever did.  I wanted my Mom back.  I wanted her usual, caring self back.  I wanted her to put her loving arms around me and tell me everything was going to be ok.  I needed her, I needed someone to make things all better.  My sisters weren't there for me either.  Nobody understood what I was going through.  It was so hard for me.  And dealing with my Mom's disease made it all that much harder.

I tried to ignore Mom's requests for me to leave.  I tried to reason with her but you can't reason with someone whose mind has been taken over by an evil, ugly, relentless disease.  Mom threatened to call the police on me.  She was on me constantly.  Finally she did call the police.  They came and she told them she wanted me to leave but I wouldn't go.  It was so hard hearing her tell the officers that I was free-loading off  her.  I told the officer the situation, and they understood and tried to calm Mom down.  Mom heard me tell one of the officers she has Alzheimer's.  She laughed at me and told the officer I was the one who was sick, not her.   When she seemed to be calm enough, they left.  As soon as they were gone I tried to get her to go to bed.  She wouldn't.  I tried to go to bed and she wouldn't let me.  She started in again.  Over and over again she told me to get out of her house.

I couldn't take it anymore.  I was either going to loose my mind or say something really stupid and regret it later.  So I got out my car keys, gathered a pillow and blanket, put on my coat and gloves, and went out to my car.   Mom shut the door behind me and locked it.  I got in my car and started it up with the heat full blast.  I didn't know how I was going to sleep in the cold because I couldn't keep my car running all night long.  I was not going to leave her there alone.  I was going to sleep in my car.  Somehow I felt that I was still able to protect her, even from the outside.

After the car warmed up I turned off the engine.  I laid the driver seat back and tried to sleep that way but I couldn't sleep.  So I crawled to the backseat and curled up in the blanket.  Every so often I would sit up to look at the house to see if I would notice anything strange going on inside, and see if Mom might be looking out the window or coming out to get me.  I don't even know if she knew I was still there.  She could have seen my car in the driveway, but I don't think she cared to look.

After awhile I did fall asleep and woke up when I was freezing.  I started the car every so often and slept off and on.  In the morning, as soon as the crack of daylight, I got out of the car and went to the back door and unlocked it and stepped inside.  I had to go to the bathroom so bad.  I usually have to get up during the night to go and I had been holding it for hours.  Mom was sleeping in her rocking chair, so I tiptoed down the basement to use the bathroom, then tiptoed upstairs and slept in the upstairs bedroom.

I think I slept for an hour or two and woke up when I heard Mom downstairs.  I went downstairs and she was surprised to see me there.  She was mad but not as mad as I thought she would be.  I guess she had some time to herself and time to calm down.  I could smell the scent of cleaning products and I assumed Mom did some cleaning, and I saw she did laundry, too.  I kept the house clean but she wanted to clean like she used to I guess.  I noticed she went upstairs and got my dirty clothes and had washed them too.  I was shocked. She washed them and folded them and put them upstairs for me.  It made my heart sink.  My mom was still there, my sweet caring Mom.  Like I said before, she showed herself from time to time.  When I thanked Mom for washing my clothes she said something about not being as mean as I think she is or something like that.  I wish I had that darn journal because I wrote down exactly what she said and I can't remember exactly what it was.

Spending the night in my car was a horrible experience.  It still hurts to think about everything that happened leading up to it, but I've also been able to make light of it and even laugh about it.  It's all a part of the experience of being a caregiver.  You have to take the good with the bad.  Like having to spend the rest of my nights there sleeping on the floor.

Wednesday, February 22, 2012

Blog 15: A New Life With Alzheimer's

I kept a journal during the time that I was living with mom. I felt that it was important to document some key things that were going on then.  I wrote down things that happened during the course of the day…I quoted things she said that I thought was noteworthy. I wrote of the good times, the bad times, the funny things Mom said, and the mean things, too. I wrote of her doctor appointments and how those went. Some of my sisters also wrote in the journal when they were with Mom, but it was mostly me who did the journaling. It was a way for all of us to know what was going on daily with Mom.  So when someone came over to stay with Mom, they knew how the day or week went.  When I moved I gave Lynda the journal so my sisters could continue to write in it.

That journal is gone now, supposedly 'lost in the shuffle',  so I don’t have accurate dates and have lost some information that I could have blogged about.  I am writing much of this from memory, and as accurately as I can.  I have a pretty good memory, but I can’t remember everything.   I was so devastated that my sister didn’t place the same value on this journal as I did.  I don't know what happened to it, and according to Lynda, she doesn't know either.  Whatever the case, it's not available to me anymore.  When I found out she didn’t know where she put it, it made me feel like a piece of me was lost, a piece of my precious time with Mom was lost. I wished so badly that I kept it safely with me.  I'm so sentimental and those writings meant a lot to me.  I thought I was doing the right thing by handing it over to Lynda to continue on with it, and we would all have something special to keep forever. 

The first couple of months that I was staying with Mom she would do these chants. I call them chants because she would repeat herself over and over in a very soft voice. Most of the time she was totally unaware that I was around and listening to her.  She would be laying in her bed when she would say these chants.  Other times she would be walking to the bathroom, which she did constantly, and she wouldn't even realize I was sitting in the chair in the next room.  She would say things like, "I don’t know what’s wrong with me"…"there’s something wrong with me"…"I don’t know what it is"…."please God, please God, please God".  Each phrase would be repeated several times before she would say the next thing.  It was so sad hearing her say those things.  Her mind was doing some terrible things to her.  I would ask Mom if she's ok, and that would snap her out of it.  It was like she was in her own little world. She would also frequently say…I have to go to the bathroom, and repeat it over and over.  Mom was taking prescription drugs to combat the effects of dementia and I think it was a matter of finding the right combination of medication that would work for her.  I don’t know if the medicine had anything to do with it or if it’s just something that people with dementia do.  Eventually the chants happened less and less until they stopped happening.

We had to hide Mom’s medication because she had no idea how or when to take it on her own.  We had to administer her pills in the morning and the evening.  This highly perturbed her.  She wanted to be in control of her own medication.  The visiting nurses had discussed getting one of those pill dispensers for her but then we all felt that she would be too confused even then.  So, we had to find different hiding places because Mom would search the house and find them.  One time Kathy found a new hiding spot and put the pills under the bed in the upstairs bedroom. I’ll be darned if Mom didn’t find them.  I was there when she did a massive search throughout the house.  Boy, was she ever mad at me.   I caught heck from her and we had a bad day the whole day because of it. We had to hide her prescription pain medication too.  She insisted on having it in her drawer or in her purse.  I know it was a sense of comfort for her, knowing it was within easy reach if her neck or back was bothering her.  It was almost just not worth it to argue with her about it.  Instead, in the beginning,  I let her keep it in her purse.  It just meant monitoring her closely so she wouldn’t take more than she should.

I often refer to ‘we’, and that is because it was the same for my sisters if they were staying with Mom.  If I had to go out of town, one of my sisters would stay with her.   So we tried to be consistent in the way we did things with Mom.

I noticed Mom’s interest in certain foods and hobbies changed as well.  She used to paint landscapes with acrylics just a few years prior, but she lost interest.  She would still watch recorded episodes of Bob Ross on TV and she’d say, “I really need to start painting again.”  But when I would suggest going upstairs to paint, since she still had all the paints and brushes and blank canvases, she would always say no.  She loved drinking coffee in the past, but when she got Alzheimer’s she said she hated coffee and wouldn’t touch it.  She used to put 1,000 piece puzzles together, but that interest was gone, too.  Once I bought her a 200 piece puzzle and she did sit down to work on it with me and Kathy, and she was still able to put the pieces together.  But she quickly lost interest in doing any more.  Mom used to read the paper everyday.  She would pick it up from the front porch and read it with her coffee.  Not anymore.  The coffee ended first, and then collecting the paper came next.  I cancelled the paper, but then Mom suddenly noticed the paper wasn’t coming anymore and got upset when I told her I cancelled it.  Mom was also less interested in the television but she insisted she needed a new one…which she eventually got.

One of Mom’s favorite past times was going to bingo with my sister, Annie.  That was their thing.  Occasionally Annie would still take her to bingo, but Mom was less interested.  She said that Mom was really slow, but she enjoyed it.  Annie was Mom’s favorite during this period of her illness.  Annie had a lot of patience for her and they would take turns giving each other shoulder massages and rubbing each other’s feet.  But there were some problems developing in the relationships with the rest of the family.  I spoke of that in my last post.

Mom liked to go outside and walk around the block.  She was slow in moving but it was good exercise for her.  We’d get home and soon she’d be ready for a walk again.  So we’d head back out.  Also, Mom liked McDonald’s iced mocha and frappe drinks.  We’d take a drive to McDonalds to get her one and then she’d forget she had one and want one again. I’d say, "Mom you already had a mocha drink a little while ago".  Sometimes that would be enough, and she’d let it go, and other times she would keep asking.  Some days a sister would show up with one, so Mom got lucky and had two or three that day.  She seemed to crave those drinks.

I made sure I had healthy foods in the house for Mom to eat.  She liked my cooking and I made nutritious meals for her, since I tend to eat really healthy myself.  I loved preparing meals for her. Mom was able to go to the kitchen and get what she wanted to eat.  She loved to eat apples and bowls of cereal.  Her appetite was pretty good, but she was very thin.  It was hard getting her to drink water and I always tried to encourage her to drink more water.  She only wanted to drink juice, especially orange juice, and we would often go through a half gallon in just two days.

Mom still liked to do laundry and she would go to the basement to start the washer.  She would put just a few articles of clothing in it and when the clothes were washed she’d go back downstairs to put them in the dryer.  Sometimes she would keep going downstairs because she couldn’t remember if she had wash going or not.  I worried about her going down the basement stairs and I tried to tell her that I will go downstairs and load the machine.  But she wanted to do it herself.  Mom would sometimes do the dishes, too.   She didn’t always get them clean, and a lot of times I would rewash a dish or utensil before I’d use it, just to be sure it was clean. 

I was learning about Alzheimer's and Mom was learning what it was like to have a daughter live with her again.  We had struggles, but we managed to get through them.  Things weren't easy, and we weren't always happy campers, but I wouldn't change it for the world.  My next post is going to be a tough one, but it's what happened, and I feel it's important for me to share.

Thursday, February 16, 2012

Blog 14: Living On A Prayer

I have some very wonderful memories of the time I was living with and caring for Mom.  It wasn’t all bad.  We had some very touching and very wonderful moments, hours, and even days together.  
Some of my most cherished memories, were prayer time with Mom.  No matter the troubles we endured during the course of the day, having our nightly prayer seemed to wipe away all the hurt and pain.  I wanted Mom to go to bed peacefully, with happy thoughts, and feeling safe.  She would get herself in bed and I would sit near her on the side of her bed so we could say a prayer together.  She would hold my hand and we would talk about some of the fun things we did that day.  If it was a bad day, Mom didn’t seem to remember, and I didn't think about it at that moment.  I only brought up the good things.  Then we would close our eyes and bow our heads. 
At first it felt kind of strange holding my mom’s hands and saying a prayer with her.  Not the fact that we prayed, but the way we prayed.  I would say the prayer in short sentences,  and Mom would repeat after me.   Gosh, I have this warm feeling just thinking about it.  This is a memory I will always cherish.  I always felt that if she passed in the night, she would go to heaven peacefully and this would be my lasting memory.  All of those prayers brought us so close together.  Those moments made both of us feel so incredibly close and at peace with each other.  It did for me and I’m almost positive it had the same effect on Mom.
Before our prayers, I would say, “Mom, I want you to repeat after me and say what I say, OK?” To which she would reply, “Ok, let’s pray”.  Then I would tell her to close her eyes and hold my hand.  Mom was always laying down during our prayers, she kept her eyes closed until I said something that she questioned.  Then she would open her eyes and look at me and ask me about it.  I’ll give you an example.  Every prayer I would ask God to forgive me (meaning  she and I) for my sins.  Since she is supposed to repeat after me, it means her, too.  Mom, on several occasions would open her eyes, and with the love of a mother say, “But , Lizzie, you don’t sin!”  To which I would open my eyes and say, “Yes I do Mom, everyone sins.”  And she would say, “But you are so good.”  Sometimes I had to convince her that I am a sinner, even though she didn’t agree.  This was a great moment of affirmation that made me smile, my Mom did love me after all.  Of course I knew she did, but some days were just so awful that it made me question if she really loved me still. 
There were only a couple of nights we didn’t pray, and that was because neither of us was in the mood.  And believe me, that bothered the heck out of me.  
At the end of our prayers I would run my fingers through Mom’s hair and caress her like a child.  Then I would kiss her cheek and tell her to have sweet dreams, and that we are going to have a wonderful day tomorrow.  If we had a shopping day planned, I would remind her of that.  I just wanted her to feel good, and as happy as she could, because I was scared out of my wits what was happening to my mom and I feared she was even more afraid than me.  I didn’t want my mom to be scared.  It was her life being taken away.  But it was mine too, because my life has not been the same since learning she has Alzheimer's. 

Tuesday, February 14, 2012

Blog 13: Behind the Wheel With Alzheimer's

The money continued to be a source of concern for Mom and for her five daughters.  We wanted our mom to have her money, we just wanted to make sure it was safe and secure.  I knew how much that money meant to Mom.  We all did.  She was saving it for years. I think she felt like she was losing control of her life and having this money at her fingertips made her feel like she was in control of something.  
Other than me staying with Mom, Annie helped out a lot.  When I wasn’t there, Annie was there more than any of my other sisters. They had a very close bond.  Annie relied on Mom for comfort and solitude and an escape from her home environment.  She enjoyed being with Mom and Mom loved having her there.  The only problem was that Annie didn’t know how to divert Mom’s attention, or help her understand, when she started complaining about her money, or taking her pills on her own, or driving her car.  She would say things like...THEY won’t let you keep your own money, they want it all for themselves.  And...THEY won’t let you drive your car, and she would let her get a new set of keys made, and THEY won’t let you keep your medicine in your drawer so you can take it when you want.  She even told Mom to hide her purse.  I know this was her way of keeping peace in the house when she was with Mom, but it caused Mom to turn on the rest of us. I don’t blame Annie for doing what she felt she needed to do because she really didn’t know a better way to handle Mom’s incessant rants about those three main issues.  
Mom was also obsessed with taking Benefiber, and she was constantly thinking she had bowel problems.  It got to the point where she would be taking overdoses of that stuff.  She insisted she needed it and that I didn’t understand that she can’t go to the bathroom.  I knew she was going, she just didn’t remember she did.  She was always in the bathroom.  I think she had stomach issues from taking so much of the Benefiber.  I had to keep it away from her and then try to change the subject when she kept bringing it up.  I also had to keep her pain medicine in a place where she couldn’t get to it because she would sneak and take it, and I just couldn’t let her overdose on that either.  Mom would call Annie and tell her to come over to look for the Benefiber.  Then they’d go to the store and buy some more and Mom would go to her room and stick it in the drawer.  She wasn’t very secretive about it, and I would find it.  Mom and I went round and round about that.  But Annie would let her have it when she was with her, so I was the bad guy.
Our mom had a Honda civic that she just loved.  She was always wanting to drive.  When I first started living with her some of my sisters were thinking Mom could drive if someone was in the car with her.  I said it’s not a good idea.  The last time she drove she got lost, she would drive over the center line and she would turn in wide angles, stop and go at the wrong times at intersections, and do other things like that.  She was in no condition to drive.  
Well, one day I decided once and for all to put her to the test.  We were going to the grocery store and Mom insisted on driving her car.  I figured it was only a 1/2 mile away and I will grab the wheel if I have to.  She had driven there all her adult life.  She drove all over the road and then she needed me to guide her in the parking spot and tell her to brake.  When we left the store she would not let me drive.  I tried everything I could but she wouldn’t budge.  So, she backed the car out of the parking space, with my help, and proceeded to pull out on a busy street, in front of oncoming traffic.  Her reactions were very slow.  I wondered if she took a couple of pain pills she probably had hidden somewhere.  I said, “Stop!”  She stopped and then started to move out again.  She was creeping out into the street with cars coming from both directions.  I was clinching the seat as I said, “Stop Mom, there’s cars coming!”, over and over.  I got her to put the car in reverse and back up, where she nearly hit the car behind us.  Mom would not let me drive and it would have resulted in a bad scene if I would have even tried to make her move over to the passenger seat so I could drive.  I had to just let her drive, and pray we would not get into an accident.  After about 8 attempts, and my heart beating so fast, she pulled out into the street when I told her to.  When we got home I told all of my sisters what happened and that Mom can never, ever drive again!  Had I not been with her, she would have surely died, and she almost killed us both.
I hid her car keys again, but Mom did everything she could to get another set.  She would constantly look for the keys and ask for them. She had Annie take her to the car dealership where they made her another key.  I bet she had keys made at least twice.  I finally called the dealership and told them the situation and told them to not ever make her a car key again. 
One day Mom slipped out of the house.  After a couple of minutes I went looking for her and saw the garage door open and her backing out of the garage.  I ran outside and asked her where she was going.  She said she was leaving.  I opened the car door as the car was moving and before she could lock it, and put the car in park and reached for the keys in the ignition.  Her hand grabbed mine as we struggled with the keys. She was  hitting me and cursing at me.  I got the keys, but she grabbed them back and we were shouting at each other.  I got the keys out of her hands again and she clawed me with those long thick nails of hers.  I said, “Ouch, you’re hurting me!”  To which she squeezed harder.  Her grip was way stronger than I ever thought she was.  Mom gave up after a struggle and went into the house.  She was breathing hard and clearly upset.  We were both very worked up.  I didn't like doing that to her, but she could have killed herself or someone else if I would have let her go.  t put the car back in the garage and went to the house, checking out the scratches and gouges in my arm and hand.  Thankfully Mom didn’t think to lock the door on me, and I stepped into the house.  

I put up with a lot of abuse.  But I knew this wasn't my mom, my real mom.  Her brain was taken over by an ugly, evil disease and it wasn't her fault.  I knew Mom was in there because she showed me from time to time.  She wasn't always obstinate.  I had to be strong and do everything I could for her because she was always there for me my whole life.  
The next thing was getting her car out of the garage because that was just a tease for her.  The only thing is, we didn’t know what to do.  If we removed the car from the garage, when she loved that car, I would not be able to live peacefully with her.  Annie’s husband pulled some wires from the car engine so she couldn’t start it up.  And what does Mom do?  She had a neighbor come over and connect the cables and Mom snuck off with it.  I don’t remember what sister was with her, but it wasn’t me.  I told the neighbor not to do that anymore.  Mom was sly.  She tried everything in the book. The car keys were hidden and until we came up with a masterful plan, that’s the way it stayed, for awhile anyway. 
I felt so bad for Mom.  I know she loved her Honda and she loved to have the freedom to  come and go like she used to.  This was so hard, keeping her from those things.  She would often say she was going to buy a new Honda because hers wasn’t working anymore.  She would go to the garage and try to start her prized car, as I looked from the kitchen window with tears in my eyes.  Then one day she called another garage and had a tow truck come get the car.  I found out about it and tried to stop them but they were already loading it.  They understood what was going on after I spoke with their manager.  They were nice enough to keep the car at their garage for a couple of days until we found a place to store it.  
My sister Lynda was supposed to take the car out of the garage and store it at her house but she never got around to doing it.   She was stalling because she was too scared to cross Mom.  Then Mom called Annie and asked her husband to come see if he could fix it.  He was the one who disabled the car, so he just avoided it.  Mom would call Annie daily, to try and get her husband to come fix her car.  
Everyone was too scared to do the right thing, whatever that was.  All of us girls were not on the same page.  Mom was calling the shots, and each one of us did what we thought was best, without knowing if it was right or wrong...things were spiraling out of control.  We desperately needed help.

Friday, February 10, 2012

Blog 12: The Firestorm Begins

As I’ve mentioned before, when we discovered Mom had Alzheimer’s and she couldn’t live alone any longer, we soon realized we had a big struggle on our hands.  She didn’t believe she was sick, and she didn’t want us girls interfering in her daily life.  Things were really, really difficult in that first year because it was an adjustment for her and for all of us girls.  The thing is, Mom adjusted as time went on, but we sisters on the other hand, did not.

Mom had a large safe in her closet and none of us knew what was inside.  We speculated that it was insurance papers and possibly even some money.  I found a combination for it but I couldn’t open the safe.  She also had another smaller safe under her bed.  She would get that safe out almost every single day and night, and sit on the floor behind her bed and go through the contents.  She would do this for hours on end, and if I walked to her room to see where she was, she would look up at me and tell me not to come in there.  Many times I just let her be. 

One day when Mom had to go back to the hospital for some tests, I found the key to the safe under her bed and opened it.  I just had to know what she was looking at all this time.  Plus, with her telling the neighbors about all the money she has in the house, I felt that we needed to know what was in that box, and we needed to protect it.  It wasn’t too much of a surprise to see money in there.  But what was a surprise was how much money.  Thousands of dollars was placed in five different envelopes.  Each envelope was numbered and labeled with the amount inside.  She was saving money for us girls.  She always said she was keeping money aside for us, and she was definitely doing that.

I called my sister, Lynda, and I remember I was shaking so bad.  I said, “What do we do?”  We called Renee and decided that Renee would take the money and keep it safe.  It was weeks before Mom even noticed the money was gone.  She even opened the safe and didn’t notice.  All of a sudden, she did notice and all hell broke loose.  This was the start of a very bad situation that only escalated out of control and went beyond our wildest dreams. 

All of my sisters had agreed that the money was not safe in Mom’s house, all of us except Annie.  Originally it was just me, Lynda and Renee that made the decision to remove the money from the house.  When Mom realized the money was gone, we filled Kathy and Annie in about what we did and why.  Kathy was ok with it, but Annie was not.  I realized we should have told her from the very beginning.  That was wrong to not discuss it with all of my sisters.  We tried to tell Mom that her money was safe in the bank and it is still all hers and no one is going to spend it.  But Annie took Mom’s side and became furious that Renee had the money.  It fueled Mom’s fire.  Mom was ready to arrest Renee for taking the money and Annie was encouraging Mom to press charges.  The rest of us tried to explain to Annie that you can’t do and say those things to her because she doesn’t understand, she is ill.  It didn’t matter to Annie, and the only choice I had was to tell Renee to bring the money back.  I was living with Mom and I couldn’t take her constant threats and complaints and going on and on about the money.  It was stressing her out so much and it was driving me crazy.  So Renee returned the money and it went back into Mom’s safe under her bed.  

Mom also had a safety deposit box at the bank, where she had money kept, as well.  I went with Mom to the bank and she filled out some papers for me to be on her account since I was POA.  I needed to be on the account so I could pay all the bills and handle the financial affairs for Mom.  Mom always wanted to go to the bank and check on her money there, too.  One day she insisted on taking it all out of the safety deposit box at the bank.  I tried to convince her not to do that, but it was no use.  She insisted that she could keep better track of it at home because she didn’t trust the bank.  I talked her into bringing the money back, but then she wanted it out again and there was no reasoning with her.  None of us girls really knew how to handle these situations.  We were learning as we went.

Mom would put wads of money in her purse.  She always kept it right by her side, and like her safe under her bed, she would frequently go through the contents of her purse.  Before long Mom started hiding her purse.  She'd forget where she put it and then she would call Annie to come over and help her find it.  She wanted Annie at those times.  Annie would take her to the department store or to the drugstore and Mom would have all this money in her purse.  Mom also liked to bargain shop at the Goodwill store.  I told Annie she needs to keep an eye on every purchase Mom makes and make sure she doesn’t give the store clerk more money than she needs to.  I noticed she did that once when I was at Goodwill with her.  I don’t think the man was going to give her the money back until he saw me standing on the side, eyeing the situation. 

This whole money thing caused so many problems.  Annie felt that Mom should be able to have her money and do as she wishes with it.  The rest of us were worried that it would get into the wrong hands.  Mom could not be held responsible for her money because she couldn’t keep track of it.  She was forgetful.  We needed to be the responsible ones and keep her hard earned money in a safe place.

Mom would frequently pull the money out of the safe and hide it under the sofa or in her chest of drawers, or somewhere else in her bedroom.  She didn’t even know where she put it half the time and when she couldn’t find it, I would catch heck for it.  One time I was looking for her purse, that she was suddenly constantly hiding, and not remembering where she put it.  Who was she hiding it from?  She kept hiding her money, and now her purse.  One time she was complaining that someone took her purse.  While I was searching for it, I found several envelopes of money in the sofa cushions in her bedroom.  I didn’t say anything to her.  Then one day she accused me of stealing her money because she couldn’t find it.  I opened the sofa and said, “See Mom, I didn’t take it, it’s right here!”  That didn’t help, because she accused me of putting it there.  She was constantly moving her money around until one day we discovered $8,000 of it was missing.  Because there were other family members in the house at different times, and because Mom kept hiding it, it was hard to keep track of all of that money all of the time. I searched every possible place in the house and could not find it.  To this day we don’t know what happened to it.  But because that happened, it caused a firestorm of accusations throughout the family. Everybody started taking sides.

Thursday, February 9, 2012

Blog 11: Living In A House Where Alzheimer's Ruled

I moved in with Mom a few months after her diagnosis with Alzheimer’s.  My sisters and I agreed that I should live with Mom after I sold my house.  My move to another state was still months away, and at this point Mom needed a full-time caregiver, and I was the only one able to provide that care.  Mom certainly didn’t think she needed any help.  She could not understand why I was staying with her because in her eyes she was perfectly fine.  I was often yelled at and told to leave.

I set up appointments with visiting nurses to come to the house and after a couple of visits Mom was often rude to them when they arrived.  I think she felt like they were invading her privacy, and it’s almost like she felt like they were on to her.  She tried to fool them into thinking she was taking good care of herself.  When they asked when she took a shower last, Mom would say, just this morning.   She would tell them that she knows when to take her medicine and she takes it on her own.  Once in awhile someone would come and she would be courteous.  One of the nurses managed to get on Mom’s good side.  However, if Mom was having a bad day, this particular nurse would get the brunt of it. 

Mom even called the police on me a few times.  Boy, was that embarrassing!  The police would show up in their squad cars, and Mom would tell them that she wanted me out of her house.  She said that I have my own house.  She said that I was mooching off her and eating all of her food and costing her money. She said some other really mean things about me.  Things I can’t even bear to repeat.  I would try to hold it together, and each time the police came, I would pull one of the officers aside, as I choked back the tears, and tell him/her that she has Alzheimer’s.  Just telling others she had that horrible disease made it seem so real.  How could she sound so hateful towards me and my sisters?  For strangers to hear my mom talk in such a bad way about her daughters hurt so badly.  I didn’t want them to think she was a bad mom, or that we were bad daughters.  I only hoped they really understood that she was taken over by a vicious disease, that robbed her of her warm, affectionate personality. Each time the police came, I told them that she is a wonderful and caring Mom, and she doesn’t know what she is saying. Even though it appeared that she did.

Mom told the neighbors some of the same things she told the police.  She told her friends on the phone those same bad things.  Of course, they all understood the circumstances and that Mom was ill.  I knew that she wasn’t herself and she would never say those things if she were of her right mind.  It was those ugly demons that Alzheimer’s brings with it.  They took over my mom’s body and mind and gave her a personality of it’s own kind.  I knew she didn’t really mean it, but it still hurt.  And Mom would have just died on the spot if she knew what she was saying.    

My mom was such a private person and never discussed family matters with her neighbors.  She didn’t want them to know her business.  Yet when she became ill, she told the neighbors she had money hidden in her house.  My sisters and I worried about her safety, and ours.  What if someone tried to break in and steal her money and hurt her in the process?  It was very difficult controlling what Mom said to people.  She was still able to dial up phone numbers and sometimes she would be talking away on the phone while I was doing laundry or preparing supper.  It was always scary when she got on the phone after she and I had a particularly bad afternoon.

There was so much that happened during that period of time when I lived with my mom.  There were those constant complaints from her to drive her car, and the time she found a hidden set of car keys and I had to literally pull the keys from the ignition as she was pulling out of her driveway, the nights I slept in my car in the dead of winter because she threw me out, the day I was scared out of my wits because she locked me out of the house in a terrible thunder storm, and wouldn’t let me back in the house, and the time I ‘lost my marbles’ and threw a glass of water in her face.   Many of our bad days ended with me sitting on her bed before she went to sleep, holding her hand, and praying with her.  Mom turned into an angel then.  She was my mom again, loving and kind.  Those prayers are what saved me. 

I don’t mean to paint an ugly picture.  I’m telling it as it was, from my perspective.  My Mom had her own perspective, too.  It was all mumble-jumbled, but she was feeling many emotions and lots of frustrations, too.  It wasn’t just me and my sisters feeling tormented.  Mom was going through hell inside of her head.  I tried to look at things from her viewpoint because that’s the only way I could try to understand what she was thinking and feeling.  For every feeling I had, my mom had feelings, too.  It’s important to realize that when you are dealing with someone with Alzheimer’s. 

In my next blog I will describe in greater detail some of these memorable moments I mentioned above…the good, the bad, and the ugly.  Thanks for reading, and I hope you will continue to follow along, as I really feel it’s important for my readers to know this part of our journey with Alzheimer’s, before I move on to the next chapter.  I truly feel that what I’m about to tell you will be something others may learn from.  Because I had no idea what was in store for me when I moved into a house where Alzheimer’s lived.  I had to get a grip, and I had to do it fast.  

Monday, February 6, 2012

Blog 10: We Can't Leave Mom Alone, But She Won't Let Us Stay

I got out my calendar of 2009 and saw that it was the month of June that our mom was placed in the hospital with that near death experience that I described in my last post.  The doctor took her off all her medication, and Mom did remarkable.  After a few days, they put her back on her blood pressure and heart pills, and Mom was her spunky self again. You could tell she was just so happy to be alive.  And we were too, let me tell you.  In no time she was ready to bust a move and get out of the hospital.

As I mentioned in my previous post, my sisters and I had a meeting to talk and come to terms with the fact that Mom’s life, and ours, was going to change.  We talked, we cried, we had some disagreements, but we promised we would not put Mom in a nursing home.  She took care of us all our lives and she would do anything for us, so we were going to do anything we could for her. 

The doctor said Mom shouldn't be left alone and we needed to monitor her medication so that episode didn't happen again.  So who was going to stay with her?  Kathy and Lynda had full time jobs, and Renee lived three hours away and worked part time. Annie didn’t have a regular job but did some business buying and selling antiques.  I wasn’t working at the time. It seemed logical that I would be the one to provide the most care for Mom.  But there was a problem…I was moving.

Without going into great detail, a year and a half before Mom’s diagnosis, I had gone through a traumatic experience at my job and ended up leaving it. My seven year relationship with my boyfriend had ended, and I was in the process of making plans to sell my home and move to another state to be closer to my oldest daughter and granddaughter.  She and her husband were also expecting their second child.  My son and his wife were expecting their first baby as well.  They lived in a neighboring state, so it would have put me closer to my immediate family.  I was going to have three grandchildren, and I was so far away.  I wanted to be near them, to be a part of their lives and watch them grow up.  I was at a pivotal point in my life.  The plan was in action.

I had a decision to make.  After much distress and anguish over that decision, I decided to go ahead with my move.  I did not want to leave Mom, I love her so much.  What made me feel better about it was that I had made a decision that I would come back every six weeks, or sooner if needed, to help with Mom and do my part.  I would have never moved if I was her only child.  But I had four sisters, and between the five of us, I was sure we could make it work.  My move was still ten months away.

Now that I explained that, when Mom came home from the hospital she did not want anyone staying with her, just as we had suspected.  Remember, I said our mom was very private.   The first night or two she was ok with having one of her daughters stay with her because she understood the ordeal she went through.   After that, she gave everyone the boot.  She said she can take care of herself.  She made it so difficult for us that there were times she was alone a lot.  We just couldn’t stay at her house.  If one of us was there, and had to leave the house for anything, she wouldn't open the door when we returned.  If we used the house key to get inside, she would let us have it! 

I know it was her disease that caused her personality change, because she was the most loving and caring Mom in the world.  But with this illness, she would literally blow up at us.  She was down right mean at times.  I even tried to tell her the doctor said she has Alzheimer’s and she absolutely refused to believe me.  She said I was crazy, and I was the one who was sick.  To this day I wonder if Mom really believed me and she was too scared to admit it.  Was she trying to protect her daughters?  She always went to the ends of the earth to protect us. 

Our poor Mom…I can imagine how frightening it is to hear you have a degenerative brain disease.  It’s something nobody wants to hear.  She knew the disease all too well, as her husband had passed on from it just four years prior.  She always said that if that ever happened to her, you might as well put her in front of a mac truck because she didn’t want to live that way.

The first couple of months are kind of a blur.  Mom was obstinate.  She was driving her car, and trying to live her life the way she wanted, and not allowing anyone to stay with her. This went on for quite some time.  I was packing up my house and going out of town a lot in search of a new home.  My sisters kept tabs on Mom when I was out of town.  We spoke frequently on the phone about Mom’s comings and goings and wondered what in the heck we were going to do?

My house sold on Sept. 30, 2009.  All of my personal belongings and furniture were put in storage and I moved in with Mom.  My sisters had managed to stay with her off and on prior to that, and I also stayed with Mom when I could.  But when I moved in, Mom had a permanent roommate for the next six months, whether she liked it or not.   I had to leave a couple of times to house hunt, a necessity, and to get a break from the stresses of being a caregiver, another necessity.  Annie stayed with her when I was gone.

My next blog post will describe the ups and downs of those six months of living in a house with Alzheimer's, where Alzheimer's was the ruler.  I know a lot of people have dealt with personality changes in their loved ones with dementia, and have gone through similar struggles, but I don’t know if anyone went through what we endured during that time.