Blog 77: One Year Later | The End

July 9^th marked the one-year anniversary of my mom’s passing.  This past year has been a time of learning how to live without my mom.  Her death was the greatest loss I have ever known.  As time goes on the permanency of her absence does not make things easier.  Just when I think I have a handle on it and the pain isn’t so bad anymore, something will trigger a memory and I’ll cry without a moment’s warning.  It’s been rough but I keep plugging away.   I’ve heard you can’t put a time limit on grieving and I’ve also heard people say they’ve never stopped grieving.  I keep telling myself it has to get easier. 

My four sisters and I were on a path of destruction when our mom was diagnosed with Alzheimer’s/dementia.  Our differences of opinions concerning Mom’s care, and our lack of communication, caused our sisterhood to shatter.  I mentioned before that we were drowning in our own ocean, sinking in the abyss.  That disease and what it did to our family is something I would not wish on my worst enemy.   I blame the disease, but I also accept responsibility for my part.  Each one of us has to do that in order to move forward in healing those wounds.    We have made some progress in reconciliation.   Some of us have, anyway.  I believe we will get there but it’s going to take a little more time. 

All of my sisters came to my daughter’s wedding last month.  I was so happy they came.  We had a good time and talked and laughed and danced.  We hugged each other as we danced to the song, “We Are Family" by Sister Sledge.  It was the way it should be, and I got a glimpse of what I know it will be like again one day. 

I don’t think too much about my mom’s last years when she was sick.  I focus more on the earlier memories when Mom was vibrant and happy.  I just don’t go to the sad memories.  It’s like my mind reverts to the happiest of times.  It still makes me cry, though.  I’m just so happy to have so many wonderful memories of my mom and our family and pictures to help keep those memories alive.  She was a great mom.  She was loved so very much.  Right now I am putting together a slideshow to honor her.  Every time I work on it, and going through the pictures, my eyes burn from crying.    

I will honor my mom for the rest of my life.  I truly feel her presence every day.   Sometimes I look for a sign and other times she sneaks up on me, reminding me that she is right here, right beside me.   I’ve come to believe that every time my wind chimes make that sweet sound, it’s my mom saying, "Hi, my daughter.  I'm here."  When I pick up a paint brush to paint a picture, mom is watching.  When my grandchildren wrap their arms around me, my mom is in there, too.  I could give you a hundred examples.  Mom took a piece of us to heaven with her and she left a piece of herself in us…so we are together forever.

Before I leave you, I want to thank you, my readers, for sticking with me and following along on my blog.  It’s been almost a year since my last post.  I just couldn’t find the words after my mom died.  It was really difficult to write this one, too.  Some of you have inquired as to how I am doing and I feel so fortunate to have had such caring, faithful readers.  I’ve checked here from time to time and have noticed that some days I still get hundreds of visitors.  Maybe I am helping someone on their journey with Alzheimer’s.  I hope so.  I hope people learn from the mistakes my family made.  I hope new readers will start from the beginning and read all of my posts to know just what can happen when a horrible illness like Alzheimer's strikes and how a loving and close family can fall apart when you stop communicating.  My first blog post can be read here...Blog 1: The Beginning.  Having my blog has served its purpose for me, and been a savior in some ways, but now this chapter of my life has ended, and I feel it’s time to let it go.  This will be my last post.  If I feel compelled to write again, I will.  I am not making any promises.   Thank you again to all of you for your prayers and comforting words.  May God Bless each and every one of you!

Note:  I am adding this in later, but I realized I didn't address the issue of my mom's autopsy report from my last blog post.  The Coroner's report stated that my mom died from a. acute pneumonia (hours), b. recent fractures of the left humerus and femur (4 days), and lastly, other conditions contributing to, but not related to the terminal conditions, is dementia.  Aside from having osteoporosis, my mom's body was healthy.  I had to have my daughter come over so we could read the report together because I was just too emotional.  Reading your own mom's autopsy report is so sad. It's hard to accept the fact that my mom ultimately died as the result of a spiral fracture of her humerus, and fractured femur, that she received when an aide took her in the bathroom to bathe her.  We are still struggling with this.        

Blog 76: A Life Without My Mom

Alzheimer’s isn’t a part of my life anymore.  My mom is gone.  Alzheimer’s/dementia and it’s ugliness, and what it did to my mom and my family, is no longer at the forefront of our lives.  That disease tore my family up.  My relationship with my sisters has gotten better, though with Renee, it is going to take longer to heal.  She is no longer in control of anything, though she does have some things of moms that we want to be able to go through as a family.  She said we will.  We’ll see.

Right now, if there is going to be a problem, it is what are we going to do once we receive the autopsy report?  There are two doctors examining the specimens to find the official cause of death.  It’s been six weeks and we are still waiting.  A death certificate hasn’t been issued and won’t be until the autopsy is finalized. 

Mom died as a result of negligence and possible abuse, as far as what me and all of my sisters think.  Renee doesn’t want to say it.  She doesn’t want to admit that because she feels some responsibility for placing mom in that facility, and making every decision solely on her own.  We are not blaming her, we liked that place.  It’s not her fault that this happened.  It’s so hard to just let this go.  We can’t!  Mom should still be with us.  If one of us girls had terminal cancer and an aide came to give us a bath and we came out of the bathroom with a broken arm and broken hip that caused our death, would Mom be thinking, oh, that’s ok, she was going to die anyway?  No!  Our mom would have gone after them and demanded answers.  We didn’t get any answers or explanations.  She would have sought justice for her daughter.  She would not let someone get away with it.  We can’t either.  

Here is a lock of my mom's hair.  I look at it every day.  Sometimes I take it out of the plastic bag and rub my fingers over the softness, and remember when I used to run my fingers through my mom's hair in the recent years. 

I went to my last Alzheimer’s support meeting and told everyone what happened to my mom, as I cried, and cried.  Everyone was shocked, and everyone understood my pain and comforted me.  There were some new people there who are just starting their journey with Alzheimer’s.  Gosh, did I feel compassion for those people.  What a tough road they have ahead of them.  I told the group leader that I won’t be coming back.  I was thinking to myself that it’s just too depressing to be there.

I feel so different now.  This is my new life, a life without my mom.  I remember when I was back in Illinois, visiting my mom at the hospice hospital.   The day before she passed away I went to the local Walmart, and I remember feeling like everyone was going about life like nothing happened.  Didn’t they know my mom was dying?  Couldn’t they see the pain on my face?  Wasn’t it obvious?  Did anyone care?  Why would someone honk at me when I am crying at the stop light and didn’t see it turn green?  That’s sort of the way I feel now.  Everywhere I go I see people going about life.  Heck, I’m going about life.  

With some people I notice a kindness, a difference in the way they look at me, talk to me, are with me.  Total strangers seem to be so nice to me.  I was thinking last night that I wonder if they see pain in my face?  Do they see something in my eyes that show sadness, maybe?  Do they know, is it that obvious that I am this pitiful, motherless person?  I was also thinking maybe it’s me looking at people differently now.  Am I different with others?  Do I have more compassion, am I more sensitive and see what others don’t see?  Am I only noticing those who are ‘this way’?  Do we share a connection that only those who have lost a loved one can see?  I always felt I was a compassionate person before Mom’s death, but maybe now I am just more hyper aware of others.  For sure, something has changed.  I know that the death of your mom changes everything in life. 

All of those signs before my mom’s passing, that I thought were signs that everything was going to be ok, were actually signs that God was taking my mom away.   I read the signs wrong.  By the way, I am not a deeply religious person.  I consider myself spiritual.  I admit that many nights I went to bed deliberately not saying a prayer, because I felt that God doesn't hear me and He doesn't answer my prayers anyway.  I feel that I am closer to God now.  Maybe because I need Him more now than ever before.     

The first sign was me buying a ticket to return to Chicago only three weeks after my last visit.   Usually I go every two to three months.  I was going to be there for three weeks to spend more time with my mom, but also go wedding dress shopping with my daughter (which we didn’t do), and go back to Iowa to visit friends and go to a golf tournament (which I didn’t do).   Instead, the trip back to Iowa was to bury my mom.  As it turns out, I was able to spend a week with my mom before her accident, and then be with her when she passed away, and still fly home on my scheduled flight a few days after her funeral.   God planned that.  He knew I needed to be there.  And I thank God that He put me there the day of the accident, not only so I could be a witness, but, so I could comfort my mom and she wouldn’t be alone. 

"When you look into your mother's eyes, you know that is the purest love you can find on this earth."  ~ Mitch Albom 

Another sign was a dear friend of mine gave me a silver necklace with an angel pendant and angel wing earrings a few days before my trip back to Chicago.  It was a generous and lovely gift.  He knew a little of our family situation and he knew I was going home soon to talk to my sisters about my mom.   We talked about that afterwards, in that it had so much significance in light of what happened.  I wore those angel earrings at my mom’s funeral.  She is an angel now, and I have an angel pendant to wear and keep her close to me.  Neither of us expected that gift to have such meaning.   God planned that, too.

God also made sure all of my sisters got together and talked, and made up, before it was too late.  We had a family meeting that brought us all together.  It was a meeting to discuss Mom going back to Iowa to live with my sister Annie.  That didn’t happen, but we did come together, finally, and Mom got to see all of her girls in one day.   We were also together and loved and comforted each other as we loved and comforted our mom when she was dying.  I’m so very thankful for that.  God made that happen. 

Here is a painting I did for my mom.

The day before our family meeting I was sitting with my mom on the back patio and looked up to the sky and saw a cloud in the shape of a heart.  It gave me a comforting feeling and mom and I enjoyed that sight.  I thought it was a sign that everything was going to be alright, that God was looking out for my mom and my family.  Instead, that was another sign that Mom was going to be leaving us soon. 

  

God knew our mom was going to die.  He didn’t plan her death to happen the way it did but He knew she was going to die on July 9, 2013.  We don’t have answers as to why, but maybe God saw that Mom had endured enough with her disease, and her daughters had suffered enough, too.  He doesn’t give us more than we can bear, but at times I felt like He almost did.  I realized life does go on, even after losing your mom.  It feels different, and I can’t explain it.  I am still grieving.  I do feel my mom’s presence, even if I can’t see her or talk to her the way we used to.  I have another angel looking out for me and for my family.   She is with me always.  I told her to show us signs that she is around us and I will be looking for her.  She is all around me.  I feel her, I talk to her, and she puts her hand on me when I cry for her.  This says it all right here...

This picture was taken many years ago.  My grandma is on the left and my mom is on the right.  Two beautiful angels.  

 

Memories are what I hold on to.  I am finding, as so many of you already know, that those memories are what keep us moving forward.  I have a lifetime of memories to carry me through, until one day I see my mom again in Heaven.   Now, my mom is in Heaven with her mom.  She is also with my dad and my grandparents and other family members who have passed on before us.  She has peace.  We have memories.  Life will go on.  I will make my life as beautiful as I can, for her and for the rest of my family.

Blog 75: Letter To Mom

The following is a letter I wrote for my mom and read at her funeral service.  I started the letter the night before and finished it before leaving for the funeral.  It was so hard for me to write it.  I was grieving, I was emotionally drained, and exhausted, but I wanted to do this for my mom.  It was my last gift to her.

When the song Amazing Grace was finished playing, it was my cue to go to the front.  I walked up to Mom's casket and I told her I love her and that I wrote her a letter.  Looking at her, I just couldn't believe this was happening.  Just one week ago we were together, laughing and talking about her finally getting to go home.  She was showing me how to whistle and we ate chocolate and loved on each other like we always did.  I painted her nails and she was still wearing that polish while laying in her casket.  I didn't know she'd be buried in a week.  I swear, I thought I was going to just break down and cry my eyes out.  I asked God to please give me the strength to be able to read my letter. The chaplain had told me previously that if I can't get through it he will read it for me.  I wanted to read it all.

I walked up to the podium and told everyone that this was so hard for me to do but I was going to do my best, and I started reading.  I cried throughout, but God gave me the strength to continue.  I felt His hand on me and I felt my mom's love, and I was able to read my letter.


Dear Mom,

It’s been three days now since you’ve been gone and I can’t seem to comprehend the fact that I am never going to see your beautiful face again.  I’m never going to hear your wonderful soothing voice, or your laughter, or you saying my name and telling me that you love me.  I’m not ever going to be able to talk to you on the phone, or touch your skin, hug you, and hold your hand.  We won’t be able to share stories with each other or comfort each other, or whistle together and eat chocolate together.  Just having you around, just knowing you were here, was so comforting.  I will live the rest of my life without you and it hurts so much.  I don’t know how I can live without you, mom.  I need you still.  I feel selfish for saying that because I know you are at peace now and in a better place with Jesus. 

I’ve had a hard time writing this letter to you, mom.  I couldn’t find the words.  There’s too much I want to say and not enough time to process those thoughts.  All I can do is mourn and grieve right now and try to get through each day, one day at a time, one hour at a time, one minute at a time.   Right now I just want you to know that the things I learned from you are what made me the woman I am today.  You taught me how to love and how to put my family first.  You taught me how to be a mom and a nana. You didn’t tell me how to do those things, you showed me by your example.  You thought of others before yourself.  You showed me that family sticks together, and you were the rock that kept us together.  You taught me that no matter what bad things happen to us in life, we can get through it.  You never judged me for the mistakes I made and you always knew my intentions were good.  You were my mom and you accepted me as I am and loved me unconditionally.  You made me feel special, and you made me feel important.  That’s what moms do, and that’s what you did perfectly, for all of your daughters.   You loved us all the same. 

You always told us when we were growing up that we should never hate anyone.  You said that we may not like their ways, but we don’t hate them.  I still think of that today.  I also remember you getting really mad at us if we swore and you gave us a list of words that we could say if we got mad.  Those words were dang it and darn it.  Anything else was unacceptable.  When I grew into adulthood, I could never swear in front of you.  That’s because I respected you.  There’s more stories I could tell you about, that I remember so dearly.  I hope to share these stories with my sisters and they share theirs with me so that we can keep all of those memories alive for the rest of our lives. 

I will think of you every time I eat ice cream.  Right now I cry every time I eat because you couldn’t eat in your last days…not even ice cream.  I will think of you when I look at the music box you gave me, it plays the song Unchained Melody.  Everything you ever gave me will be cherished and saved through the generations.  I think of you ALL the time when I am with my grandchildren.  I can understand the love you had for my children and all of your grandchildren.  I understand that love and I find myself doing the same things you did, and the feeling I have, I know that’s how you felt.  I will think of you on every holiday, every birthday, and every time I hear the song You Are My Sunshine.  I just know I will think of you all of the time.  As time goes on, they say the pain will subside, but I will always miss you, always. 

Mom, there are so many things I want to share about you.  I’ve been finding myself just wanting to talk to someone, anyone, about you.  I want to tell them about what a wonderful mom you were.  I want to tell them detailed stories.  I want everyone who hasn’t had the pleasure of meeting you know what a truly loving and kind person you were.  I hope that you don’t mind that I talk about you so much.  I guess it just helps me feel that you are still around.   

You will always live in my heart, mom, and in the hearts of everyone who loved you.   We will keep your memory alive, and I can promise you, there’s not a single one of us who will let a day go by without thinking of you and missing you.  You should feel like you accomplished something great while you were here on this Earth.  It’s our job to show you the greatness you achieved as you look down upon your family… your family, your pride and joy, your happiness in life.  You have quite a legacy you’ve left behind, and you should be very proud.  I hope we can always make you proud.  Right now you are dancing with the angels in Heaven, mom.  Your feet and your legs are moving gracefully, your eyes are bright and gleaming, and your heart is filled with joy.  God called you home so that you can be free of your pain and live in wholeness again.  Someday we will be together, but in a way, we are always going to be together because you left a part of you in all of us, and you took a piece of us to Heaven with you.  I love you mom and I miss you so much. 

Your loving daughter,

Lizzie

Blog 72: The Perspectives of Alzheimer's

The early stages of Alzheimer’s, from the person afflicted.  In this case, my mom. 

1. I want to drive my car.
2. Don't treat me like a child, I know what I am doing

3. They make me do things I don't want to do.
4. I can take care of myself.  I am fine!
5. Nobody understands me. Why won't you listen to me?
6. Where is my car?
7. Will you help me? Someone took my car keys, my purse, my money, etc.
8. I want you to know I love you even though I am acting differently.
9. I can't stand this. Get out of my house!
10. Don't make me take a shower, I just took one today.
11. I have lots of money that I have saved for you girls.  I've saved for years, but I don't know where it is.
12. I don't understand what is happening.


From a person who has a loved one with Alzheimer’s.  In this case, it’s me, saying what I said to my mom, and (what I wanted to say to her).

1. It's not safe for you to drive right now.  I will take you. (You might get in an accident and kill yourself or kill someone else).
2. Let me give you your medication at the scheduled time. (You can't take your medication on your own because you forget when you take it and you have been overdosing on it. You almost died, remember?)
3. Nobody is going to make you do anything you don't want to do. (We have to change your diaper now).
4. I know you can take care of yourself, I just want to be here to spend time with you. (Someone needs to be here with you so you don't get hurt).
5. I'm listening to you, mom.  (You just told me that a dozen times.  Or, now, I don't understand what you are trying to say).
6. Your car has been sold, but I'm telling you it's in the garage, at the house you no longer own, but you don't know that it is not your house anymore.
7. I can't find your car keys.  Maybe you put them somewhere?  Let's look for them.  Where did you last put your purse? (You have been hiding your purse and your money, I have been hiding your car keys).
8. I love to hear those words... I love you. (I hope you never forget me).
9. I know you don't like this, mom, but everything is going to be ok and I will always be here for you.  (I don't like seeing you like this. I hate this stupid disease, it is changing you and taking you away from us).
10. You need to take a shower (You haven't had one in a week).
11. You sure do have a lot of money, you worked hard for it and it is safe.  (Your money is gone, the long-term care costs have taken it away).
12. Everything will be ok.  We all love you and are here for you.  Don't worry about anything.  (You are dying and I am dying inside.  I am losing you, mom.  I can't live without you.)

What I think my mom would say if she understood what was happening…

1. I've lost my independence, which is the worst feeling in the world for me.
2. Thank you for coming to my house and saving my life that day I overdosed on my medication. I had no blood pressure.  If you didn't come I would have died on that fateful day in August of 2009.  But then again, if I knew I was going to live with Alzheimer's and dementia, I wish you wouldn't have come to my house.  I wish I would have died.  I never wanted to live like this.
3. I don't want people to see me like this.  I am doing embarrassing things and I have no privacy or dignity left.
4. Thank you for taking care of me and looking out for me.  I am scared and you make me feel safe.
5. I have so much I want to say but the words just won't come out right.
6. Please do what's best for me, for you and your families.
7. I'm sorry I blamed you for stealing my purse, my keys and my money.  You were only trying to protect me.
8. Always remember that I've always loved all of you more than anything in this world.  I want you to be happy.  That's all I ever wanted.
9. I can't believe I got the disease that I always dreaded.  A disease that changed me and made me say mean things to my loving daughters.  I wish I could take it all back.  I pray this never happens to any of you.
10. I'm sorry I put you through the pain of seeing me like this.
11. I know what is happening to me and to you, my daughters.  I know where my money went.  I know what went wrong with you girls.  I'm sorry you had to go through this, and I want you girls to come back together and stop fighting.  Do this for me.  I never raised you to be hurtful to one another.  I love you all so much.
12. Take care of each other when I am gone.  I will look down on you from Heaven and show you my love every day of your lives.  Watch for the signs.  You will see me all around you.  I will never forget you or ever leave you.  I live in your heart and you all live in mine, for eternity.  

Blog 71: Visiting My Mom

I just came home yesterday after spending a week visiting my mom in the group home.  Upon first seeing her I noticed that she has lost some weight.  She basically hasn’t changed a whole awful lot since the three months have gone by from when I last saw her.  She has lost some muscle mass and control and sits somewhat slumped over in her chair, but she is able to walk as long as she is being supported on both sides.

I met the two new people who are her caregivers.  One is a woman slightly older than me, and her English is not very good, but she is very sweet.  The other is a middle-aged man who speaks good English.  Both are wonderful with my mom and I felt so at ease when I saw how they are with her.  I realized that my interpretation of my mom having feelings for this man, as I stated in my last blog post, were wrong.  My mom no longer talks about men or shows any signs of flirtatious behavior whatsoever.  Her giddiness from when we last spoke on the phone had nothing to do with the fact that a man was hired to care for her.  I believe, after observing her behavior, that it is due to whatever medication she is taking.  She would often start laughing for no apparent reason.  Anyway, this new caregiver asked for my phone number so he could keep in touch with me and let me know how my mom is doing and send pictures every once in awhile.  He understands that I miss her so much since I can’t see her as often as I would like.  He has sent me three pictures of her already.  I appreciate that so much since I don’t get any information from my sister who lives there.   

I saw how the caregivers change Mom’s diaper.  She is in a standing position and the man holds her up while the female changes her.  They said it’s easier that way.  She sure doesn’t like that.  It was really sad to see how my mom just leaned her head into the man’s arm and cried 'noooooo' as the woman took care of things.  She also complained loudly one day when the aides came to give her a shower.  It’s a two-person operation and mom sure let them know how much she hated it.  When they finished and were walking her back to her room she said ‘shit’ as she struggled with each step, shaking from the traumatic experience.  They sat her in her chair and left, as mom cried real tears.  She said, “I don’t like this,” as she cried so sadly.  I told her I know she doesn’t and I tried to reassure her that I will do whatever I can to make her happy.  She looked at me with a ray of hope in her eyes and said, “You will?”  She just seemed so defeated and it took several minutes to reassure her that everything is ok, and that it will be several days before she needs to have a “damn, stupid shower again!”  That made her laugh and we were on our way back to being happy again.

When I visit my mom I always get out my laptop or my iphone and show her old pictures and current pictures of the family.  She has forgotten so much.  I am trying to keep her memory alive, struggling to, but not being successful.  In any event, I feel that this is important for me to do.  Occasionally she will recognize someone in the photograph or at least seem to show some memory of it.  The picture on the top is of her looking at a picture of herself when she was younger.  Last time I showed her she recognized herself but I wasn't sure she did this time.    

The lady who runs the group home stopped by and told me that the doctor was there recently and met with her and Renee and discussed some things about my mom and her treatment.  She asked me if Renee had spoken with me about it.  I said that Renee and I don’t talk anymore.  She said she is so sorry and she told me his name and said that I could call him to find out what was discussed regarding my mom.  I said that I can’t do that because Renee doesn’t want anyone talking to the doctors or nurses about mom’s condition.  She said, “What?  You are her daughter!  If my sister did that to me I would be so very upset with her.”  I told her that I am upset with Renee but I can’t do anything.  She withholds all information from me because she is in charge and wants it that way.  This kind woman told me to write down the doctor’s number, it’s on the refrigerator, and she said, “You call him anyway.”  I said I can’t, but I appreciated her understanding of our situation.  I did write down the doctor's name and number, but I won’t be calling him because I'm sure he won't be able to talk to me. 

I brought my mom some treats on different days.  I brought her favorites…potato chips, chocolate candy, ice cream, and coke.  She loves those treats.  I also gave her a little purse with pockets and zippers and different compartments that she could play with.  She is always fidgeting with something, so I thought she’d like that.  She sure did, too, and must have worked the zippers and flaps for an hour.   Mom always liked buying new purses.  Her caregiver told me that she said, “Lizzie gave this to me.”  She remembered!

I painted mom’s fingernails and she held her hands motionless so I could do it.  Then I held her hands as the polish dried.  Mom let me rub her shoulders and her neck and arms.  She let me kiss her cheek and hug her and get close to her.  I saw a video of someone showing that if you get right up to the face of a person with Alzheimer’s, and get really close and look into their eyes while stroking their temples and speaking softly, that they will respond and come out of their world somewhat.  I did this with mom and oh boy, does it work!  I didn’t stroke her face because she didn’t seem to like it but I did get very close to her face as I held her hands, and I would say, “Mom, look at me, look at my eyes.”  She would do it and I cannot even begin to explain how this seemed to transform her into a blissful state.  She seemed to feel at ease, comforted, safe, loved, and she and I bonded when I did this.  I actually got a couple of videos of doing that with her.  I sang ‘You Are My Sunshine’ to her and she just looked into my eyes.  It was so wonderful.  I really feel that we both could deeply feel each other’s love.  I am so happy I got those beautiful moments on video.

Mom was not able to say her daughters’ names when I asked her but she was able to read them when I wrote the names on paper.  She couldn’t read her own name but she was able to read other words and even spell a couple of words.  She did know who I was because she would say my name while we were talking.  Yet if I asked her who I was she wasn't able to say my name.  It’s weird.   She also would say someone in the family’s name just out of the blue.  She mentioned her sister, three of her granddaughters, a grandson, and two of my ex-boyfriends.  She only said their name and that was all.  I don’t understand her mind but I am learning to accept what she says and does and communicate with her in ways that works for us. 

I told my mom I love her many, many times.  Most of the time she said it back to me, and probably not remembering that I just said it to her ten minutes prior.  She offered some words to me, too.  She told me I am beautiful and she said that I am perfect.  Those are words a mom tells her child, and those words tell me that she is still nurturing and loving her daughter. 

My son, daughter-in-law, and grandson came into town from California to visit my mom, their nana.  My daughter who lives close by also came for a visit.  She’s the one I stay with when I am in town.  It was sort of like old times.  Everyone enjoyed the company of my mom and she enjoyed their company, too.  My three year old grandson sang a song that he learned in pre-school to sing to his mom for Mother’s Day, and he modified it and changed the words from mommy to nana.  It was to the tune of ‘You Are My Sunshine’, the song I always sing to my mom.  It went like this…you are my nana, my special nana, you make me happy when skies are gray, you never know nana, how much I love you, so please don’t take my nana away.  He sang it perfectly!  My mom loved it, I could tell.   It took a little while for my grandson to warm up to her but when he did, he was being very loving to his great nana.  He seemed to understand her limitations and the way he related to her was very touching. 

On the last day of visiting my mom, Renee came in.  It was pretty uncomfortable but we managed to talk more as we realized neither of us was going to choke the other.  I don’t even want to get into what all we talked about but basically it went ok. I asked her about her kids and she didn’t ask about mine.  I told her I was proud of her after she told me about what she is doing for work.  I was a good sister and a good listener.  I told her I miss her.  I said that I am so sorry that we have all fallen apart and that we are no longer close.  I told her that life is short and we should do everything we can to make things better.  It won’t get better on it’s own, and by ignoring each other.  She tried to bring up old emails and texts and I felt my blood pressure going up.  I told her to let it go because we will never move forward when we keep going back.  I really don’t see anything changing after our talk and I’m still going to stand back and wait for her to initiate the next move.  I didn’t even ask her about the doctor visit or anything. 

I asked her how long Mom is going to be at the group home because I know her funds are running low.  She said for about two months and then she will have to go to another facility that has a Medicaid bed, and probably back in her hometown.  It’s like, she took her away, spent all of her money, and now she’s ready to ship her off back home.  Of course I didn’t say that to her.  I did say that she is our mom and I wish there was some way that one of us could take care of her.

Mom is scared.  I can sense it.  I don’t want her to be afraid.   Renee said that mom doesn’t want to live like this.  Of course she doesn’t.  She has no choice and we don’t either.  We have to make our mom feel safe and loved.  That is our job.  She gave us our life, we can’t give up on her.  We have to give her the best life we can because her life is in our hands now.   

Blog 69: Feelings of Guilt | Talking on the Phone

Sometimes I like to make personalized cards for the special people in my life.  Here's a simple card I made for my mom on Mother's Day.  On the front is a picture of one of my paintings... 

It’s been three years since my move to Arizona.  So much has happened during that time, with Mom’s illness and the family struggles since then.  I’ve often beat myself up with feelings of guilt for even leaving Iowa in the first place.  What could I have done differently?  Would I have been able to keep Mom in her home longer?  Would I have been able to save our sisterhood?  I guess I’ll never know the answers to those questions. 

I do believe that I could have done a better job than what my sister has done in communicating with all my sisters and letting them know what’s going on with Mom.  I would not have isolated anyone.

I also believe that if I were in charge, Renee and I would be in huge conflict, just as we are now, but for different reasons.  So I think I just answered one of my questions. 

My mom chose me to take care of things, and I feel I let her down.  Way before she had Alzheimer’s she told me she never wanted Renee in charge of anything.  She told me that the day she had her Will prepared.  Her words keep resonating in my mind.   When am I going to be able to stop torturing myself for this?

Everyone tries to make me feel better.  My kids, two of my sisters, my friends, my mom’s sister, my mom’s friends and other family members, all tell me that it’s not my fault.  I didn’t create the problems that Renee created.  I didn’t know what Renee was going to do.  I couldn’t predict the future, and I believed Renee when she said she was going to do the best job for Mom, and that she was going to make sure we were all well-informed of every decision she makes. 

I don’t mean to be picking on Renee.  I’m sorry to keep bringing it up.  I know in her mind she thinks she’s doing an excellent job.  I sometimes wonder though if she is also beating herself up for the decisions she’s made.  I wonder.  I know she loves Mom just as we all do.  It’s just that we are so different in our beliefs.  I do know that Mom would be furious with her for some of the things she’s done, and on the same note, she’d probably be furious with me for letting it happen. 

All of that is in the past and the only reason why I am bringing it up now is that I have often wondered what I could have done differently.  Was there something I could have done to save our family and to grant some of those wishes Mom had?    

Kathy and I talked about some of these things on the phone the other day.  She’s so easy to talk to, and so is Annie.  Thank God I have them to talk to.  I asked Kathy if she ever calls Mom.  She lives a distance away from her and only travels to see her about once a month.  She said, “Oh no, Mom can’t talk on the phone anymore”.   I don’t even need to say where she heard that from but it’s the same person who told me that.  The thing about Kathy and Lynda is that they hear that and they automatically believe it to be true without even questioning it.  That’s where I am different.  I will try anyway, and when I do that it appears that I am challenging ‘authority’, meaning, ‘Renee’.

If I believed what Renee said, I wouldn’t have known that I can talk to mom on the phone.  If I tell Renee that I want to try to talk to mom, she gets mad at me.  That’s the problem we have with each other. 

It’s sad that Kathy believes that Mom can’t talk on the phone anymore because she is missing out on hearing Mom’s voice and having those sweet, touching moments with her.   Mom is missing out on hearing her daughter's voice, too. It’s her choice though if she doesn’t call and monthly visits are enough for her. 

I live too far away from my mom and I couldn’t bear to not have any contact with her between visits.  I can only get back to Illinois about every three months.  Just hearing her voice is all I need to feel comforted.  She used to only hold the phone to her ear for about 5 minutes before she would set it down, but for some reason the past few months she has been keeping that phone to her ear for 30, 40 and 50 minutes at a time!  I truly believe that she needs that comfort, that connection with me, with anybody who is on the other end of the line.   Otherwise she just sits in her chair, day after day, with hardly no visitors.   Loneliness is a feeling even Alzheimer's patients can feel.  

Mom’s two caregivers quit and now there is a new caregiver.  She gives Mom the phone and then leaves the room, so I have to do my best to keep her engaged and on the phone.  Somehow I’ve figured out how to do that.  She is better on the phone when no one else is in the room anyway.  Her phone skills are definitely not what they used to be, as her attention span, vocabulary, and communication skills have declined considerably.

Every time I talk to Mom I sing ‘You Are My Sunshine’ to her.  She used to sing it with me but not anymore.  The other day I sang it to her and I heard her crying.  I said Mom don’t cry, I want you to be happy, and she said she didn’t know what was wrong.  I hate that when she says that.  My mom knows there’s something wrong with her.  I think she has things she wants to say but she can’t get the words out.  It literally breaks my heart.

Once in awhile Mom says something that shows me that she is still that caring Mom she always was.  She asked me the other day how I was feeling.  I thought that was sweet.  I usually bring up things that I feel that she will remember, that are embedded in her mind.  She’s forgotten so much.  She did choke up when I mentioned her great grandson’s name.  She does remember that boy, and the feelings showed. 

I’ll be going to see my mom soon and I already know she doesn’t know my name.  She says my name sometimes but she doesn’t know that’s whom she’s talking to.  I believe she feels a familiarity with me and she feels comforted by my voice.  Kathy said that Mom doesn’t seem to know who she is anymore when she goes to see her.   Times are going to get harder. 

I know that deep inside my mom she will never forget us.  She has emotions inside of her that she can’t express but I can see those feelings of tenderness in her eyes.  We are a part of each other and never to be separated.  She senses that and is comforted. Mom will always love us until the day she closes her eyes and takes her last breath.  I believe that, even if she looks at me like I’m a stranger, she will know me deep in her heart.  I am comforted in that.  She will take with her all the love and wonderful memories of her daughters and her grandchildren, whom she loved with all of her heart and soul, and they will follow her in death.  We will have all of that love and those memories in our hearts too, so we will never be parted.   

"A mother is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts.”