Blog 24: Moving Out

The time had come, I was moving out of Mom’s house.  I was no longer going to be her primary caregiver.  It was such a bittersweet time.  I was feeling so many different emotions that I can’t even put into words.  

We celebrated Easter on Sunday, April 4, 2010, at Mom’s house.  It was to be our last family holiday gathering at our family home, the place we knew for the past 45 years,  the home I so vividly remember moving into when I was only eight years old.  That Easter, we didn’t know it at the time, but we were all in for a rude awakening five months later.  

Five days after Easter, on April 9, 2010, I got up early and finished packing up the few personal belongings I had at Mom’s house.  I had my suitcases packed the day before and my car was loaded up with whatever I could fit in it from my storage unit and still be able to see outside the rear and side windows.  I could sense something in my mom’s face that morning, yet I couldn’t really tell what she was feeling.  Was she glad that I was leaving?  Did she think she was finally going to be living alone, and be rid of me, and have her house and her life to herself again?  Was she really scared that I was leaving?  Was she sad that her oldest daughter was moving half way across the country, and did she fear that I wouldn’t come back?  She understood how far away it was.  

Did she feel bad about all those times she tried to make me leave?  I had flashbacks of all of those times she tried to kick me out and the two times she called the police on me. I remembered how she called Annie to come over because she wanted her there instead of me.  I recalled the time she wouldn’t open the back door during a terrible thunder storm because she didn’t want me inside, and the time I slept in my car on a cold winter night because she wouldn’t let me sleep in the house, and the times she kept me up during the night as I slept on the living room floor, which was my bed for most of the six months I lived there, because she was upset that I was still there.  I wondered if she remembered those times, and I doubted that she did.  It was my memory.   

On that morning, Mom fixed herself a bowl of cereal and she sat in her rocking chair as I loaded my car.  I tried to do it as smoothly and easily as possible so as not to get her agitated and confused.  She watched me and she turned her head to pretend to be occupied when I stepped back into the house.  What was she feeling, really?  

My sister Lynda came over before I left, to stay with Mom for the day.  Annie was to be Mom’s primary caregiver, with the support of my other sisters.  I was hoping they’d get things worked out amongst themselves.  I tried to get all of my sisters to come together for a meeting, to make a schedule. I tried, over and over again.  It was up to Lynda to make it happen.  I was coming back in just six weeks and maybe they will have it worked out by then.

I hugged my mom and kissed her and told her how much I love her and how much I am going to miss her.  I wanted to embrace her and take her all in, just incase, God forbid, something should happen to her when I’m gone.  Her body was thin and I couldn’t hug too tight because of her bad back.  I didn’t want to let her go, but I knew my Mom wasn’t a big hugger.  She didn’t like hairspray in our hair, touching her.  Whether we had hairspray on or not, that was her excuse.  I could feel the bones protruding from her shoulders and back.  She felt warm and alive and she felt like my mom, the person I still adored, the mom I was leaving.  How could I leave???  I’ve never left her, ever!  I told her I will call her often and I will be back very soon.  I had tears in my eyes but I kept myself from breaking down, for Mom’s sake.  I think she did the same for me. Her voice cracked but she avoided eye contact with me. 

I knew my mom wasn’t the same person.   Her dementia changed her.  She was an angry person with dementia, that’s the way the disease affected her.  She never believed there was anything wrong with her, but it was clear to everyone how much she had changed.  This ugly demon entered her body and took over her entire being.  Mom fought it and was able to overcome it many times, and she would show her love and wonderful self, but the demon always lurked.  Mom was still there and I knew it.  NO MATTER WHAT she was my mom and I loved her more than my own life.  I knew my real Mom and she was inside that body that stood before me. 

Lynda and I went outside and we hugged each other goodbye.   I had already given her power of attorney, she was in charge now.  I gave her the journal that I had kept over the past six months.  The journal that told our story, the journal I should have kept because I found out a year later, when I asked her for it, that it ‘got lost in the shuffle’.  

I got in my loaded down car and pulled out of the driveway.  Mom wasn’t at the door to wave me off (was she crying?), but Lynda stood on the porch and waved to me.  She had tears in her eyes.  As soon as I drove up the street the tears and loud crying came.  I couldn’t even see to drive.  I let it all out and I was trembling so hard.  Everything was a blur for the next thirty or so miles.  I cried, and I cried, and I cried.  People at stop lights probably saw me and thought someone died.  And it felt like someone did.

Was I doing the right thing?  Was I making a huge mistake?  I was feeling so guilty.  My mom trusted me to be the one to take care of things in the event she could no longer do so.  She trusted ME, yet I was moving away.   I knew I was the best one for the job.  I knew it.  Yet I tried to convince myself that Lynda could do it, too.  We talked for hours about it and she was ready for the role.  And besides, Mom had appointed her second one in command.  

I was being pulled by my own inner self.  One part of me felt like I needed to stay near Mom and my sisters, and the other part of me needed to be near my kids and grandkids.  I wanted to be a part of my grandchildren’s lives.  I wanted them to know me and I didn’t want to be one of those grandmas who only saw their grandchildren three times a year.  My sisters didn’t make any adjustments to their lives, so why should I?  Was I supposed to give up my life and my dreams, yet they continued with their careers and lives just the same as always?  They had husbands, I didn’t.  Their kids lived in the same town as them, mine didn’t.  I had to make a decision, and I did what I thought was best in the long run.  That decision was made before Mom was even diagnosed with Alzheimer’s.  After her diagnosis, even though I almost put the brakes on my plans, I realized even more how short life is, how little time I could have left before I MIGHT fall victim to Alzheimer’s, too.  After all, my Dad died of LBD and now my Mom has a brain deteriorating illness.  I had made the right decision, I just had a hard time accepting it.  

What helped me through this very difficult decision to follow through with my move was the support I got from my friends and family.  Not my sisters, because they didn’t support me at all in my leaving.  There was no going away party, no extra big hugs, no talk of coming to visit me.  But everyone else reassured me that I have to live my life, too.  That’s what Mom would want for me.  She knows how important grandchildren are and she knew what a loving Mom I was to my kids.  She always told me how proud she was of me, in that I was a good mom and a good person.  She would have never wanted me to put her needs above that of my family.  Yet I still felt guilty.  But I never would have left Mom if I was her only daughter.  She has five daughters, FIVE.  We could all still take care of her.  I was going to come back every six weeks to help.  I was going to do my part in caring for her.  I wasn’t really leaving her!  

It’s weird because my sisters and I were always really close, yet we didn’t really do anything together.  Oh yeah, we would have holidays and little get togethers at Mom’s house, but over the years we kind of stopped doing other things together.  We rarely went shopping, to dinner together, or to a movie.  We didn’t even talk on the phone much.  I was always the one who wanted to do things, to hang out with them, but they really didn’t seem to care if we did anything or not.  I felt that our lives were different as the years went on.  We were close in our hearts but we didn’t hang out like best friends.  I guess I wanted that.  So, I didn’t think they would really care if I was there or not.  I suppose it was just comforting to them to know that I was there, even though we didn’t spend much time together.   They wanted me to take care of things.  I always did before.  

The three day drive was a time of reflection for me.  I was free of being a full time caregiver, I had time to think.  I had time to feel excited about my future.  I was going to be living in a warm, sunny, desert climate, just seven blocks away from my oldest daughter and two granddaughters and a short flight away from my son and grandson.  My youngest daughter was still in the midwest but chances were real good that she would be moving, too. This was going to be a new start for me.  This was something I had never done before.  I had never taken a chance like this before, it was a chance to start a new life.  And sometimes you just have to take chances in life.

But...

Mom was on my mind constantly.  How were my sisters coping?  Not so good.    

Blog 23: I Do Not Have Alzheimer's

I struggled with a previous post because I don’t want to sound like I am picking on any of my sisters.  We all made mistakes when it came to how we communicated with each other in wanting to do what was best for Mom.  When I talk about what happened, I am telling the story as accurately as I possibly can, and the way it appeared through my eyes...what I saw and heard, and how I felt about it.  Of course I don’t know exactly what was going on in my sisters' heads unless they shared that with me. And we did share our thoughts with each other many times.  We didn’t always fight, we had many moments of crying on each other’s shoulder’s, too.  It’s just that as time went on, we began forming sides.  Our loyalties to each other shifted from one sister to the other, and instead of being united, we divided.  Some of us moved to one side, then moved to the other side, and then went back to the first side, and then left both sides, and then were alone.  Many times we were alone.  And Mom would take turns being mad at one of us.  That’s pretty much the way our journey through Mom’s alzheimer’s went.  I had my own beliefs in what I wanted for my mom, and that was for all of us to make adjustments in our lives so we could take care of her.

While I was living with my mom I didn’t see my sisters for long stretches at a time, like ten days in a row. Part of that was because of the animosity that was building between us.  And part of it was because my sisters were not wanting to face Mom’s illness and see it head on, and part of it was they were busy with their own lives.  Once in awhile one of my nieces would come over to help out and my daughter would make the three hour drive to visit.  If I was alone with Mom, I sometimes needed a little break, so I would go out for a jog or a walk when Mom was sleeping or if she was just sitting in her rocker.  She always said to go ahead.  I think she enjoyed the little time alone, too.  I would jog around the block so I could run by the house and check on her.  I had to get out once in awhile, and exercise was important to me. 

In the past Mom liked to have the house to herself.  If her husband went on a golf trip, or was gone for a day, she loved having her alone time.  She liked the quiet, and the fact that she could do whatever she wanted.  She would spend her time cleaning and organizing, painting, sewing, talking to one of her daughters on the phone, or shopping.  With me living with her since her diagnosis with Alzheimer’s, she didn’t have that freedom to do as she pleased.  She wasn’t able to drive anymore because (in her eyes, for some reason), I wouldn’t let her.  Even her doctor refused to tell the driver’s license bureau that she wasn’t fit to drive.  He admitted he didn’t want her on his bad side because she had been his patient for years, and he knew the letter my mom would receive from the DMV would state that he was the one who said she is not fit to drive.  Mom even did a driving test at the hospital, that she failed miserably.  Yet she still felt that she was a good driver and she would comment on that letter, saying that they didn’t know what they were talking about.  It was always an issue with Mom.  She did not feel that she was unfit to drive and she continually wanted to drive her car.


Mom liked to shop at the local Goodwill store and she would buy things she didn't need, like clothes, wall hangings, knick-knacks, and kitchen items.  Everytime she came home she would immediately go downstairs to wash the clothes and wash the other items.  It was just something she enjoyed doing and usually my sister Annie took her there with her.  I remember a couple of times taking Mom there.  She seemed confused and would wander the store just looking at things.  She never wanted to linger and was ready to leave within minutes.  Eventually Mom had more clothes than she knew what to do with.  She never wore them.  Her closets and dresser drawers were stuffed, so she bought this rack to hang clothes on in her room. 

About a month before I moved out of Mom’s house. my daughter flew in to town with her new baby, my granddaughter.  She was only two months old at the time.  My sisters came over at different times to see my daughter and the baby.  We were almost like a normal family then.  The baby brought new life, and lots of smiles and laughter.  What a wonderful distraction from what we were going through.  Mom loved having that little bundle of joy there.  She turned into a loving and nurturing great grandma and wanted to change her, feed her and cuddle with her.  It was so sweet seeing her interact with the baby.  She would lay down on the floor to look into her eyes and talk to her.  I thought Mom would get irritated when the baby cried because people with dementia sometimes don’t like noises,  but she didn’t seem to mind at all.  Instead she was so caring and comforting to the baby.  I took a ton of pictures, and so did my daughter.

Here's Mom with her great granddaughter.

Here I am giving my granddaughter a bath in the kitchen sink.

My mom had a couple of friends who would occasionally call or stop by.  One friend lived in Florida, so she only came by a couple of times.  Mom would talk to her on the phone and she would use that same excited voice in her conversations with her, but a lot of what she said showed her confusion and repetitiveness.  Another long time friend was a man who was married to one of her friends who had passed away, and he would come over every now and then and bring Mom a malt.  She liked visiting with him and I would give them some time alone.  He even took Mom out for dinner once and for a drive another time.  He was really good to her and this was good for my mom.   He would come by once a week to sit with Mom and visit so I could get out and do something for myself.  Once when he left, Mom told me he tried to get into bed with her.  I knew that they had romantic feelings for each other a few years prior, but it was more on his part.  She felt guilty and didn’t want to date a man who was once married to her friend.  After he left that day, he called me and told me what happened.  He said that Mom asked him to get into bed with him.  I don’t really know what is true, but I was leaning towards his side of the story.  In any event, he understood her dementia and there weren’t any problems after that.  This was only the start of Mom’s talk about sex.  

Mom would still often tell me to go back to my house.  I told her I don’t have a house here anymore.  She said she can take care of herself and she didn’t want me there anymore.   She would always ask, “Why are you here?”  I asked my sisters what should I say to her when she asks me?  I didn’t know what to say.  They didn’t know either.  I told her I sold my house and I’m staying with her until my new house is ready, but she didn’t buy it.  I don’t think my mom would have wanted me there for six months even if she was of normal mind.  She liked to be alone.  But I do know that she would have been very loving and understanding of my plight if she didn’t have dementia.  On one of our bad days (and I refer to them as being bad for both of us because if Mom was in a bad mood, it was a bad day for me too) she kept saying she wanted me to go home.  I finally just told her I was there because she has Alzheimer’s.  It KILLED me to tell her that.  I thought maybe then she would understand why I was there, but instead she got very angry and yelled at me and said, “I do not have Alzheimer’s!”  Then she would add, “You do!”

Whenever I needed to run errands or do anything, I had to bring Mom with me.  That is, if a sister wasn’t around to stay with Mom.  Anyone who is dealing with a person with dementia knows that it isn’t always easy.  Remember my post about taking Mom to the doctor’s office?  If it was a short trip, she was usually pretty good.  I would use all kinds of tactics, almost like she was a child, and I would bribe her with a McDonald’s latte.  She didn’t like to sit in the car for very long and she would complain that her back hurt, or she had to go to the bathroom.  I knew Mom always had to go, or she thought she did, so I would make sure she used the bathroom before we left...if I could get her to go that is. 

One day I needed to go to my storage unit which was about a half hour drive from Mom’s house.  All of my personal belongings and furniture were inside that unit and had been for six months.  I had made a couple of trips out there during that time to make sure all was well, and to swap out clothes for the changing season and get a few other things.  Well, this one particular day I had to bring Mom with me.  We had a lot of rain the previous day and I was concerned about my furniture and I wanted to make sure it was dry.  Mom was getting agitated and kept saying she wanted to go home.  She would say, “Where are we going?”  And I would tell her we are going to my storage unit where all of my things are being stored.  She’d ask...how far is it...when are we going to get there...I want to go home.  


By the time we got there she was in a pretty bad mood.  I couldn’t get the lock on the door to work because it was jammed.  Mom kept saying to hurry up.  The wind was blowing really, really hard, and I was freezing.  It took awhile to get the lock opened, and I lifted the large door to expose the contents.  There was my life inside.  All of my clothes and personal items, photo albums, furniture, my kids’ things I saved over the years...everything.  I saw water on the floor and my expensive mattress was soaking it up.  The rain had gotten in and several pieces of furniture were sitting in water.  I called the manager of the storage unit and he sent a couple of guys out to help me get the mattress and a couple of pieces of furniture up on pallets.  While we were waiting for them to arrive my mom was beside herself with frustration and kept saying she wanted to go and why are we here.  She didn’t understand what was going on.  I started to cry and I said, “Mom, do you want to know where my house is?   It’s right here!  Here’s my house Mom!”  I told her that these are my things, my furniture and clothes, and everything is getting wet.  I asked her to please be patient and we will go home as soon as we can.  I couldn’t get it taken care of fast enough, but eventually the men arrived and we fixed everything as good as we could.  When we left the parking lot Mom calmed down, and my heart went back to beating normally again.  I was feeling so sad.  I was drained, and all I wanted to do was curl up in bed.

In my next post I will write about me moving out of Mom's house.  What an emotional time it was.  Please stay tuned.

Blog 22: My Mom in Her Younger Years

I felt like my last post was a little heavy on the emotion and frustration, so I wanted to change it up a bit and lighten the mood by posting some pictures of my wonderful mom when she was younger.  She is such a beautiful person inside and out and her beauty remains today.  She may be older and suffering from dementia, which has changed her somewhat, but she is still beautiful!  Her voice and her laugh and some of her mannerisms are exactly the same as they've always been.  I love her so much.

Here's a picture of my grandma holding my mom. My grandma was a short little Irish woman who stood about 4'10" tall.  Even with her short stature she carried herself proud, and was a strong woman, who spent most of her life working on the farm and caring for her family. My grandma and grandpa were both such amazing people, who were always there for me and my family.  They are both long gone, but I still think about them every single day.  It was because of them that my mom was the loving and nurturing mom that she was.  She had a great upbringing and she was close to her parents.  I just had a flashback of my mom talking on the phone to her mom.  They talked every single day.  And then when I moved out on my own, I talked to my grandma every day until her cancer got so bad and she passed on.  That was in 1979, and I can still recall the last time she called me.  I was getting ready to have my second child, and the last call I got from her was the day my son was born.  She passed on to heaven three months later.  After all these years it still makes me sad.

I remember a story my mom told me about when she was a little girl, she was going to pick up a stick and scare her mom with it, pretending it was a snake.  When she reached down to pick it up she realized the stick was actually a real snake.  She went screaming up to the house and into her mom's arms.  I remember she was always so scared of snakes.  Mice, too.  When we were kids a mouse had gotten into the house.  We were sitting at the dining room table eating supper when I saw a mouse quickly crawl up the curtain behind my mom.  I said, "There's a mouse behind you!"  My mom literally climbed on top of the table and screamed while all of us girls laughed.  That mouse stuck around in the house for awhile and part of that was because of me.  We had a babysitter one night and she trapped the mouse under a glass bowl under the sink.  She walked away and I let the mouse out.  I felt sorry for it.  The babysitter told my mom what I did and I don't remember her getting that mad at me.  She asked me why I did that, and I said the mouse was running in circles and crying.  Mom knew I was a huge animal lover.  I used to have pet mice (in the gargage of course) hamsters, rabbits, turtles, fish, frogs, even spiders (ewe), and cats and dogs.  A day or two later the mouse got snapped by the mousetrap, and his fun with torturing my mom was over. 

This is a picture of my mom around the age of six, I think.  I can definitely see a family resemblance to my sisters, me, and even my kids in this picture.  She had gorgeous blue eyes.

Here's my mom's high school picture.  She left the one-room schoolhouse in the country and attended a large high school in town.  She loved it there and she got a part time job after school, working for Woolworth's.  She lost touch over the years with her best friend from school, and we found out many years later that her friend's grandson was in my daughter's class at school.  We thought that was really cool when we realized the connection, and Mom looked her up and gave her a call.

I think my mom was 18 years old in this picture.  It was taken at the family farm.  She used to love to dance and she said her uncle used to drive her into town so she could go dancing with her friends.  That is where she met my dad and a year later they were married.

And then I came along.  Here's Mom holding me.  I'm the oldest daughter and within eight years my mom and dad had four more daughters.  My parents divorced when I was eleven and it was just Mom and us girls.  We had visits with our dad but it was Mom who took care of us. Life was wonderful with Mom even though we had some hard times for lack of money.  We had an abundance of love and respect and appreciation for each other. 

Blog 21: We Were Drowning In Our Own Ocean

Things were really starting to get bad between me and my sisters.  As I said in an earlier post, we had only one family meeting between us and that was right after getting Mom’s diagnosis.   Never again did we all sit down to discuss our mom’s illness as a family, to talk about what we were doing that’s wrong, what we were doing that’s right, what can we do to make it better, and what can we do to help each other.  We needed to stick together and support each other, but were drowning in our own ocean. 

I had the power of attorney, but I had no power in making my sisters come together during this crisis.  I had no power to do what I wanted to do for Mom, at least I didn't think I did, because I wanted decisions to be made as a family.  I was working with the visiting nurses until Mom’s insurance wouldn’t pay for it anymore and Mom didn’t want them there anyway, and they had done all that they could at that point.  And I was going to be moving out of state soon and I wanted to get everything in order before I left.

I told each of my sisters that I have a plan.  I wanted to set up a schedule for mom’s care.  I wanted to set up adult day care for mom at a place just a mile down the road, where she could go when my sisters were at work. There was room for her and it was inexpensive.  I asked my sisters to help me put together a schedule of when they can be there with Mom.  Annie had the most freedom and she was able and willing to do the bulk of the responsibility in staying with Mom during the week, as long as she could go home on the weekends.  All we needed was someone to cover the weekends and give Annie a day or night off during the week so she could attend to her antique business.  I said we can hire someone to come in at different times to relieve my sisters and possibly even cover an entire weekend.  I had it all planned.  I made phone calls and did the preliminary ground work.  It was going to be costly to hire outside care but considering the alternative, which was nursing home care, it was going to save a lot of money.  

The problem was, nobody would come together for a meeting.  I heard excuses like...‘I can’t be there’, ’why do it, it’s not going to work’, and ‘she’s not going to agree with me so why bother’, and ‘it’s only going to turn into a big fight’, and ‘I’m mad at her so I don’t want to talk to her (meaning a sister).‘  It got to the point where I decided they are either going to sink or swim, because when I’m gone, they need to figure it out.  I had already told them my end of the bargain.  I was going to come home every six weeks and stay with Mom for two weeks at a time, to first and foremost, spend time with Mom, but also to give them a break.  That was going to cost me a lot of money in airfare but that was my choice.  In another post I will tell you that I held up my end of the deal. 

My sisters and I all knew we needed to do something but everyone had their own ideas and I think they were all hoping the other one would take care of things.  I was moving, and just waiting for the phone call from my realtor saying when the closing was approved on the house I was purchasing out of state.  I don’t think my sisters actually thought I was going to leave, because when that call did come through, and I told them I’m leaving in two weeks, Lynda said, “I really didn’t think you were going to leave us.” 

Lynda and I had already discussed that I would give her power of attorney with the power of attorney for health care decisions, too.  She was the alternate power of attorney, and she is the second oldest daughter.  This irritated Renee, the youngest one.  She was always trying to tell me and everyone else what needed to be done.  She didn’t care what anyone else said, because she felt that she was the only one who knew best.  Yet she was the one who hadn’t lived near us since college.  She only saw Mom maybe three times a year, whereas the rest of us were with Mom about three times a week, all through our adult lives.  She only came to see Mom once every four or five weeks after she became ill, and yet she wanted to tell us all what we had to do.  WE knew her better than she did.  We saw her during her illness, and tended to her daily needs.  Of course she loved her as much as we did, but she only wanted things done her way, which was to put Mom away in a home.  As you can tell, I’m getting upset just writing about it.  There will be much more on that later.  

The bottom line was this.  We promised our Mom we would not put her in a nursing home.  We told each other that we would not do that to Mom.  She took care of us and did anything for us in times of need and sickness, and we were going to do anything we could for her.  She’s our Mom and we love her more than life itself.  We also said to each other that we knew the time would come when Mom won’t be able to feed herself, or dress herself, be able to walk, or even know who we are.  That would be when we may have to put her in a home if it’s too difficult to care for her.  We understood that was a possibility, but that day was long off.  More will come on this later, too.

As I said, everyone had strong feelings about what to do and we could not come together as a family and compromise, and work it out.  It’s really sad when I look back and see where we all went wrong.  That was back in the spring of 2010.  

  

Unfortunately, Renee was urging me to find a nursing home for Mom before I moved.  I told her that is not necessary.  I was living with Mom, I knew what she was like, and she was not by any means ready for nursing home care.  Assisted living maybe, but why do that?  She had a house that was paid for and her money would run out quick if we placed her now.   She could live for years and how would we pay for nursing home care then?  It was not even an option I wanted to entertain because I didn’t want my Mom living in a state run facility when the money runs out.  Mom had five daughters, there wasn’t any reason why we couldn’t take care of her.  Renee became increasingly difficult in her demands.  She said we can’t come together to take care of Mom, it’s not working.  She said Annie is not the one to do it.  (Remember I said that, and you will know why later.) I was so frustrated because nobody would communicate effectively.  It was always a big fight.  

Renee lived three hours away and did not have a regular 9 to 5 job and was here maybe once every 5 weeks, to spend usually one night over the weekend.  That was her contribution.  Her only other contribution was trying to tell everyone else what should be done.  She had a husband and two school-aged daughters and a part time job.  I understand her responsibilities to her family and her work, however, she was making strides to advance in her career at the time, too.  She didn’t want to give that up, yet she expected others to do more, give up their time, work less, not move, and she just wanted Mom placed, period.  

Kathy had a full time job and would trade off on weekends with the rest of us to care for Mom.  She would occasionally come one night during the week to visit Mom.  But she pretty much remained neutral in whatever decisions were made.  She didn’t offer much input and she didn’t care one way or another what was done.  She did not like confrontation. And she was one of the avoiders for a meeting.  She wasn’t able to handle Mom’s moods very well and would say, “I don’t know how you do it, I wouldn’t be able to handle that.”  If Mom got angry with her, she wasn’t as strong as I was in handling it.  But Mom rarely got angry with her...which was good. 

Lynda was to carry on the power of attorney after I moved, and she was feeling pressured by Renee to find a nursing home, too.  Lynda is a very loving person, with a soft heart, but according to Renee, she didn’t move quick enough and was not a suitable POA because she ‘didn’t get the job done’.   Lynda didn’t like that Renee was being so bossy and not understanding that she couldn’t be on the phone taking care of everything while she was at work.  Yet Renee didn’t want to make any phone calls because she didn’t have POA. 

This was the mess we were in back in the spring of 2010.  All we needed was a plan.  Instead we lost our ability to communicate effectively.  Had we started off keeping the communication going, not forcing things on each other, compromising, helping, listening, and understanding each others feelings of anger and hurt, and loving each other unconditionally the way we always used to, then things would be a lot better today.  

Blog 20: If Only For Moments

One of the hardest things I had to do with Mom was taking her out of the house for her doctor appointments.  She always wanted to go to her regular physician, sometimes for a needed prescription refill and other times for some help with how she was feeling, I guess.  We would get to the the doctor's office and she'd sit in the waiting room impatiently, wondering why I brought her there in the first place.  We went many times, and sometimes it was a good experience, but there were times I wanted to run far, far away.

One day we sat in the waiting room and we had a particularly long wait.  This irritated Mom to no end.  She kept saying, "What's taking so long!  I'm going back there and finding the doctor," as she would head towards the door to the examination rooms.  It didn't matter who was sitting nearby.  She was totally in her own world, not caring what she said or who was listening.  The front desk people could see the anguish on my face and finally when she wouldn't leave them alone either, they put her in an exam room to wait, so she wouldn't keep disturbing the other patients in the waiting room.

We got to the exam room, which by the way, Mom usually let me come back there with her.  The nurse told us the doctor was running behind but should be in to see Mom in a short while.  Mom was very impatient.  She kept opening the door and walking down the hallway to get the doctor.  I told her he would be in the room shortly, but she could not wait.  The nurse would come to the room or stop mom in the hallway and tell her to wait in the room for the doctor.  Mom would say, "How much longer?  I can't wait."  Then she would pace the room and complain very loudly.  If I said, "Mom, please keep your voice down, there's other patients in those rooms."  She would glare at me and mimic what I was saying.  She'd say she was getting out of there, this is ridiculous.  I was so embarrassed.  She kept saying things like, "Why am I here anyway?  Let's go and come back later."

I decided to walk out of the room in hopes that she would calm down, that maybe I was irritating her by just being there.  She kept going out to the hallway and yelling at me and complaining that this was taking too long and she's not waiting anymore.  I wondered why my mom was the only mom in the world who acted this way.  That's how I felt.  If the nurse wouldn't have kept telling me it would only be a few more minutes, I would have just taken Mom home.

Then I sort of lost it, as I hate to admit, I did from time to time, and I shut the door on Mom and held it shut.  She tried to open it, and began pounding on the door, saying "Let me out!"   This went on for about a minute, until I had to let go of the door knob because she was being too loud.  She was so mad at me.  I told her the door locked itself but I don't think she bought it.  The doctor finally came, not her doctor, but another one.  Mom told that doctor that I was sick.  She said, "She's the one who needs help here, not me!" She said I locked her in the room.   At that point I was starting to believe she was right.  I needed help alright, help in dealing with her.  The doctor just looked at me and then at her and then did her best to talk Mom out of her anxiety.  She succeeded and Mom got her medication refilled and we were on our way.

Walking out the door of the doctor's office, Mom immediately, and I mean immediately, went into a sweet, loving demeanor.  She was talking normally, being her nice self again.  This happened almost every time we went to the doctor, whether it was the eye doctor or her family doctor.

We had a similar experience once at the eye doctor clinic.  Mom was just incapable of waiting.  She would get very impatient and cause a scene, pacing the halls, searching for the doctor or nurse to scold after she got through telling me off.  I remember observing other elderly patients walking into the clinic, coming by themselves, laughing and carrying on normal conversations with the staff.  It wasn't fair.  Why did my mom have to get this disease at such a young age?  She was only 73 years old. She no longer cared about her hair or her appearance, like she used to.  Everything about her was falling apart.

Another time I had to take Mom to my doctor's office because I had symptoms of a bladder infection.  All I had to do was give a urine sample and it should have only taken a brief run in and run out visit.  Mom didn't want to come in so I let her sit in the car and I watched her from the waiting room.  I figured it'd be better because of our last experience at her doctor's office.  Unfortunately, it didn't turn out to be a run in and run out visit.  Mom got out of the car and came inside and let me know of her displeasure.  She said that she wanted to go now, and it was taking too long.  She knew why I needed to go there.  I tried to get her to sit next to me and distract her with a funny comment or a magazine article (which she had no interest in).  She threatened to walk home and I had to stop her at the door.

Another woman and her mom, about our ages, were sitting across from us, quietly observing, but trying not to stare.  Mom told them she always comes to the doctor with me and I never go to the doctor and wait for her.   Really, I thought!  The younger woman said, "That is so nice that you came with your daughter.  I'm sure she loves you and appreciates what you do for her."  Mom said something like, she never does anything for me. Mom kept grunting and moaning and I went to the front desk lady and said, "How much longer?  My mom has Alzheimer's and it's hard for her to wait, and I don't know what to do."  Even the nurses and doctors in the back could hear Mom.  I saw them looking.

FINALLY, after I was about ready to leave, they called me back.  I told the front desk person to please let me know if Mom gets out of hand.  She said not to worry, she will keep watch on her.  I went to the exam room and I could hear Mom complain about me in the waiting room.  She kept saying I do nothing for her and she doesn't know why she is doing this for me.  She said I take advantage of her.  And she continually asked why this was taking so long?

It was so unfair of me to put Mom through this and to put the office staff through this, and for me to go through this.  The nurse practitioner came in and I told her I was so sorry about bringing my mom there.  She looked at me sympathetically and before I could say another word, I just lost it.  I cried and cried and could not stop.  I felt like I was a terrible caregiver and I was doing things all wrong, according to my mom.  I don't remember what the doctor said, I just remember she said something about caring for an elderly parent being very stressful and it may have caused my infection, as it can cause many other health problems for caregivers.  She gave me a prescription for the bladder infection, patted me on the back, and I walked out to the lobby to get Mom out of there.

Once again, just as soon as my hands opened the door to the outside air, Mom instantaneously transformed into a sweet Mom again.  She said, "Are you ok, Lizzie?"  I said I have an infection and I have to go get a prescription.  She said, "Oh, I'm sorry, I know how that feels.  I remember having that one time.  I hope you feel better soon.  I'm glad you got something for it."  Then she started making small talk about the weather and other things.  I just couldn't believe how she changed like that.  I knew this disease was evil, dreadful, and a stealer of my Mom, but I also realized it has it's moments of allowing a person to come back...if only for moments.  And that's what us caregivers live for.

Blog 19: Life Does Go On and New Life Begins

While I was living with Mom, my regular life did go on. I felt like I had two lives...that as caregiver, and that as a normal person, who enjoyed life outside of caring for my mom. I am kind of a health nut and I've always worked out at a gym, but since living with Mom I had to use other means to stay fit. I bought some weights, and exercise band and ball, and went out for jogs when one of my sisters would come by to visit Mom.  I even got Mom to do some of the exercises with me.  I also tried to see my kids when I could, have dinner with a friend or two, or go out to a movie or dancing once in a great while.  I felt that it was a necessary ingredient for a caregiver to try to maintain some sense of normalcy. You can't give up everything or you will get lost in the abyss of caring for a person with dementia, and that's not a healthy place to be. It's important to have some time to yourself. As long as I had sisters who could come to sit with Mom, I was able to get out once in a while. I do remember once or twice I didn't see a single family member for 12 or 13 days in a row. I will begin the tough part of how my sisters and I were managing as sisters in an upcoming post.

So, on to the other part of my life. My son and his wife were expecting their first child.  I planned to be there for the birth but he came a week early and I wasn't able to get there until three days later.  They live in California.  I spent three weeks with them, bonding with my precious grandson and helping my son and daughter-in-law in the adjustment to parenthood.  My sister Annie stayed with Mom, with the help of my sisters Lynda and Kathy. 

Then two months later, my oldest daughter and her husband were expecting the birth of their second child.  They lived in the southwest, far from our home in the midwest, and it was the place I was planning to move to.   I wanted to be near my kids and grandkids...but that story will come later.  I had a plane ticket bought to be there for the birth.  I was there when she blessed me with my first grandchild a year and a half prior, and that was the most amazing experience, and I wanted to be there for the second one, too.  I was to arrive two weeks before her due date, knowing the second one often comes early, and knowing how I missed my grandson's birth, I didn't want to miss seeing another grandchild coming into the world.  My sisters were going to take care of Mom when I was gone, and I planned to be gone for three weeks this time, too.

I got a phone call the day before I was expected to leave, and it was my youngest daughter, saying she just broke her arm in a snowboarding accident.  She lived three hours away.  She was in a lot of pain and was scared and crying.  I wanted to be with her but I had no one to cover for me and be with Mom that day.  I couldn't leave Mom alone.  I remember how stressed I was and didn't know what to do.  Mom was being difficult with me because she sensed my stress and in turn became very anxious and angry with me.  My daughter's boyfriend was with my daughter and he promised to keep me informed as to what was happening, every step of the way.  This also aggravated my mom because that meant many phone calls that took me away from giving her the attention she very much needed at that time.  The emergency room doctor was able to move the bone back into positon but she wasn't able to have it operated on until the next day, and that was my scheduled flight day.

My daughter's surgery was scheduled for early in the morning and I knew if I cancelled my flight and rebooked it a day or two later it would cost me a lot more money, money I didn't have, and I could possibly miss the birth of my grandchild.  I felt confident that my daughter was in good hands and she was going to be well taken care of.  Her boyfriend is an angel and kept me abreast as to every move that was being made.  I spoke to my daughter before her surgery and to her doctor.  I felt bad that I wasn't there.  I felt horrible about that.  Then, as if that wasn't enough, my pregant daughter called me a few minutes later and said that she felt like she was in labor.  I couldn't believe it!  I was going to miss that birth, too, after all of that.  I actually told my daughter to 'hold on' and not have that baby until I get there!  Like that was going to happen! 

So, I had one daughter on the operating room table and another on the way to the hospital to give birth.  And, my Mom was getting upset that I was on the phone so much that morning.  I tried to explain to her what was going on but she didn't understand.  She kept interrupting me and yelling at me to get off the phone when I was talking to the doctor about my daughter's surgery.  She even tried to hang up the phone on me.  I told the doctor I was sorry but my mom has Alzheimer's and she doesn't understand.  He was very understanding and he could clearly sense that I was stressed and emotional beyond belief.  I tried to give Mom the attention she was demanding, but I was also dealing with some huge things.

In the midst of all of this, I could feel my blood pressure skyrocketing.  I was trying to get my things gathered up for my flight, take care of Mom's needs, and deal with the necessary phone calls.  My sister who was supposed to be there to cover for me didn't show up when she said she would and I was afraid I was going to miss my flight.  I needed to get to the airport. She finally came and I was on my way and took a few deep breaths in the car to get a grip.  I seriously don't even remember who took me to the airport!  On the way there I spoke to my son-in-law, who said they were on their way to the hospital since my daughter was having regular contractions, and I could hear her moaning in pain.

Even with all of that going on I was feeling very sad for my mom. I knew that normally, in her healthy state of mind, she would have been very understanding and very sympathetic to her granddaughters. She would have been so happy to hear of her granddaughter going into labor and anticipating a brand new great grandchild. I could imagine her face, smiling from ear to ear with excitement! And she would have also been so worried and concerned for her other granddaughter who had a broken arm and had to undergo surgery. I felt like my mom got robbed out of feeling the proper emotions and for experiencing something with me, her oldest daughter, whom I know she loved dearly. Mom was living in a new world of tangled emotions, often inappropriately expressed, and all caused by the destruction of brain cells. Also, I was robbed from having my mom to lean on, and to have her to talk to and give me advice, and to laugh with me and cry with me, and we could hug each other and be like a normal mother and daughter. I'm remembering how I felt at that time, in wanting my mom to feel the way I did, the way she used to.

I boarded my plane and had a connecting flight in Chicago, which was less than an hour flight away.  As soon as the plane landed I turned on my phone and listened to a message from my daughter.  She already had the baby!  She said, "She's here!  She was born just a few minutes ago..."  I missed the birth, but I made it there five hours after she was born.  I held my new granddaughter and wiped the tears of happiness off my eyes.

Three weeks later I came back to Mom's house and Mom and I continued on our journey.   All was well in my kids' lives.  I had two more beautiful healthy grandchildren in a relatively short period of time, my daughter's broken arm was on the mend, and I had an offer on a house. It was a short sale deal though, and it would be months before the closing would take place.  I had more time to spend with Mom...and time for those thoughts of guilt for leaving Mom to creep in.

Blog 18: The Last of Everything

While I was living with Mom, I didn't realize that the Thanksgiving and Christmas of 2009, and her 74th birthday and Easter of 2010, would be the last ones spent in her home.  I didn't know how quickly things were going to change. 

For the holidays, the house was always so full of people, with all of Mom's daughters and their families.  Not everyone was there that last Christmas, as some of my nieces and nephews weren't there, and two of my kids and their families were unable to make it back.  My son and daugher-in-law had just had a baby and my oldest daughter and her husband were expecting their second child soon.  They all live quite a distance away.  I will talk about that in my next post.

This is Mom sitting in her rocking chair, admiring her tree, while we wait for the family to arrive on Christmas day. This image of her is embedded in my memory.  

The house was busting at the seams with the ones who were there.  Mom's house was small, and with the births of our kids' kids, the family was growing by leaps and bounds.  There was never a dull moment...or an empty seat to sit in. As soon as someone got out of their seat, it was taken, unless you could bribe one of the kids to sit in it and hold it for you.  

There was something that felt different about this Christmas.  Tension was mounting between me and my sisters as the stress of Mom's alzheimer's was getting to us. We tried to go about the holiday as usual and we opened presents and ate a nice dinner.  Like all the other holidays, the women always enjoyed sitting or standing around the dining room table, while the men sat in the living room watching sports on the television.  Ocassionally we would join the men or they would come to the dining room and join us.  The kids had fun playing with their cousins, and all in all, it was a pretty nice Christmas.  With all the voices and commotion, it could get pretty noisy.

My sisters and I were aware that Mom couldn't handle that much activity and noise for very long, so we made sure everyone cleared out as soon as Mom showed some signs that she'd had enough.  Normally Mom did very well, and enjoyed the company. But with her dementia, understandably, it was hard for her with all of the activity and stimulation.

After everyone left that Christmas day, I cleaned up the house.  Mom went to bed and I sat with her on the edge of her bed and we said our nightly prayer together.  Then I went to the living room and sat down and looked at the tree and wondered if we would have another Christmas in our family home.  I was hoping we would.  I thought of those early Christmases when we were kids and how Mom made them so magical.  If you read Blog 2, I spoke of those Christmases when we were kids.   

When Easter came, everyone came over and we spent much of our time outside.  Our family always enjoyed hiding Easter eggs for the kids and then the kids would hide them for the adults to find.  The adults were so competitive on those egg hunts and the kids knew it and tried to find the most unusual hiding spots.  We also had a hula hoop contest and my 13 year old neice and I could hula forever.  I was still able to hula with three hoops, probably could have done more if we had them.  It was funny seeing my great neices and nephews try to figure out how to do it.  We couldn't get Mom on the hula hoop.

We sat with Mom on her back patio and took turns rocking with her on her swing.  Mom was wrapped in a blanket and she seemed to enjoy the day very much.  It was our last Easter together in Mom's house, but we didn't know it at the time.  I wonder if we knew, how would things have been different?  Would we have done anything differently?

I took pictures on those special days.  I was always the one to have my camera on hand to capture those candid shots.  There were the typical complaints when I tried to gather everyone up for a group picture.  It was usually a big struggle to get them to cooperate.  Because of my efforts, we now have photos of Mom and us girls together.  I couldn't help it, I've always been a picture person and I believe in capturing memories in photos.   I told my sisters they will thank me for it someday...and I think the time has come that they wish they would have appreciated it more than they did.  It's a good thing I took those pictures then because we will probably never have another family group picture taken again.

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. 

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.

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.