Blog 42: A Wonderful Visit With My Mom

I recently flew back to visit my mom with my daughter Rose and four year old granddaughter, Abbie.  Mom was sleeping when we walked into her room at the nursing home.  I quickly replaced the photos on her wall where she scratched out my face.  It didn't even really bother me because I know my mom has dementia and gets confused about things.  It was very evident during our weeks visit, as we would find out.  Mom's memory has declined and her behavior is more confusing.

After replacing the photographs with new ones I sat on my mom's bed and watched her sleep.  She was in a deep sleep and I didn't have the heart to wake her, yet I was so excited to let her know we were there.  After a few minutes I touched her arm and said, "Wake up sleepy head." She woke up suddenly and smiled at me.  She said, "Oh, Lizzie!"  She then looked over at Abbie standing by the bed, and she said, "she's beautiful!"  Mom asked what her name was, and asked again and again throughout the day.  It has been over a year since they've seen each other in person.  Abbie was a little shy and seemed scared at first.  It's understandable that a four year old would be apprehensive when seeing someone with behavior that is different from what they are used to.

Abbie was reluctant to give her great grandma, or big nana, as she calls her, a hug.  But when she did it seemed like neither one of them wanted to let go.  I have another picture of them hugging and my mom had tears in her eyes.  I couldn't tell if they were tears of happiness or sadness, maybe it was a little of both.   Mom's face looked so sad.  Clearly my mom needed these hugs and I believe Abbie understood that.   Mom is not as likely to give out hugs to anyone else so Abbie was very fortunate to get them!

Mom wanted to braid Abbie's hair.  She did a great job of it, too.

My mom was just wonderful that first day.  She was so happy and relaxed.  We took her out for lunch and went for a drive, and then we went down to the river and fed the geese.  My daughter snapped a picture of me holding Mom's hand as we walked to the car.  My mom isn't as steady on her feet and needs help getting up and down curbs and getting situated in the car.

The next day Mom was different.  She was still happy to see us but she was acting much more confused and she was complaining about some of the staff and residents there and even about her family.  Mom is really starting to forget who her family is and how much she always loved and protected each and every one of us.  When she says things about someone in the family it makes me sad for my mom.  I know she doesn't mean what she says but it still hurts to hear it.  She gets her daughters mixed up and her grandchildren, and she will say something about someone that isn't true.  She may remember some little thing from the past, but then the story gets twisted.  She even said, "Lizzie steals my things."  I said, I'm Lizzie mom, and she said, "Well, I don't mean you. I'm sorry."  Sometimes it's hard to tell if she even knows I'm her daughter anymore.

On the last day of our visit my other daughter and her boyfriend came to see my mom, and an old and dear friend of my mom's drove the three hour drive to see her, too.  He is also 76 years old and is in pretty good health.  They've known each other for over 50 years.  He hadn't seen my mom in about two years.  My mom didn't recognize him, but after they talked, and he brought up some things from the past, she said, "I think I'm beginning to remember you."  She said some inappropriate things to him, but she does that sometimes.  He understands that it's not my mom, it's her illness that makes her talk like that.  I was really happy that he came to see her and he said that he would be back.

My daughter and I took a bunch of pictures and I would post more but I am trying to be respectful of my mom and my family and keep our identities private at this time.  Some day I may change my mind, but for now, I think this is best.  We got some wonderful four generation pictures that we will cherish for a lifetime.  I almost feel guilty about snapping pictures though.  My mom always hated having her picture taken, but now that she has dementia, she cooperates.  She even seems to like it now.  I think if my mom was in her right mind she would be throwing her hands in front of her face like she used to, saying...Lizzie, STOP!  

I think my mom had too much stimulation with all the visitors there on our last day. After the others left, my daughter and granddaughter and I said good-bye.  My mom was kind of agitated and was saying things that didn't make any sense.  I knew it was time to leave, and I knew it was going to be hard.  I tried to hug her and she kind of pulled away, as she did with Rose.  She did give Abbie a hug.   I told her I love her and she said she loves me, too.  We said we'd miss her very much and she said to come back soon.  She looked so sad sitting in her rocking chair.  It was as if she knew that she can't communicate the way she wants to and she knew that there was something wrong with her.  I really and truly felt like she was crying out for help,  and she wanted me to understand she doesn't mean the things she says.  She wants us to know she loves us, and I do know she loves us all very much.   

As we walked out of the room her last words to me were, "Be careful."  That look on her face and those words told me that my mom knew I am her daughter.  Just those two words and the hopeless expression on her face made my eyes fill with tears as I walked out to the car.  I felt so incredibly sad and helpless.  Rose got into the car and she hugged me and cried, too.  She said she probably won't remember her the next time she sees her, and sadly, she's probably right.  Abbie, having never seen her nana cry, sensed our pain and said, "Awwwwwwww," as she watched her mom and nana hold on to each other as we cried our silent tears.  

Blog 41: Will You Sing Happy Birthday To Me?

It was my birthday on Saturday and when I awoke, the first thing I wanted to do was call my mom.  Big surprise, huh?  I noticed I had missed phone calls and text messages from family and friends, which all put a smile on my face, but I needed to start my day off with my mom's voice.  I remembered last year on my birthday, when I called my mom, and she immediately started yelling at me about taking her money.  I told her I didn't take her money and I started to cry.  I was so emotional that day because of everything our family has been dealing with because of her illness.  I am her first born, and I consider it a special day for her too, for both of us.  She started crying and said she was so sorry and that she knows I didn't take her money.  She kept saying, "Don't cry, Lizzie, don't cry."  I couldn't stop and I told Mom I was sorry.  I felt so horrible for making her cry.  I told her I just miss her so much.  She said she misses me too.  It was like the tears I shed brought her back to herself again as a loving, nurturing mom.  That phone conversation ended well, but the fear of her yelling at me on this birthday almost made me not want to call.  But, I needed to.  I needed affirmation that she was having a good day, so I could have a good day.

When I first called, one of the staff, Debbie, gave Mom the phone and just walked away. Mom didn't say anything.   I waited for her to answer but she didn't.  I called back.  I told the front desk lady to please tell Debbie that she needs to make sure my mom takes the phone and engages before she leaves her.  I had to tell the front desk lady because when Debbie answers, she immediately hands over the phone before I get a chance to say anything to her.  I could feel emotions welling up.  I wanted so badly to talk to my mom.  Anyway, the second time around Mom stayed on the phone.  Thanks Debbie.  I told her it's my birthday and of course I knew she wouldn't remember that.  I asked her if she would sing Happy Birthday to me.  She said she will later.  I said, "Will you sing it with me now, Mom?  Please?"  Then I started singing and she sang with me.  She sang the whole song and I was so happy to hear her do that because I am well aware that this may be the last birthday she will be able to.

We started talking about other things.  Actually, I let my mom talk if she has things to say.  Usually she talks about someone from the past, that is no longer here.  She says she just saw so and so, or she talks about certain things they do.  Her brother is gone, but she said she saw him the other day.  She said my sister smokes, but she hasn't in years.  My mom asked me if I was married to Josh.  I said no, we aren't married.  She seemed surprised and said, "You're not?"  I don't have the heart to tell her we don't see each other anymore.  She asks about him once in awhile, says she wants to dance with him again.  He was good to her.  I told mom I will be there in a couple of days with my daughter and granddaughter.  She asked if Josh was coming and I said I don't know.  Of course he isn't, but I didn't want to tell her that.  Mom seems so excited to see her great granddaughter.  That makes me smile.  She asked me what day we'll be there.  I said on Wednesday, and she said what day is it today?  See, she's slick! She may get the days all mixed up and not have any concept of time, but right at that second she does.  She can still tell the time on the clock, too.  I usually just tell Mom I'll be there soon because if I tell her in a week, two weeks, or a month, she says that's too long.  Soon is the best word to use.

I asked Mom what she wants me to bring her for a present and she seemed confused by that.  For a split second I was thinking maybe she was wondering why I asked her what she wanted when it's my birthday, because then she said, "What do you want?"  She said, "I can make you a wedding dress if you want me to!"  She's still thinking about Josh...great.  I said that would be very nice, and I remarked on the beautiful dresses she made.  She said she doesn't have her sewing machine though.  It made me feel good to think that my mom wants to do something special for me.  She's still in there, and she comes out every now and then.  I'm glad we had a good conversation that day on my birthday.  It was so wonderful to start my day off like that.

The conversation ended when I lost Mom to the music when she turned her dancing dolls on.  I knew she'd be gone then and wouldn't come back to the phone.  This happens a lot now.  I waited for awhile and called out to her a few times, then reluctantly hung up the phone, as she disappeared to the tune of Ba, ba, ba, ba, ba, baran...

Blog 40: Wanting to Make Peace

I sent my sister Renee a text the other night.  I was in the middle of my nightly prayer, asking God to please be with my family and help us to get through this difficult journey, when I stopped praying and picked up my cell phone and wrote the text message to Renee.  I just can't stand the distance between us, and all the hurt.  It takes more energy to hold on to the anger than to just let it go.  This is what my text said...

I want to let you know that I am ready to move forward and put the pain behind me.  It doesn't mean things still don't hurt, but I'm making my best effort to get past it.  Everyone of us is fighting a hard battle, no one is spared.  This isn't for mom because she doesn't know.  It's for my kids and wanting to set a good example for them that I can be a good sister, just as I am a good mom, daughter and nana...and for the benefit of hopefully having all of my sisters back.  Sorry it's the middle of the night but I have to say it now before I lose my nerve.  It's always the middle of the night that I am at my most vulnerable, scared, and lonely time.  Please accept my apologies for all that I have said and done to you that was mean and hurtful.  I never stopped loving you.

She wrote me back the next day and thanked me and said she appreciated everything I said.  She said she would get back to me after she's had time to process everything.

I wrote her back and said to take all the time you need.  I did.  We've been through a lot.

I don't know what will come of this but at least I feel better in knowing that I took the first step.  Now it's up to her.  Really, it's up to all of us.  I know she is going to want to address some things from the past that got us where we are but I am going to suggest that we not talk about that for awhile, so we can concentrate of moving forward and being loving and caring sisters again.  Then when we are in a better place maybe we can talk about the all the bad stuff and try to come to terms and make peace with it all.

The next day I called the nursing home to talk to my mom and she was not doing very well.  She was so upset and near tears.  She said she had a bruise on her left breast and she needs to go to the hospital.  I could definitely sense her fear.  She asked me if I ever had that before.  I told her I get bruises all the time.  I wanted to ease her mind but there wasn't anything I could say.  Mom couldn't tell me how she got the bruise.  I told mom I will be there soon and she said she was not in the mood.  Before we hung up I told her I love her and she said she loves me too.  Then she said to come over whenever I can get there.

I called back and asked to speak to one of the care managers and one of the girls that I like there took the call.  I told her what my mom said and she said she didn't know anything about it since she was gone for two days.  She said she will check into it and I can call her back in ten minutes.  When I called back, Ansel, the manager answered the call and he immediately went off on me.  He told me that I have been told before that they cannot discuss any medical issues with me regarding my mom, that I would have to speak to Renee because she knows everything before my mom even tells me about it.  I told him that I was just concerned because she was so worried and scared. I told him I don't need to know anything medical, I'm just aware that her mood has been very agitated lately, and.......he cut me off.  He was very rude to me.  He hasn't been that way to me before, at least not this bad.  He's explained things to me in a gentle way regarding issues I've been concerned about, but this time he was very curt with me on the phone.  I don't know if he was having a bad day or what his deal was but I did not appreciate his tone of voice with me and his lack of professionalism as the director of that department.    He told me my mom is there because she needs to be and they are taking good care of her.  That is his personal opinion, and now I really have my doubts.  If he was that rude to me, how is he treating the residents, my mom in particular, when they are being difficult to handle?  He seemed to enjoy the fact that I am left in the dark and that he knows more about my mom now than I do.  His higher than thou attitude rubbed me the wrong way.  I only wish I had recorded the conversation.  I'd post it right here.

I guess when Renee and I can open the lines of communication, in a healthy and constructive way, I might be able to convince her to let me in on some things that are going on with my mom that I have no idea about.  I am her daughter, too.  Then I'm hoping she will let Ansel know that I can inquire about my mom whenever I want.

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.