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 74: My Mom Is An Angel in Heaven

I don’t even know where to begin to describe the past three weeks.  Oh, how life changes in an instant.  I always said life is precious and you should never take it for granted.  I started this blog post a couple of times and just couldn't find the words to express my pain and heartache.  I will try again.  I am in mourning and grieving the loss of the most wonderful mom I could have ever had.  Blogging doesn't seem important now.  I just need to tell you all that my mom is gone.  She is gone.

I flew back to Chicago on June 27^th for one of my regular visits with Mom.  I was feeling pretty good about things for a change.  On June 30^th I was sitting on the deck of the group home with my mom.  We were enjoying the beautiful sunny day.  I looked up to the sky and saw this cloud, in the shape of a heart.  I felt like this was a sign that everything was going to work out.  Everything was going to be ok.  Plans were being made to move Mom back to her hometown and the meeting with my sisters was finally going to happen.  The next day, on July 1st, all of my sisters got together and we visited our mom before we had our important meeting.  Annie arrived late so she wasn’t with the rest of us when we visited Mom, but she went to see her after our meeting.  She said she walked in and Mom said, “Annie!”  Annie hadn’t been to see my mom in six months.  Not that she didn’t love her, she was just having a hard time accepting everything Renee put us through.

Mom seemed tickled to have us all there and she appeared somewhat sad when we said goodbye.   We girls went to a restaurant to have our family meeting to discuss what to do with our mom now that her money was about gone.  There we were, all five of us sitting down and talking.  Finally!  We got along with each other, though I have to admit there was a little tension and apprehension.  After all, it had been four years since we ALL sat down to talk.   We came up with a plan for the next phase of Mom’s care.  After considering the possibility of me coming back and hiring help and renting an apartment for us, it was agreed upon that Annie was going to bring Mom home to live with her in August.  She has her husband and daughters to help her.  I was so surprised that Renee agreed to it, but we were all facing the only other choice we had, which was Mom going to a nursing home with a Medicaid certified bed.  None of us wanted that.   I think Renee finally realized that being with family was better than that option.  Mom was finally going home.  I felt good about our meeting and reconnecting with my sisters. 

The next day during my visit with Mom, I told my mom that she was going to go back home.  She didn’t fully understand, but when I told her she was going to get to see her great grandson more, she did understand that, and she got choked up. Things were looking good.  Mom was doing as good as could be expected.  She was still recognizing her daughters, though she couldn’t say everyone’s names.  She still called me Lizzie.  Mom even let me give her a foot massage.  I was surprised to see how pretty her feet still looked.  I sang You Are My Sunshine to her everyday and held her hand and told her I love her many times during my visits that week.  Mom often told me she loved me back, though sometimes she would just say, “Good, I’m glad.”  Or, “I know you do.”  We had our usual golden moments, when Mom said something so meaningful, just out of the blue.  I am so glad I took notes and have a record of those meaningful things she said.  I took pictures and videos, and thank God I did a lot of that.  The last video I took of my mom was so cute.  She was smiling, laughing, and whistling.  Then at the end of the video I told her I love her and she said, “I love you, too”, with a smile on her face and that endearing look of a mother’s love.   I wish I could post that video right here, but I am still wanting to protect the privacy of my family. 

On July 5^th, I arrived at the group home and I could hear Mom whistling in her room.  Whistling and whispering were her new things.  We had an hour together.  It was to be the last hour that I could share beautiful moments with my mom.  The last time I would hear her voice and hear her say she loves me, and the last time I would see her beautiful blue eyes.    I fed her lunch during that hour.  She ate a jelly sandwich and I gave her some chocolate afterwards.  She chatted with my son on the phone from California.  Then, everything changed.  An aide arrived and took my mom to the bathroom for her bath.  I was in another room talking to my sister on the phone and I turned around to see the aide raise my mom from her chair.  

In an instant, life as we knew it changed.  My mom went into the bathroom a whole person, and she came out about 20 minutes later with a broken body.  She couldn’t walk and she was bent over and trembling.  I rushed to the bathroom and saw her like that.  Something happened in there.   The aide said she needed help and I called out to the caregiver to bring the wheelchair.  They put mom in the wheelchair and took her back to her room and then put her in her chair.  The aide said nothing to me or anyone else about what happened.  Mom said she hurt and the aide said she’s never seen my mom like that.  

After the aide left, it didn’t take long before I realized my Mom was really hurt.  She was clearly distressed.  Not knowing the severity of her injuries, I tried to calm her down and reassure her that everything will be ok.  Mom was making comments that she didn’t like the aide and that she couldn’t move her arms and that it hurts.   I felt up and down my mom’s arms and noticed she had a hard lump in her left arm.  I didn’t know it was broken.  I thought it was a pulled muscle, maybe.  I just had no idea.  The two caregivers there put cream and an icepack on it.   One of the caregivers was a nurse for 30 years.  Mom’s arm began bruising in her armpit area and down the inside part of her arm.  Finally, after repeated attempts to reach Renee, she showed up.  Several hours after the incident, Mom was transported to a hospice hospital, at Renee's direction, and four days later she was dead. 

Not only did my mom suffer a spiral fracture of her humerus on her left arm, but the next day they found that her left hip was broken too.  The doctor said she was too weak to survive these kinds of injuries and surgery was not an option.  At first Renee was talking alone to the nurses and doctors, but she finally let us all in to hear what they were saying.  She didn't need to be secretive anymore.  I couldn’t believe my mom was going to die.  Mom was put on a very low dose of subcutaneous Morphine, which the doctor said was kind of like a vicodin.  I asked why she won’t wake up and the doctor said, “because your mom is dying.”  Eventually they had to up her dose of morphine because Mom was in too much pain. 

I stood at her bedside and watched the life go out of her. Was this really it?  Was this how she was going to die?  It wasn’t going to be a peaceful death either, because she was hurting!  It wasn’t fair!!!  I watched her wince in pain and I saw the fear in her face.  She tried to say something to Renee and me.  We couldn’t understand her and she seemed a little frustrated as she repeated herself.  We could not make out what she was trying to say. Maybe she was trying to tell us what happened to her.  Mom couldn’t eat, not even ice cream.  God, that hurt to see my mom like that.  I could hear her tummy growling.  She was starving, but she was dying, too.  I could hardly eat.  In fact, it was days before I could eat anything without crying and feeling guilty.  I just couldn’t eat when my mom couldn’t eat.

My sisters all gathered together and some of us spent the night and slept on couches.  We took shifts holding our mom’s hand.  Mom squeezed our hands and we didn’t want let go unless there was someone else there to take over.  We didn’t want her to be alone or to be afraid. We wanted to be close to her and we all assured our mom that we love her and always will.  All of us took turns saying what we needed to say.  We told her that we are all together and we are all good, and for her to not worry about us.  We said we’ll take care of each other. The doctors had told us that she can hear us even if she can’t respond.  We made sure she knew we loved her.  

Towards the end it was just awful.  By then several of Mom’s grandchildren were there.   Annie arrived late, but she made it in time.  She got there after the nurses moved mom to her final resting position.  They placed her on her side so that her breathing would be easier.  Two chaplains had paid a visit on that last day.  Prayers were said, tears were constant, though we tried not to let Mom hear us cry, and Mom was slipping away fast.   We didn’t want her to die but it was too painful watching her die that we just wanted it to end.  But how could we survive without her?

The chaplain told us that she may want to go alone.  Mom knew we were all in the room with her, once Annie finally arrived.  Mom even tried to raise her head when she heard Annie's voice.  Mom was a very private person and she cared very deeply for her family.  I think when my mom knew we were all there, that’s when she was ready to let death claim her.  We all took turns saying goodbye and telling her how much she means to us and that it’s ok to go now so she doesn’t have to be in pain.  I told Mom to not be afraid.  Her body was trembling.  I said Jesus is waiting for you, Mom, and we will be together again one day.  I told her we will take care of each other until we see her again.  I told her we will never be apart, that we will keep a piece of her with us and she will take a piece of us to Heaven with her.  

It was just too painful to watch her as she was showing all of the signs that the end was near. The nurse said Mom was semi-comatose.  We reluctantly all left the room, in case Mom wanted to die alone.   The chaplain stayed with her for awhile.  I went down the hall to call my son.  A few minutes later my niece ran to get me and she said, “She’s gone.”  I ran down the hall, as I saw my nephew running to get his mom, and others running into my mom’s room.  We were all there within seconds. She was just laying there, lifeless, with Annie holding her hand.  Annie had slipped back in the room and she was there when Mom took her last breath.  There was no more struggle to breathe.  She was free from the pain, but our pain was unbearable.  I dropped to my knees and held on to her and cried MOMMY!!!!  I was a little girl again, who needed her mommy.  Everything was so surreal.  The crying, everyone crying that awful cry when someone you love dies.  The chaplain was crying, too. 

Mom passed away on July 9th at 10:45 P.M.  My family moved about, going in and out of the room.  Those of us who could, and some couldn’t do it, but those of us who could, sat with her and talked to her some more.  Annie didn’t want to leave her.  She kept rubbing mom’s arm.  I held my mom’s lifeless hands, still being careful not to hurt her broken arm, and I said goodbye to my mom.  I walked out of the room and turned around to have one last look at her, with tears streaming down my face.  I wondered how I could ever survive life without my mom.  My hero was gone.  

Annie told me when she walked into the room our mom was looking straight ahead.  She was already on her last breath.  Annie told her to go to Grandma and Grandpa.  She said they are waiting to take her to Heaven with them.  She said that is when Mom took one more breath and then she stopped.  My daughter said that she had a vision of my grandparents standing behind Jesus, with open arms, reaching out for my mom.  I believe that happened. 

Sadly, an autopsy had to be done on my mom.  I hate that she had to have that done.  We have the preliminary report that said she didn't have a heart attack or stroke.  We are still waiting for the final results but we know what it's going to read.  Mom died as a result of her injuries. We are just waiting.  One thing I am sure of, my mom didn't fall.  She didn't have any bruises on her hip or the outside of her arm. The coroner's report is what everyone is waiting for, though I don't know if I will be able to look at it.    

My mom’s funeral was on July 12^th.  It was a beautiful service with more people there than I ever expected to see. It was so nice to hear the wonderful comments about my mom and see all the people who cared about her and our family.  I prepared a letter to my mom that I read during the service.  It was so hard for me to read it, through the tears, but I did it for my mom.  At the burial site, my sister's son, the oldest of the grandchildren, gathered all of us girls together.  He said that it took our mom a lifetime to build up this family and make it the loving family that she was proud of, and in a period of three years, we dismantled everything she worked so hard on building.  He asked us what he thought our mom would think about that, and he asked us if we are going to let this be it or are we going to work on making our mom proud of the legacy she left behind.  It’s something I always wanted, and I think we all did.  We just couldn’t get it together.  We hugged in a huddle and promised we will make our mom proud as she looks down on us from Heaven.  It will be a struggle at times since there was a lot of hurt and anger, and it will take time to heal, but I am hoping we can pull through this and be there for each other. 

I had to leave and go back to my home in Arizona, and I felt so terribly sad to leave my sisters behind.  That oldest sister in me, nurturing, wanting to comfort, wanting to protect my sisters, is back.  (She never really left.)  I feel for them because I am also feeling that same, awful pain they are feeling.  We describe it as feeling empty. Lynda said she feels like an orphan now that both of our parents are gone. Before I left, I went to a Monument place and picked out a headstone for my mom.  I selected a precious moments angel to go on the headstone.  The angel is releasing five hearts from her hand, representing my mom’s five daughters. 

I know my mom is in Heaven with Jesus and she is whole again.  She is no longer in pain, no longer living with Alzheimer’s, and she is an angel who is watching over her family.   She is not fully gone from our lives because she is living through us, it's just hard to not be able to see her again for the rest of my life.  After the funeral my family went to dinner and we talked and shared stories.  We even laughed.  Yeah, we even laughed, though we cried, too.  All of us girls stood outside in the parking lot after we finished our meal (which by the way, was the first time I could eat without crying), and we talked for another hour.  Just like old times, we had so much to say.  We have lots of catching up to do. We went for ice cream afterwards, and as my four year old granddaughter was licking her ice cream cone she walked over to a young couple sitting there and she said, “My big nana is in Heaven and she is an angel now.”  She is proud of her big nana, and to her, she is happy she's an angel.  She, and my wonderful family and friends are helping me get through this.  I didn't think I could go on, but somehow, some way, I am finding the strength to live.   

By the way, I will continue this blog.  Our journey is not over, so please check back from time to time.   

Blog 73: A Move Is Coming Soon

I'm getting ready to fly back home this evening to visit my mom.  So much is happening in that the time has come that my mom has run out of money and needs to be moved from the group home and placed in a nursing home that has a medicaid bed available.  I knew the time was coming.  It's unfortunate that now that she is in this lovely group home setting, with wonderful caregivers, she needs to leave.  The only good thing about it is she will be going back home, back to Iowa where she belongs, and where she should have been all along.  Back to the place where most of the family lives.  But, now she isn't going to remember most of them.  At least she will still feel comforted by their visits and sense something familiar about them, I hope.

I was included in a conference call a few days ago that had Renee, Kathy and Lynda on the other lines. Annie was not present for the conference call.  Renee told me that mom needs to be moved out of the group home and she found a place in Iowa that has a bed available.  The problem is, mom is no longer considered a resident of Iowa, and she needs to be for 30 days in order to qualify for medicaid there.  Paperwork needs to be filled out and submitted and it all takes time.  This was something Renee spoke of doing last year but for reasons I am not aware of, it didn't get done.

Renee said she wanted to know if Annie and I will rent an apartment to take care of mom for the one month interim before medicaid takes over.  She said if I don't, then mom will have to go to private pay until the money is spent down.  I felt like she was asking me only because she is desperate because funds are low and she knows that this process may take longer than a month and she is now wanting my help.  I asked her when I would need to take mom to Iowa and she said within a month.

When I told her that wasn't fair of her to spring this on me at the last minute she accused me of not wanting to do it.  I said that is not true, that I do want to help mom, but it takes time to find a suitable apartment (she suggested getting a furnished one),  and make all the necessary arrangements for securing hospice nurses and other help, as well as securing my home and making arrangements for the move and also the drive up there.   She knew I was coming up there on the 27th.  I'll have to fly back home and then turn around and drive back up.  I have heard her use the term that I come in at the eleventh hour to offer help, but this is exactly what she is doing to me.  Coming in at the eleventh hour to ask for my help.

I called Annie afterwards and spoke to her about this since Renee is too scared to call her.  Annie isn't sure she wants to take on this responsibility of caring for mom anymore, and I know I can't do it on my own.  Mom has advanced alzheimer's disease and requires much more care.  She is so angry with Renee for the way things were handled in the past and she said she knew this would happen.  As soon as the money runs out, Renee would send mom home and not want to have anything to do with being in charge anymore.  I don't know what to think.  I do know that Renee is done, she's exhausted.  She made that point clear on the phone.  She doesn't want to do this anymore and she ended up screaming hysterically on the phone and totally lost any sense of the world at that point.  I felt sorry for her, even though she brought a lot of it on her own by refusing to let me or anyone else help her.

I suggested we get together for a family meeting.  I said now is the time to do it...and how many times have I said that?  Maybe it will happen this time and maybe it won't.  We've all been talking about it, so I'm keeping my fingers crossed.  I want what's best for my mom and for all of us girls.  I hope we can reach an agreement and feel good about coming together as a family.

I'm really scared about what is going to happen to mom.  I'm scared of taking on the responsibility of caring for her, and I'm scared if I don't.  I just really need your prayer support.  Thank you everyone.  Thank you for praying for my family.

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.