Blog 39: Talking On The Phone Can Be Challenging

When I called for my mom at the nursing home, one of the staff went to Mom's room and told her, "Your daughter is on the phone, Bonne."  Mom got confused when she tried to give her the phone, as she sometimes does.  I could hear Mom close to the phone so I said, "Hi Mom, this is Lizzie!"  Then she said, "Hi", and I had her attention.  It's almost like a baby when you try to give it a bottle and the baby fusses and squirms and pulls away from the bottle because it doesn't know it's right there. That's kind of what it's like.  Mom takes the phone but she doesn't know what it's for and why she has it in her hands, but as soon as she hears her daughter's voice, she knows what she's supposed to do.  It's like she's hungry for attention, and when she hears a familiar voice, she responds.

I also know that I need to tell my mom I love her right away because I just don't know when she is going to leave the conversation for lack of remembering she was talking on the phone.  She will either set the phone down and walk out of the room, or take it with her, but not realize she still has the phone in her hands and her daughter is waiting on the other side, calling out her name.  I think she may even fall asleep sometimes.  At least if I get a chance to tell my mom that I love her and I miss her, and she says it back to me, then I can smile and feel that our conversation was good, no matter what happens after that.

During this conversation Mom said the usual things.  When are you coming here, is (?) coming with you, I want to get out of here, and so on.  I reminded her that my daughter and four year old granddaughter are coming with me to see her.  Mom sounds like a loving Nana when she hears about her great grandchildren.  That is one thing that is evident.  She still shows her nurturing side when it comes to small children.  I can't wait to see my granddaughter sit on my mom's lap because I know it is going to make my mom beam, when not much else does these days.

Mom said someone put something on her shelf and she said she was going to turn it on.  I could hear IT making noises, rather loudly, but I couldn't make out what IT was saying and I didn't know what IT was.  When the sounds stopped, Mom was not there.  I called out for her and she said, "Lizzie, where are you?  I can't hear you."  I told her I am still on the phone and for her to put the phone by her ear.  After a few attempts to get her to do so, she finally did, and we were back in business.  After a couple of minutes she turned on another toy she had that plays a tune.  It's a monkey and he sings a song.  Before that was finished playing she turned on her music box that I got her and played the song in it's entirety.  I heard every last note of You Light Up My Life as it slowed down and came to an end.  Afterwards Mom was gone.  Either she fell asleep or she walked out of the room.  I patiently waited for her to come back to me, and occasionally called out for her.  It was silent in her room until I heard her door open, and then the line went dead.   This is the way our phone conversations go sometimes.

Blog 38: I Miss Mom's Loving Instructions

I recently returned from a trip to Alaska.  Usually before I go on vacation my mom would give me loving instructions to be safe, take lots of pictures, have lots of fun, and to call her when I get there so she knows I made it there safely.  Of course I don't get those motherly instructions anymore, she is not capable because she doesn't understand.

When I told her I was going to Alaska, she said she wants to go there.  Then she forgot within minutes.  I knew that, but I still wanted to tell her I was going, just for the slim possibility that she might tell me to be careful, or something like that.  It made me sad.  I wished she could have gone on this trip.  Even though my mom was never really a traveler, she would have really enjoyed all the mountains.  She loves mountains and she loved to paint them.  I was feeling sad that my mom's world is never going to be outside of a nursing home.

I thought of buying her a souvenir, like I used to do.  But where would she put it?  She doesn't have much space in her little room.  Besides, she would forget about who gave it to her and why it was there anyway.

The night I left Anchorage I was thinking about a lot of the troubles in my family, and my life, in general.  This was one of those times, like many times, that I was thinking of Mom. The plane was taxying down the runway and I sensed a strong wind outside as the wing bounced up and down a little.  There was a brief second where it took my breath away, and I started feeling emotional that my Mom didn't give me a 'have a safe flight and call me when you return' message.  I was really feeling sorry for myself that nobody did.  I attributed my emotional feelings partially to being so fatigued from the busy travel week, from the ending of a vacation of a lifetime, and the let down of going home and facing the reality of my life (with the situation of my mom and my sisters, mainly), and facing an all-night flight, where I was sure I wasn't going to be able to sleep.  Which I didn't, by the way.

When I returned home I went straight to bed, and when I awoke I had a voice message from my sister to call her.  She told me about her visit with Mom a couple of days ago. She said she had a nice time with her, but she also told me something she said she struggled about telling me, but she knew I'd be there shortly and I would see it myself.  My mom had apparently scratched out my face in a couple of pictures hanging on her wall, and ripped one picture in half.  Annie wasn't sure Mom had actually done it because she told Annie she didn't know who did.  But Annie's daughter was there earlier in the week and she said my mom told her she did it because I took her accordion and won't give it back.  Annie said she kept telling her that too.  Annie reassured her that I did not have her accordion.  Renee has it, and up until this past week, Mom knew that.

Mom has been talking about that accordion, as many Alzheimer's patients do about things they get fixated on.  But she always knew Renee had it and kept saying Renee needs to give it back.  Now, she thinks I have it.  I wonder who planted that seed?  Maybe nobody did, maybe it's just her illness causing the confusion.  I wish Renee would just put it in her room so it brings Mom some comfort.  It's obviously a big deal to her, and it's a small matter to just place it on her shelf so she can look at it.

My feelings were hurt, but that's nothing new.  I usually bounce back though and don't let it get me down for too long.  I have a life to live and that's what my mom would tell me if she could.  She would tell me to be happy. So that is what I'm trying to do.  This is a long, hard road, and it's not easy, but I'm trying to be strong.

Blog 37: Oh Mom, I Need You!

There are times in a woman’s life when she just needs her mom.   More and more, I have come to realize just how much she has always been there for me and how much I have always counted on that.  It’s always been a sense of comfort knowing she was around.  I could call her at any time and she would be there with a listening ear.  Always soothing any discomfort I had, offering advice that only a mother can give, and letting me know just how much she loved me.  Just hearing her voice made me feel so good.  A mother’s love is unconditional.  It’s the kind of love that can’t even be put into words.  It’s the best love there is.

This is one of the last gifts my mom gave me.  She bought one of these for all of her daughters for Mother's Day in 2007.

Mom was there for me when I had my three children, and the pride she showed me was priceless; she raced me to the hospital when I was having a kidney stone attack, disregarding the speed limits; she tenderly rubbed Vicks VapoRub on me when I was a teenager and very sick with the flu, and I realized just how worried she was when she called my grandparents to come stay with me when she had to go to work; she mailed a video camera to me when I was living in Germany so my dad could record my high school graduation because she couldn’t afford a ticket to fly over there.  (Back in the 70’s, I’m sure that was a pretty expensive piece of equipment).  After returning to the states, my mom used my video camera to record me in a fashion show, only to realize she forgot to put the tape in the camera!  It was me offering comfort to her then, because she was so upset.

My mom put up with me when I screamed and cried at the doctor’s/dentist office when I was a kid.  I’m sure I embarrassed her many times, especially the time I ran down the hall from the nurse as she was holding a needle in her hands, ready to poke me with it.  Mom was right behind the nurse, trying to get me to stop running away because I was embarrassing myself (and her), and I was going to get the shot whether I wanted it or not.   Mom told me that my younger sister had the shot and she didn’t even cry. 

Mom was there for my band concerts, church plays, and high school minstrel shows.  I remember her coming to watch my first grade Christmas program.  She was standing there, all beautiful, with a proud mom’s love written all over her face.  We lined up on the stairs in the hallway and I was in the first row because I was so little.  That children’s program stands out in my memory because I couldn’t snap my fingers when we sang Up on the Housetop, click, click, click!  So the teacher told me to just hold my hands down by my side, instead of telling me to pretend.  Because I did that, instead of raising my hands up to click, click, click like everyone else did, it drew more attention to me and it seemed like everyone was staring at me.  I was so embarrassed, and apparently that’s why I never forgot it.  My mom tried to make me feel better by telling me everyone stared at me because I was the cutest one.  Funny how little things like that, which seemed so big at the time, can make you hold on to a memory.

I thank God that my mom is still here.  She is different now that dementia has taken over her brain, her memory is pretty sparse, and she isn’t the same as before.  She doesn’t seem to remember anything about my childhood, or even hers anymore.  She can’t be there for me like she used to.  But she is always going to be my mom no matter what. She is still here and I can still hear her voice, that voice that I love so much.  I still need her, and any way I can get her, I am grateful for.  

I was thinking the other day about what would my mom say to me, to my sisters, about what we are going through with her illness.  What advice would she give me (us)?  She's always been there for us before.  We need to figure it out on our own now.  I know we have to take what we learned from her and be there for each other, like she was for us, and like we used to be with each other.  I know that.  Oh Mom, I need you to show me how, once more.  I can't seem to do anything right when it comes to this.  

Blog 36: Communication, Prayers, and Forgiveness

Communication with my sisters has had its ups and downs.  We’ve all been going through a great deal of suffering about our Mom’s illness, and facing the thought of losing her someday has been almost unbearable.  That in itself has changed the course of our lives.

I spoke to Kathy the other night about our mom and we talked about how we wish us sisters could be close again.  I am the only sister who talks to Annie and I have been trying to get them all to reach out to each other.  Annie is struggling with the fact that Renee placed Mom in a home and Lynda and Kathy didn’t do anything to stop her.  I told Kathy, Lynda has been really distant with me and I don’t understand why, unless Renee has something to do with it.  About the only communication I get from Lynda is an occasional text, telling me she loves me.  I miss talking to her.  It would be so nice to have all of my sisters back.  There's just so much drama!

On the subject of Mom being in a nursing home, Kathy told me Mom needed to be placed there.  I told her I disagree.  I said that Mom went into the home only a year after her diagnosis, after we promised her we wouldn’t do that to her.  She could walk unassisted, have conversations, feed herself, go to the bathroom on her own, she knew who we were, and quite frankly, I feel that she went to the nursing home way too soon!  The only reason why Mom was placed, aside from the obvious fact that Renee took her and put her there, is because us girls couldn’t get our act together and come together as a family, as Mom’s daughters, to care for her.  We fought with each other about who and how, what and when, instead of communicating effectively. The only family meeting we had was the one meeting right after getting Mom's diagnosis.  That's it (although I tried and tried). I told Kathy we failed Mom.  We couldn’t put our differences aside and think about what was best for Mom and how we were going to do what’s best for her.  With five daughters there’s no reason why our Mom should’ve had to go into a nursing home, especially this early in the disease.   We let Mom down.  Kathy said she never thought of it that way.  She started to cry.  We both did.

Kathy and I also talked about the fact that I wanted to come back home and care for Mom as soon as I found out Renee was going to place her.  She said that Renee didn’t want a temporary solution.  I said, what would it hurt for me to come back home and care for Mom for six months?  It would give Mom some more time in her home, to be around her family, which makes Mom happy, to have Sunday dinners with the family, and to save the $6,400 a month in nursing home costs.  What would be so wrong with that?  Not to mention the fact that this might have patched up some hurt feelings with us sisters and bring us back together again as we used to be.    Kathy agreed that she wished we could have made that happen.  She never wanted Mom put in a home, but Renee obviously used her power of persuasion.   

It’s too late now.  Mom’s been in the nursing home for 14 months.  She is doing okay at times, but I believe she has declined more rapidly as a result of being there.  It’s a nice place, but most of the residents are much more advanced than she is.  Most of them just sleep and many of them can’t speak.  Mom is not able to see her family very often as most of us are at least three hours away.  To me, it’s important to have the family around.  Mom is constantly asking to see her great grandson, whom she practically raised, and to go back home, and for all of us to be together.  She doesn’t have her familiar surroundings, or her family, and that makes me sad to see her long for that.   Because she is losing her memory, I think it’s important to have those familiar around her.

Renee is the one that sees Mom the most as she has placed her in a home in the town where she lives.  Mom has shown some frustration towards Renee and we have all heard it.  I know that it is probably because Renee is the one who is called when Mom is having a difficult time with bathing, taking meds, etc.  I am sure that it must be very demanding and frustrating for Renee to have to deal with this on a daily basis, but I have a hard time feeling sorry for her because she put Mom there, without our knowledge or approval.  Renee and Mom have had personality clashes in the past and it is apparent even still.   

I am praying hard and trying to forgive Renee for what she’s done.  We used to be so close.  I have to make peace with it, but I feel that she needs to explain why she did what she did, so that I can understand why she shut us out.  She gets very defensive, and then I get defensive, and we can’t talk without getting into a heated argument.  That’s why we don’t talk anymore.  I love her and I don’t want anything bad to happen to her.  I pray about it, and some days I feel better about everything, but more often than not I feel this deep sadness that we let our Mom down.  Renee let her down, and I guess we all did in our own way, and she let us down by not listening to any of us.  She’s our mom, too.  We want what’s best for her, too.  Instead we are left to feel that we’ve lost all rights as Mom’s daughters the day she took over.   If you have been following along on my blog, you will understand why I feel this way.

I’m praying for us all because we have a much tougher road ahead of us and we need all of the prayer support we can get.  I would appreciate it if you would remember my family in your prayers.  Thank you, and God bless you.

Blog 35: Sewing Some Love

I went to the store with my daughter the other day.  She was looking at fabrics to purchase for a project she was making.  I couldn’t help but think of my mom.  Going to a fabric store, for my mom, was like being in a candy shop.  My mom spent countless hours in fabric stores, looking at patterns and pretty fabrics to make her grandkids clothes when they were little.   She loved to sew, and other than painting, it was one of her favorite things to do.

I went through a sewing phase myself, a common interest I had with my mom.  But I didn’t have the passion for it like she did.  Looking at the calico prints brought back memories of the quilts I sewed for my kids, learning how to do it from my mom.  A quilt was easy, Barbie doll clothes, on the other hand, were hard.  But not for my mom.  

Next to a row of colorful, floral fabrics I spotted a cute little sundress hanging on a hook, and I was drawn to it.  I picked it up and inspected the details of the dress and felt deep emotions welling up inside.   My mom could have made that dress.  I showed my daughter and said, “This reminds me of what nana used to make for you.”   She looked at me holding the dress and she smiled in agreement.  It had a row of ruffles on the bottom, something my mom would have loved doing.  She loved little details like that.  It brought me back in time, many years ago.  I would go over to Mom’s house and she’d pull out a bag of fabrics and patterns she had just bought.   Mom would get so excited about it and couldn’t wait to start the project.  She could whip out an outfit in no time, sometimes starting in the evening, and not going to bed until it was finished.  To me, it seemed like so much work. To her, it was love.  

My mom made clothes for the grandkids but I don’t recall ever seeing anything she made for herself.  She was always thinking of someone else, serving and caring so unselfishly for her family.  I saved all of the clothes she made my kids, and I gave my daughter's dresses to her.  She has some of them hanging in her daughters’ closet for her kids to wear on special occasions.  Little did I know at the time, that my mom’s gifts to my kids would also be gifts to my grandchildren, and the way we save things, I’m sure my great grandchildren will be wearing those clothes in years to come. 

I miss my mom so much.  I wish she could be well again so she could do the things she always loved to do, and have meaning to her life again.  What is the meaning of her life now?  To sit in a nursing home and forget who, why, what and how?  I just don't get it.  She deserves better than that.  

Blog 34: This Is Lizzie, Mom

Mom has been in a nursing home for almost 14 months now.  The thought of ever getting to move her out of there resurfaces often, still, especially when she says certain things that tug at my heart strings, namely, that she misses her home and her family, and she doesn’t want to be there where every one is sleeping and people are dying.  I know that I cannot do what my sister won’t allow, so I try to put that thought out of my head and just concentrate on making my mom feel as happy and loved as I possibly can.  With every phone call and every visit, I give her all the love and attention she can absorb. 

I call and talk to Mom usually every other day, and sometimes we are on the phone for ten to twenty minutes, and sometimes it’s only a couple of minutes, before she is ready to get off the phone.   She always asks me if I’ll come over, and now, instead of telling her I can’t today because I don’t live there, I tell her I will come over, because she won’t remember anyway. I want to make her feel happy for the moment and it really does make her happy.  I tell her how much I miss her and she tells me she misses me, too.  I tell her I love her so much and she tells me the same thing.  It feels so good to hear my mom tell me she loves me.  Hearing those words from her make my day so much better, and I always hope that her hearing those words from me make her day so much better too.  When my mom is irritable or hangs up without saying she loves me, it seems to affect my day.  I know she hangs up sometimes because she forgets she is on the phone, or she thought she already said goodbye to me.  I also know that being irritable goes with the territory.

Sometimes when we are talking she will forget it’s me and she will say, you are Kathy, right?  And I’ll say, no, this is Lizzie, Mom.  Then she'll say, oh, that’s right.  She will also set the phone down and walk away or else hold it in her hand but forget I am on the line.  I’ll call out, Mom, Mom…Mom, are you there?  And usually she doesn't come back to me.  I’m afraid her talking on the phone is going to be a real problem down the road, and then I don’t know what I’m going to do.

I fly out to go visit my mom every two to three months.   Every time the date draws near that I am going to go see her I am filled with excitement, apprehension, and anxiety.  I just can’t wait to see her and see her reaction when she sees me.  Will she know who I am?  Will she embrace me?  Will I be able to make her happy?   I always have that fear tucked away that one day she is going to see me and not have a clue who I am. 

My mom is slowly, but surely, losing her mind.  She still remembers her daughters, all five of us, and she repeats our names from oldest to youngest.  She has sometimes referred to us as being her sisters, so I know that she is starting to forget that we are her daughters, even though she still knows our names and faces.   When I have gone to see her she will introduce me as her oldest daughter, and then she might later say something about me being a sister.  At least, for now, she knows that I am Lizzie.

When I go to visit my mom, I am there for at least a week, and I spend hours and days just trying to connect with her on her level.  It’s hard sometimes.  I want her to remember things that she remembered only months ago but now seems to have forgotten.  I bring up things from my childhood, hoping she will remember, but she doesn’t.  She is even forgetting some key things from her childhood.  That doesn’t stop me from trying to bring out some sort of memory. 

I bring her gifts, like some of my jewelry, or my daughter’s jewelry, because I know how much she likes it, and I bring her snacks, photos, etc.  On my last visit I brought 4x6 individual photographs of each of mom’s daughters and grandchildren.   She could name most of them, but not all.  The next day I put a label on each picture with the name of the person in the photograph and then I put them in the photo album I bought her a few months ago.  When I went back to see her the next day she had the album on her bed, and she opened it up and said all of the names as she looked at each picture.  She seemed to really enjoy having those pictures.  It’s almost like she knows she’s forgetting and when she looks at these pictures it makes her feel closer and reconnected to her family.  I could sense her drawing from the deepest recesses of her mind to remember some aspect of that person, and she would say something that she remembers about them. 

Mom has a music box that I bought her for her birthday a few months before she went into the nursing home.  She doesn’t remember it came from me, even though it has a picture on the lid of her and I.  She appears to really like the music box, as it is often on her bed or near it when I go to see her.  It plays the song, “You Light Up My Life.”  That song is appropriate because my mom lights up my life and everyone else’s who knows and loves her. 

Blog 33: I Need To Learn To Accept

It’s so hard to imagine that this is our life from here on out, with Mom having this relentless and progressive disease, with no chance of surviving it.  Watching her forget her life and all the memories she once had, and watching her slowly start to forget her daughters and her grandchildren that she loved so dearly, is like a long, drawn out good-bye.  It’s about as painful as anything I can imagine.  Those who see a loved one suffer like this know what I am talking about.

This disease has no happy ending.  Eventually death will come and it will be over.  Will having her gone be easier to bear than watching her suffer and deteriorate?  Both thoughts are just as bad.  My biggest fear is how am I going to be able to handle seeing her in those final stages? I’ve seen it with others, and I dread what’s ahead.  

I try to tell myself that this is God’s plan.  He doesn’t give us more than we can handle.  There is a reason for everything that happens to us in life, and no matter what we do, right or wrong, it does not change our destiny.   I pray, and I pray, and I pray that God will give me strength to face each day, one day at a time…because if I don’t have help with this, I will fall apart.  Just the thought of losing my mom is unbearable.

I know my sisters are feeling just as sick about all of this as I am.  Our communication is lax, and we aren’t leaning on each other for support.  Our anger builds, eating away at us, ready to explode at the first opportunity.  Everything is taken out of context, and rather than speak with love and understanding, we get defensive towards one another.   Then we ignore each other, and draw the blinds and cry alone.  As I said in an earlier post, we are drowning in our own ocean. 

I am working on getting you all caught up to the current time, but I need to write about some other things that happened to get us to where we are now. 

In August of 2011, I met with my sisters, Lynda and Kathy, and we discussed my plan of coming back home to care for mom.  I was going to give it one last shot.  They said they would talk to Renee and try to convince her.  I said that Renee won’t listen to me anymore and maybe she will listen to them.   At that time they were also having some issues with Renee, and questioning the decisions she had made.  They were my only hope.  Annie was totally all for it, but Annie was only talking to me.  Nobody was talking to Annie.  They were going to go through Mom’s house one last time, and that was the day I was flying back home.  I wanted to be there, but I couldn’t change my flight without paying for a much higher priced ticket to leave on a different day.  I was really hurt about that, that they left me and Annie out.

After this meeting at Mom’s house, I was anticipating a phone call from Lynda or Kathy, but I didn’t hear anything.  I assumed they weren’t successful in persuading Renee to let me care for Mom.  Four days later I called Kathy and she said she left Mom’s house after going through some things and Lynda was talking to Renee after she left.  She said she thought Renee would let me come back to care for mom.  I thought, really?  But she said I would have to talk to Lynda and see what they talked about.  Lynda never called me.  I thought that was odd.  I finally called her ten days later and she confirmed that Renee would probably let me be Mom’s caregiver.   She said Kathy was there for the entire discussion.  I was not understanding why she (or Kathy) didn’t call me THAT NIGHT, and say, “Lizzie, guess what?  Renee is going to let you take care of mom!!!”  Why didn’t she do that?  I was so worried that the reason why was that…either it wasn’t true, or Lynda and Kathy didn’t want me to do it after all.  Why didn’t Renee call me?  I feared that Lynda and Kathy really weren’t supporting me doing that because then it would mean they would have to come help out (even though I said I wouldn’t ask them to).  All kinds of things were going through my mind.  With our lack of communication, once again, it put us in a bad situation.  Nobody wanted to talk about it, and I admit, I was scared to call Renee.

Mom’s house sold in October, two months later.  It was too late to take her back home to live.  Our family home, that we had for 47 years, was sold to another family.  That was a very sad time for my family.  I hope that some day I can go inside and meet the new family and see that they are making their own happy memories in our home.  I will always think of it as our home, no matter who lives there. 

My communication with Renee had gone completely sour.  I ‘hated’ her (well, not really) for what she did.  She hated me for calling her out on her placing Mom in a nursing home, when we all promised we’d never do that to her, and her placing her three hours away from her hometown, when she promised she’d never do that either.  Not to mention the fact that Mom was not that advanced to where she needed to be placed.  She couldn’t face me, and I couldn’t face her.  Therefore, I was relying on Lynda and Kathy to go to bat for me, and for mom.  That was wrong. 

Lynda and Kathy were so influenced by Renee.  Renee knew she needed them on her side, and since they lived there, they knew they needed to keep Renee close if they were to receive any information about Mom.  We all know that Renee wanted my acceptance, too.  We were always close and I was always the one to support her in her endeavors.  She needed me, she needed my approval.  But I could not accept what she did and our battle continued until I just couldn’t take her hateful emails any longer, so I cut all communication with her.  I couldn’t say anything without her coming back at me with the most vicious insults, so I blocked her emails and stopped texting and phone calls.  We didn’t speak until months later, and that was when she made a surprise visit at the nursing home, while I was there.

That impromptu meeting did not go well.  Annie was with me that day and we had a wonderful visit with Mom.  Mom was so happy and she was doing so good.  It was just like old times.  Just as we were about to leave, Renee showed up.  Renee and Annie hadn’t spoken in about a year, and it had been months since I talked to her, but we thought we would try to mend things, and my boyfriend talked to Renee and said we should talk.  Renee came out to the dining room and stood by the table where Annie and I were seated.  All of us were nervous.  To tell the truth, I don’t remember much about it because it was such a bad experience.  It started off smoothly, but the problem began when shortly after Renee joined us, Renee called Lynda and told her we ambushed her and we were attacking her!  This was so not true.  I was so upset with her for alarming Lynda like that.  Lynda had no idea what was said, or anything.  All she knew was what Renee was telling her, that we were attacking her.  Then Lynda told Renee to just walk away.  I told Renee I want to talk to Lynda.  I told Lynda that we were not attacking her.  Lynda said we shouldn’t be having a meeting like this without everyone there.  I said, “How many times have I tried to have meetings and nobody wanted to!”  I said, “This was not planned, she just showed up here and we thought we could talk."  But Renee took the phone and proceeded to tell her just how horrible we were to her, and then she told me she may let Mom go back to (her hometown) but she will never let me take care of her, and then she walked away.  I knew this was all about ‘us’ and not about Mom, and, unfortunately, our mom has to suffer. 

We started to walk out to the car when Annie told Renee that God will get her for what she’s done to Mom and the family.  Renee turned around and walked up to us and said, something, I don’t even remember, and I raised my hand to hit her and I told her I hate her.  (I don’t really hate her, I hate her ways, as Mom used to say, and I wouldn’t have really hit her, but I was SO mad at her).  Annie told her, "Mom always says you're in jail. I wonder why?  Because she knows what you did to her."  And Renee said, “Oh please!  You know what she says about Lizzie?  She says you are a whore!”  That’s how my last meeting with my sister went.  Those were her last words to me.  It's been four months, and we haven’t spoken since.

When we left that night and drove an hour to my daughter’s apartment, I couldn’t do anything when we got there but curl up into a fetal position on the couch, and cry.  I couldn’t eat.  I was hurting so bad and wanted this pain to end.  I asked myself, “Did my mom really call me a whore?”  Surely she didn’t, and if she did, she didn’t know what she was saying.   I wanted to make things better with Renee, instead she and I both made it worse.  I knew my chances of ever getting to care for my mom were over, and I had to accept Mom’s fate, and ours, that she was going to live the rest of her years in a nursing home, and I can’t do a thing about it.

I needed to learn to accept.   

Blog 32: My Mom is the Wind Beneath My Wings

This is Mother's Day, May 13, 2012, and I wanted to post something different, something special for my mom.  My last post was about my mom being placed in a nursing home one year ago.  This post is current.  I will go back to where I left off on my next post.

Today I spoke to my mom on the phone and I told her Happy Mother's Day!  She said, thank you, same to you!  I was happy that she remembered that I am a mom, and I have kids.  I asked her if she got the Mother's Day card I sent her.  She said she wasn't sure if she got it, but I asked one of the staff and they said she did.  It's one of those musical cards that when you open it up it plays 'You Are My Sunshine'.  She was sitting on a bench outside of her room and she started singing the song, to which I sang right along with her.  She was just belting out the words and she knew every last one, too.  It sure put a smile on my face.  I knew then that she most likely had been looking at the card, over and over again, because that's what she does.

I am not able to see my mom today, sadly, but I was with her just a couple of weeks ago.  She asked me if I was coming over because she didn't want to be there alone.  Usually I remind her that I don't live close by anymore but I will be there real soon.  This time I told her I would come over.  Why not give her a happy moment?  It makes her feel good, and she won't remember anyway.  I know some of my sisters were going to go see her today, so she won't be alone.

The "Wind Beneath My Wings" song makes me think of my mom.  She made so many sacrifices in her life for her daughters and grandchildren.  My sister had the words to this song embroidered and placed in a frame that hung on Mom's living room wall for years.  I will forever be grateful for what she has done for us. She is my hero, she is the wind beneath my wings.  I love you so much, Mom!

Blog 31: Mom's New Life In A Nursing Home

I have made it perfectly clear that I didn’t want my mom going into a nursing home.  I wanted to take care of her.   About ninety-percent of our family felt that it was too soon for my mom to be placed in a nursing home, it wasn’t just me.   

Mom was brought to a nursing home on April 11, 2011.  She was placed there by Renee, the sister who went against the rest of her sisters and took the legal route to get guardianship and conservatorship, so that she could make decisions on her own.  She was now in control of mom and in control of how the rest of our lives would be with our mom.  I, and my other three sisters, lost all of our rights as Mom’s daughters.  We had no say in anything, and were left to feel helpless as we watched her do as she wished with our mom. 

Not only was my mom missing her family because she was placed in a facility three hours away from them, but she was also restricted from receiving phone calls from her children and grandchildren.  The only ones who were able to call and visit freely were Renee and her husband and children, who lived just minutes away.  What she did was unfair to not only our mom, but to the rest of her family. 

I called my mom and was able to speak to her the first week she was in the nursing home.  Renee was there the first couple of times.  After that week, I wasn’t allowed to call to speak to my mom anymore.  I was told she was resting, and was asked if I wanted to leave a message.  This happened too many times and I was getting worried.  I finally asked one of the staff members why I wasn’t allowed to talk to my mom and when I left a message, nobody would call me back.  They told me I have to talk to Renee.  I knew she was behind it.  For the next four months, our entire family was told we had to contact Renee if we wanted to speak to our mom/grandma. 

Renee told all of the family to call her cell phone if we wanted to talk to Mom and she would call us back when she was with her.  Her excuse was that there were too many of us and the staff can’t be bothered with a bunch of phone calls.  My argument to her was that she can’t possibly call everyone back when she is with mom, and my kids can only talk at certain times that are good for them since they have busy jobs and small children to tend to.  It is easier for my kids to call when they have a free moment.  It should not be up to Renee to say when they, or anyone else, can talk to her.  This control thing was getting so out of hand!  I felt that she was using that as an excuse because I would think that someone who is paying $6,400 a month for nursing home care, should be allowed to use the phone to talk to family.   Mom never spoke long and not everyone was going to call everyday.  I suggested paying for a phone for mom in her room.  It wasn’t allowed. 

I refused to go through my sister to speak to my mom, as this was just another one of her power ploys.  She wanted to be there to monitor the phone conversations.  She was always so concerned about what Mom was saying and what we were saying.  She needed to control every situation, control what mom said and what we said to her, and I simply did not want her to try to interfere with my own personal and intimate relationship with my own mom.  Mom was very different when we spoke when she was alone.  She could talk freely and she wasn’t distracted.  The few times I spoke to my mom when Renee was there, Renee kept talking to Mom and telling Mom what to say.  I could clearly notice the difference.  Mom was more herself and calmer when she was alone.  She could say what she wanted to say, without fear of reprisal.  She showed her true feelings, depression, too. 

I spoke with the manager of the nursing home and expressed my concern about not being allowed to talk to my own mom on the phone, when I live 1,600 miles away, and can’t just drop in like Renee can.  I told him I felt it was important for my mom to know that I love her and if she doesn’t get to talk to me, or my kids, she will feel that we’ve abandoned her and we don’t love her, which will in turn make her feel sad, hurt, and scared.  I also said that Mom and I are close, and I want to keep our relationship as mother and daughter close, because the time will come, sooner or later, that she won’t even remember me.  Every day is critical.  I told him I wouldn’t be calling everyday and that my kids will probably only call once a week because I will fill them in on what is going on with their grandma after I speak with her.  He understood my concerns and said he would talk to Renee.  He called me back and said she agreed that he could call me once a week to talk to my mom.  I said that’s not enough.  Then he said twice a week.  We selected the days for him to call.  The problem was, I would be waiting for the call, and he wouldn’t call.  He got busy, or he forgot.  I looked forward to those few minutes I could talk to my mom.  That system wasn’t working out.

I reminded Renee that she was not being fair to the rest of the family.  Why was she allowed all the freedom to be there for Mom while she was adjusting to her new surroundings (when she was the one who put her there) and the rest of us are kept away?  She was also allowed to take mom out, whereas the rest of us were not.  She said Mom was happy and safe there.  I told her, "Of course she's happy when you come to see her and you're dangling your car keys and saying you are going to take her out for ice cream."  She just didn’t see it from our perspective.   

I flew back to Chicago to visit my mom the week of Mother’s Day.  This was only a month after she went to live in the nursing home.  All of my kids and grandkids flew in, too.  One of my kids actually lives in Chicago, only an hour away from my mom, which is good, because when I go back to visit I have a place to stay.  While we were there, we weren’t allowed to take my mom out for a drive or for ice cream.  She would see me come into her room and she would immediately say, “Let’s get out of here.”  But we couldn’t.  Renee wouldn’t allow it.

Those first few visits were tough.   I went to visit her five times during that week.  My kids were there for the first visit, and that went well.   She seems happy when there are a lot of people, because she likes to see everyone.  But going there alone is a different story.  Mom is at her most revealing self.   Almost every visit I would find Mom laying sideways in her bed, with her coat and shoes on.  She would wake up immediately and jump out of bed and say, “Let’s get out of here.”  But I wasn’t allowed to take her anywhere. 

Mom was asking about her car.  Apparently they told her that her car was in the parking lot, so we went along with it.  She went on and on about her car.  My boyfriend was with me and he was able to help calm her about her car.  She wanted to go home and she asked who put her there and why.  She wanted to know who was paying for it and she said she better not be.  She said the longer she sat there the older she gets and she said she didn’t want to die there.  She said this is the place where people go to die.  She said she worked hard to save her money and she didn’t want it going to the nursing home.  She pleaded with me to help her.  The last time we walked out, before I flew back home, she followed us to the locked door.  I had to shut the door behind me and leave her there.  When only moments before that, she said, “When you leave, take me with you.  Don’t leave me here.”  I went out to the car and cried.

I understand there comes a time when someone may need to go to a nursing home.  When there’s no other options available, no one to care for them, when they can’t feed themselves, dress themselves, go to the bathroom, walk, etc.  But my mom was not like that.  And she had me and another sister who offered to take care of her in her home, or an apartment, or wherever Renee would allow it.  She just refused to let us.   

Renee had texted me as we arrived in town and she said she wanted all of us to go through Mom’s house because she was putting it up for sale.   Nobody was allowed to go into the house except her.  She had already been there and gone through everything and packed up and brought home what she wanted to keep, and threw out a lot of things that were of no value to her.  I always said that I should have been the one to do it because I am more sentimental and I would have made sure everyone got what they wanted.  Nothing would have been disposed of.  I offered to come back and do it, but she ignored my offer.  She picked a date to go through Mom’s belongings, but it was the day I was flying back home.  I told her I couldn’t that day.  We texted back and forth and finally she said she can’t drive the three hours to Mom’s house on the days that I was available to do it, which was just about any day except the day I was flying home.  She didn’t come up with a workable date, and she just let it go.  I didn’t know if my sisters went ahead and went through Mom’s house without me because she didn’t let me know the rest of the week.  I thought they all should have made themselves available for when I was in town because I was the only one who didn’t live there, and they knew for a month when I was coming home.   

Renee was going to have a Mother’s Day party at a park instead of her house, because Annie said she wouldn’t go if it was at Renee’s house.  Annie was also very upset with Renee for how she was handling things.  Renee changed her mind and said the party was now at her house, and she didn’t bother to invite Annie.   My kids and grandchildren, and two of my sisters went to Renee’s house for Mother’s Day.  It was very uncomfortable, as I couldn’t even talk to my sisters.  I thought they went through Mom’s house without me.  They didn’t communicate with me, and it was a very sad and hurtful time.  I wanted all of us to have a meeting, to talk about things and try to come to an understanding and put some of the hurtful feelings to rest, but Renee ended up leaving the party after an hour and a half, to go pick up her daughter.  We needed her there for the meeting because she was the one in charge of everything.  Another failed attempt at having a family meeting, just like it’s always been.  

I found out later that they all went through Mom’s house the day I flew back home.  Annie was not notified, so she wasn’t there either.  That was another promise Renee made, that she would not go through Mom’s belongings unless all of us girls were there.  Lynda also said she would not be a part of such a thing unless we were all there.  Well, two of us weren’t there.  That hurt pretty bad.  They took what they wanted and Renee threw out the rest.  Mom’s favorite rocker was put in the trash, her dining room table that I gave her disappeared, and most of the furniture was given away or thrown out.  I don’t know what happened to all of mom’s jewelry and personal effects, but I didn’t get any of it. 

Four months after Mom was placed, and after another trip up there to visit my mom, I was finally able to successfully change the rule Renee set about having to go through her to talk to our Mom.  They changed the rule after a lengthy discussion I had with the manager.  I told him it was ridiculous that my mom is not allowed to talk to her grandchildren.  I said they are all good kids and she loves all of them.  I told him this is hurting everybody.  He said he would talk to the team and talk to Renee to see about allowing Mom’s family to call her freely.  So, my kids and my other sisters and their families were finally able to call mom whenever they wished, without having to go through Renee. 

I got to know the staff and I developed a relationship with them.  The manager and I got to know each other through our phone conversations and meetings at the nursing home, and we developed a friendly relationship as well.  My boyfriend was able to explain some things that have been going on, from his perspective.   They understood the family dynamics that were going on.  They felt bad, but they had to follow the rules set by the power of attorney, whether they agreed with them or not.  Unfortunately, and I think some of the staff agreed with me, things should have been handled differently.

The manager told me the nursing home staff all like me and they enjoy my visits as well.  He said they can see how happy my mom is when I come to visit her and they believe that I am a loving and caring person who only wants what’s best for my mom.  They all knew that I still wanted to take care of my mom, and it had nothing to do with them or the care they provided for my Mom.  I told them that I appreciate what they do for my mom, it’s just that I felt that Mom should be with her family in her final years of her life.  They understood.    

On that second visit back, I was able to take my mom out of the nursing home to go for drives and out to lunch.  We went shopping a couple of times, and we just sat in the car numerous times, just to be alone to talk.  It was nice to have that freedom to do that.  Mom often told me she wanted to go home.  She confided in me about a lot of things.  I told Mom not to worry about anything.  I told her everything will be ok.  At that time I was still trying to get Renee to let me take care of mom before her house was sold. 

I went back to my hometown during this trip back, and I met with my sisters Kathy and Lynda about my wanting to care for Mom before her house gets sold.  They told me they were not understanding Renee’s decision to have Mom go to a nursing home when I offered to care for her, and they were on board with me.  I told them I need their support because Renee won’t let Mom go if it’s just me that wants to do this.  They promised me they would back me up and tell her to let me care for mom.  Originally they went along with Renee in what she was doing, but they were finding out that things were not as they thought they would be.

Before I flew back home my sister Kathy met me at my Mom’s house.  She had a key and let me go inside mom’s house to look around and see if there was anything I wanted.  It was listed for sale and almost everything was gone, so Renee told Kathy she could let me go inside the house.  She wouldn’t let me when the house was still intact, with everything still there.  She only had a few minutes so we walked quickly from room to room.  It was so sad and almost hard to imagine that our family home was gone.  To me it was gone already because Mom was no longer living there and all of the things that made it a home were gone.  The rooms were bare.  The only items left were what was left behind in the closets and kitchen cupboards.  The garage had a few boxes and items placed in there, along with Christmas boxes.  I took a wrought iron mirror that I bought my mom for Christmas when I was 18 years old, and a wooden wind chime that was still hanging on the back patio.  Mom had about five of them, and I wanted to have one to listen to on my own back patio, to remind me of my mom.  I wrapped these two items in plastic and I hand carried them on the airplane to make sure they got home safely with me.

I still had hopes that I could come back home and get Mom out of the nursing home.  My boyfriend was totally onboard with this idea.  Mom likes him a lot and they get along very well with each other. I talked it over with all of my sisters and said that I thought this would be the best thing for Mom.  She wants her family, she needs us and we still needed her.  I said that we could have a family meal every Sunday, and whoever was able to could come over and be together with Mom.  I told my sisters I wouldn’t be asking them to pitch in.  I would hire someone to help care for Mom.  I had a wonderful plan.  I knew it would be hard to carry it out with having to deal with a difficult sister, and the problems we would most likely have.  I knew that it could cause a strain on my relationship with my boyfriend.  I also knew what it would be like caring for someone with Alzheimer’s.  I knew what I was in store for…I cared for Mom for six months.  I knew it wouldn’t be easy.  But I love my mom, and I truly felt that this was the best thing for her.   

Blog 30: One Disease, A Million Fragments

Mom was pulled from her home and taken away by one of my sisters, who gained control of everything.  I lost my rights as a daughter the day Renee got control.  My other three sisters lost their rights, too.  It’s so sad, what happened to our family.  Alzheimer’s changed all of us.  We were no longer the same.  Each and every one of us broke apart.  We were no longer considered in decisions regarding Mom.  Only one person was making all of the decisions, with no consideration for the rest of us, and that caused the separation of our sisterhood.  One disease, a million fragments.  Could we put us all together again?  

Mom was very scared when she was taken and secretively admitted to the hospital.  It was a very emotional time for her and she did lots of crying.  Mom had to sit through a hearing with a magistrate, alone, because Renee left her in the hospital for two and a half weeks and went on vacation.  She told the hospital not to release her until she returned.  When she was released, Renee picked her up and brought her to live with her in the suburbs of Chicago.  The judge said she couldn’t go home.  Renee got her wish, but she didn’t want to bring her home, she wanted her placed in a nursing home.  She kept Mom with her until she found one.  She promised all of us that she would not place mom in the Chicago suburbs, where she lives, because it is three hours away from her hometown, where three of her five daughters lived, and most of her grandchildren and great grandchildren lived.  She said she knew how important it was for Mom to see them and for them to see her and she wouldn’t take her away like that.  Everyone was worried she would not keep her word.  And they were right to worry. 

There was so much hurt and bitterness towards my sister for what she had done.  I didn’t even want to see her or go to her house anymore.  We used to be close, but we were separated by our differences.   I didn’t understand why she did what she did and how she didn’t even care how anyone else felt about it.  Our feelings were not considered.  We were left to feel helpless and ignored.

We always promised Mom and each other that we would never put her in a nursing home.  We said that she took care of us and would do anything for us, so we would do anything for her.  She has five daughters, and it’s not like there weren’t any of us who were willing or able to care for her.  Mom feared going into a home and she often said we just wanted to get rid of her and put her in a nursing home.  We promised her we would not.  Renee seemed to have forgotten about all of that. 

We had discussed with each other that the only time we would consider placing Mom is when she can no longer walk, dress herself, feed herself, go to the bathroom on her own, and when she no longer knew us.  That was the only time we would consider it.  We made that promise to each other.  Mom was still able to do all of those things.

Mom lived with Renee for six months.  My sister Lynda said that it was working out and she was going to stay indefinitely.  I thought maybe Renee realized Mom wasn’t ready to be moved to a nursing home, but I found out later, things were not working out with Mom there, and she was getting everything in order for her to go to a nursing home.  Renee and Mom always had a strained relationship, it wasn't any different now.

Renee had taken Mom to a new doctor there and had another evaluation done.  It was determined that our mom had a combination of things...vascular dementia, probably brought on by high blood pressure and cholesterol, with some alzheimer's, and possibly even lewy body disease.  It's been a year and a half since I've heard anything new and to this day I don't see any signs of lewy body disease.  Mom does not have nightmares or hallucinations and she doesn't show any parkinson type symptoms.  I know that diagnosis can change as time goes on, and I do not know if there's new information, because Renee doesn't share that with me. 

Mom does have sleep apnea, even though she is very thin, and that could have contributed to the dementia.  My sister Lynda always wanted Mom to go in for a sleep study but Mom refused.  Lynda works in the field and she feels very guilty and responsible for not making Mom get help for it years ago, when she first noticed she had it.  Hindsight is always 20/20.  None of us ever thought about dementia or anything like that, ever before.  It's not Lynda's fault, it's not anybody's fault our mom got this disease.  I remember seeing Mom breathe like that for the first time.  I was living with her and caring for her, and I walked into her room to check on her.  She wasn't breathing and I thought she passed away!  I was so very scared.  I looked at her chest and saw no movement.  I stood there frozen, just staring, waiting for her to breathe.  After a minute, she drew in a big breath.  I started noticing her breathing pattern when she was sleeping.  She would breathe normally and then stop, and after several seconds she'd start breathing again.  It was scary.  I don't know if that caused the dementia, but according to Lynda, it probably was a contributing factor.  

When I called to talk to my mom while she was living with Renee I was often not able to talk to her.  If Renee wasn’t there, a caregiver was with mom, and Renee instructed the caregiver to not answer the phone.  If Renee's kids were home with my mom, they were told not to answer the phone.  It seemed the only time I could talk to Mom was when Renee was available to monitor and listen in on the phone conversations. 

Mom would try to talk secretively, and she would tell me that Renee was listening in.  She said she was afraid of her. She told me she had something to tell me but she couldn’t do it over the phone, and I was not able to just stop by since I lived half way across the country.   Mom would go into another room to talk, but Renee was probably listening in on another line.  Mom told me she wanted to go home.  I don’t know what Renee was so worried about.  I was not going to say anything to upset my mom.  I was happy that she was with one of her daughters instead of a nursing home, even though I didn’t want her with Renee.  I could never have any privacy with my mom.  I did go back to see her during this period of time and I took her out of my sister's house for the afternoon.  We had a long talk and all Mom would say was that she wanted to go home.  She was worried about her plants and her home getting broke into.  I assured her my other sisters were taking care of her home for her.

After six months, I received a text message from Kathy.  She told me Renee was going to be placing Mom in a nursing home next week and that Mom won’t live past Easter if she puts her there.  She was very upset and wanted me to do something to stop her.  I had no idea the time had come for her placement.  Nobody told me anything prior to that text.

I quickly responded and offered to come back to my hometown and live with Mom again and care for her. My boyfriend was willing to come with me and help with her care. I said I would do it for three months and possibly six.  We can reevaluate her condition and see how things go.  I strongly felt that Mom didn’t need to be placed yet.  I offered to do this to help Mom, first and foremost, and to save money, and lastly, to bring our family together again.  The nursing home she had selected costs $6,400 a month.  Mom doesn’t have that much money and she would run out, and then what?  Mom would have to go to a state run facility.  I didn’t want to see that happen.  So I offered to care for mom in her home.  But Renee refused.

Renee said she already did all the paperwork and leg work to get Mom placed.  She didn’t want to let me care for her at that point.  But where was her communication during this time, why didn't she let me know?  Once again, she controlled Mom’s future.  She placed her in a nursing home on April 11, 2011, only a couple of miles away from her house, which she promised all of us she would not do.  She was three hours away from most of her family, which created a hardship for most of them to come see her.

Even after Mom was placed in this home, I tried for several months to get Renee to allow me to come home and take care of Mom.  Renee was putting my mom’s house up for sale and my sisters were freaking out.  I wrote up a plan and sent it to Renee and all of my sisters.  Everyone else was in agreement with me doing this, but the one who wouldn’t agree was the only one who had the power.  I met with Renee and gave her my plan, but she got mad at me for even bringing it up.  She said it wasn’t good to move Mom again.  She said it would be a cruel thing to do to her.  I didn’t see it as cruel to bring Mom back to her home, when that’s all she kept saying was that she wanted to go home.   Renee moved Mom three times in the past six months.  She took her from her home, placed her in a mental ward, moved her to her house, and then put her in a nursing home.  She had made her decision and the rest of us needed to just deal with it.  She put Mom’s house on the market.

I felt that Renee had a personal vendetta against me, and therefore, she was not going to let me have Mom.   She knows I am a good person, responsible, caring, and nurturing.  I raised three wonderful kids who are now on their own, with their own families and successful careers, and I had the time, since I wasn’t working.  She knows I lived with Mom for six months and cared for her.  Now she cared for her for six months, too.  I felt that she did it, just so she could say she did what I did, and she didn’t want me to have her longer than she did.  I know that sounds totally foolish, but Renee would keep records of each and every time she came to visit mom and how long she stayed with her, etc.  I felt that Mom was being sent to a nursing home, simply because Renee didn’t want me to have her, when there was no good reason why not, other than the fact that she didn’t want to lose her control, or see me have success with caring for mom.  I don’t know if I would have success, but I was willing to try because my mom was worth the effort.

I even told Renee she could keep the control of everything.  I said I would live with Mom in her home, in an apartment, wherever…just so she didn’t have to be in a nursing home with strangers.  

Mom was so sad and scared.  Renee continued to control us by not allowing us to talk to our mom on the phone.  I will talk about this in my next post.