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.   

Blog 63: Saying Goodbye Is Never Easy

Well, it was tough saying goodbye to my mom.  That was on Feb. 24th.  It’ll be three more months before I get to see her again.  When it was time to leave, I hugged my mom’s feeble body and told her I will be back to see her soon.  I told her I love her so much and that she is the best mom in the whole wide world.  I kept giving her reassurances, trying to make her feel better, even though I was leaving after so many wonderful days we spent together, and trying to make myself feel better, too.

That last goodbye is a heartbreaker.  I hate it so much.  I walked out of her room and the tears I had been holding back, started rolling  down my face.  I was hurting.  I told her caregivers goodbye and hugged them and thanked them for taking such good care of my mom.  I sobbed and said to them that this is so hard because I love my mom SO much.  I wish I didn’t live so far away.  They told me I can stay there and cry with them because they cry a lot, too.   

On my drive back to my daughter’s apartment I was thinking about what my mom said to me when I walked into her room that morning.  She said, “This is great.”  She was right, it is great.  It’s the greatest feeling in the world to be together and, apparently, she felt it too.  

I thought of some other things she said that made me smile.  She was biting her nails (which she never used to do) and I said she better stop because her nails are getting all jagged and she’ll snag her sweater.  She said, “No, I’m not.  I’m your mom.”  She actually referred to herself as being my mom.  That was huge!  

She said something kind of funny when she got a little irritated.   We had wheeled Mom out to the living room for a change of scenery.  After awhile we brought her back to her room.  Mom does not like to be moved.  She gets scared.   When the ladies set her back in her chair my mom yelled at them to leave her alone as she squeezed one of the girl’s legs.  She looked at the other caregiver and said, “If you don’t stop, I’m going to….(I was waiting to see how she finished this sentence.  She hesitated for a moment, searching for the words, and then she said her famous line) put you in jail!  I had to laugh.  That’s one of the lines my mom had used often, ever since she was diagnosed with Alzheimer’s, but it had been a long time since I heard her say it.  Renee was the one she most frequently referred to when she said those words, but she also said it to me way back when I was living with her and being her caregiver.  

I wrote words and names on paper and Mom recognized some of them.  She recognized her name, my name, I love you, and her address.  She was telling me she wants to give something to somebody.  I asked her who she wants to give something to and she said, “to all of the kids.”  She said, “there’s this place you guys should have.”  I just wish I knew what she was trying to say because she would often say things like this.  She’s got a message to give me but I don’t quite know what it is.   She had mentioned having money a couple of times, and I wonder if she was trying to talk about that because she used to always say she had money saved for us.   After she became sick with Alzheimer’s, we found envelopes of money hidden in a safe in her house.  There were five envelopes, with thousands of dollars for each of her daughters.  She took great pride in the fact that she was saving her hard earned money for us. 

I didn’t see any of my sisters when I was in town.  It’s such a long story, and one that I keep hoping when I turn the page, the story will get better.   It’s not though, so I don’t even want to go there right now.  It’s just too hard to talk about.   I will though, I have to write about what’s been happening. 

Some people have deserted my mom and that makes me sad.  When she asks about them it makes my heart ache for her, when there's very little that brings her joy these days.  She is slipping away and time is critical.  To me it's cruel and selfish.  I guess I just don't understand how a person can claim to care about someone, yet be absent when they are most needed.  They care more about what's good for them.  True colors are revealed during times like this.

Mom gave me some reassurances, without even realizing she was doing it.  She said “Lizzie will make it.”  She shook her head up and down and said, “We’ll make it ok.”  

Yes, Mom.  We will.  I have faith. 

Blog 62: She Still Knows Who I Am and She Loves Me

My visits with my mom have been going so well at the group home. I’ve spent several days with her, and by doing this I have been able to see her day to day changes, mood, level of understanding, eating habits, etc.  I have sort of changed my assessment of her condition from my first visit on Valentine’s Day.

Mom knows me, still.  Everyday that I walk into her room she looks at me and says my name.  I can tell that she really enjoys my company and I love that smile that comes across her face.  I think I make her feel safe and at peace.  She’s been so much more alert and in better spirits since the first day I saw her.  I am so pleased about that.  I feel that I am making a difference in her life by giving her happy moments, and that makes me feel happy. 

My mom can’t walk anymore and spends most of her day sitting in her chair in her room.  I tried to get her to do some arm exercises but she didn’t want to do any of it.  The caregivers told me that Mom gets scared whenever they have to get her up.  She doesn’t like to be moved.  I witnessed her shouts when the hospice aide gave her a shower and the couple of times the caregivers took her out of the room to change her undergarments.  She hates those things with a passion!  But as soon as she’s done she calms down.  Her mood is so sweet and there is no anger and agitation like she had in the past. 

I remember some of the notes my mom wrote for me in the past year, and I was curious to see if she could write anything since I've discovered she can no longer spell words like she used to be able to just a few months ago.   On this first note I asked her to spell her name.  The top marking is the way she wrote her name.  Then I asked her to spell my name and she wrote it over top of the first one.  The second mark is supposed to be the address of our family home, which she can still recite.  

The next day my mom said she wanted to write something.  I guess she remembered writing the day before.  I got out a notepad and she started making a bunch of 8's on the top.  I asked her to write a 7 and she did a row of 7's.  Wow, I was surprised to see that.  Then I asked her to write her name and the squiggles underneath the 7's was how she wrote her name.  She did better at it this time.  I wondered, too, if she had her glasses on, would she be able to see how she's writing her name? 

My mom is in the hospice program now and I have had an opportunity to see some of the people who work with her.  I met the nurse, pastor, and nurse’s aide.  I’m glad I have been able to meet these people and see how Mom interacts with them, and they with her.  Aside from the two women who care for and live in the group home, they are the ones she sees the most, other than my sister and her kids.  

A caregiver from another group home came by to visit.  Mom was in that group home for only a couple of weeks in December, but they didn’t have a private room for her and her behaviors were upsetting her roommate, so she had to leave and come to this place, which had a room for her.  She told me Mom was very agitated there but her new meds have helped considerably.   I was thinking that my sister would have her neck for telling me this, even though I didn't inquire as to what meds she was given, because she doesn’t want anyone discussing my mom’s health, medicine, or any issues at all with anyone but herself.  I will address that issue in an upcoming post.

I’ve spent some time visiting with Mom’s caregivers and they are wonderful women.  Both of them seem to be so caring and patient and they said they love my mom.  I am so relieved to have them take care of her.

Mom has two dolls that she holds and fidgets with.  I have come to realize that she doesn’t think of them as real babies.  I was relieved to discover that.  She knows they are dolls but she likes having them in her lap.  The girl doll she referred to as a boy last time, is now a girl.  I did notice some odd behavior in that she tries to pull the lace off the girl’s dress and she twists and tugs at the leg or arm to try and ‘open’ it.  She’ll try and try, then give up, saying she just can’t get it. 

I wish Mom had her glasses.  The ladies there said they’ve never seen them.  I don’t know why my sister doesn’t have Mom wear them anymore.  Mom can’t see what’s on the television and she sees shapes of things in another room and wonders what it is.  I even held up two fingers and she couldn’t see them to count them.  That’s another thing I can’t ask Renee about because she will get defensive and mad.  So, I just don’t say anything or ask anything anymore.

There’s been several times that my mom seems to have the expression on her face like she doesn’t understand why she feels the way she does.  It’s hard to explain, but there is something in her face that says WHAT’S WRONG WITH ME?   I don’t know how much she understands of what’s happening, but my guess is she doesn’t understand any of it.  She never did before, either.  She never admitted she has Alzheimer's and she denied it when it was brought up to her.

As I stated in my previous post, Mom can rarely put complete sentences together.  She can’t formulate her thoughts and say what I think she wants to say.  She forgets before the words come out.  When I ask her something I can tell for a brief moment she understands.  Then it’s gone.  When she says something meaningful that I don’t want to forget, I jot it down.   I hang on to those words like it’s the most wonderful or meaningful thing I’ve ever heard. 

Here’s some of the things she’s said…

I feel so lost right now…I can’t do this anymore…This is a world isn’t it?...We are going to get a beautiful house before we are done…I have more fun with you…You are so beautiful…Lizzie, I am so proud of you…Lizzie, did you know they were going to take you?…I don’t think Lynda and Kathy will hurt.

Mom's appetite seems to have improved from a couple of months ago. Back then I was afraid we were losing her because she just would not eat anything.  Thank God she is eating now.   She's always liked an occasional Pepsi and potato chips as a snack and I promised her I would bring some the next day.  When I did, she just lit up.  She drank the Pepsi and said, “This taste is beautiful!”

When I was getting ready to leave the other day Mom said to me, “Just keep coming.”  I told her I will always keep coming to see her.  I reassured her every day that I left her that I will be back tomorrow and we will have fun! One day while I was sitting by her she said, “Lizzie will go home, and then I’ll say no Lizzie, and tell her I like her.”   There is so much meaning in some of the things she says.  I told mom I am not going anywhere.  I am going to stay right here with her.  I don’t know how I am going to handle my last visit before I head back to Arizona.  That is going to make me break down for sure. 

Mom asked me if I was afraid.  I said no and she said, “Well, that’s good.” I asked mom if she is afraid and she said yes.  I asked her what she is afraid of and she said she didn’t know.  That is her usual response.  Other times I’ve asked her if she is afraid and she would answer, no.

I don't want my mom to be afraid.  That is the most saddest thing I can think of.  I want her to feel safe and loved.  I prayed with her a couple of times.  It made me feel good and gave me some assurance that God is not going to forget about my mom.  

I am always touching my mom, holding her hand, rubbing her arm or back, or kissing her cheek.  She never was one to like someone coddling her but she doesn’t seem to mind now.  I will tell her several times a day that I love her and she will respond that she loves me, too.  I told mom you can’t ever stop saying it, and she said, “Never, never, never.”

Mom also touches me a great deal.  She looks at my hands and runs her fingers over my fingers and palms.  She inspects my rings and bracelet.  She picks imaginary lint off my clothes.  I say imaginary because she can’t see it without her glasses, but she must assume it’s there. 

One day I was typing on my laptop, taking notes after Mom drifted off to sleep.  I looked up at her and saw her sweet face, her eyes were open, looking at me with such an endearing look.  I sensed concern but also saw love.  I felt that she was trying to take me all in.  Maybe she was thinking she is going to be gone soon. Maybe she was thinking she is going to forget me and she doesn’t want to let that happen.  Maybe she was wondering at that moment, who are you? 

It reminded me of the time my Grandma gave me that look.  I was 23 years old, and she was dying of cancer.   Grandma came to my house to help celebrate my daughter’s second birthday.  She was weak and she layed on the sofa to rest.  When I looked at her from the chair I was sitting in beside her,  I noticed that her eyes were fixated on me.  I didn’t know how long she was looking at me but I sensed that she was taking me all in, knowing she was dying and going to miss me.  My Grandma was my mom's mom and she was a wonderful woman.  

Mom enjoys talking to her grandchildren and great grandchildren on the phone.  We keep the conversations short and I help mom with the phone, and I think it’s so important for her and for my kids to be able to share these moments with each other.  When my mom tells them that she loves them, it makes them feel so good.    

Every once in awhile Mom will shoot out a name from nowhere.  She mentioned my ex-husband and said his name more than once on two different days.  She said her great grandson’s name and choked up.  All she said was his name.  That’s all.  She mentioned an ex-boyfriend of mine and said she hasn’t heard from him.  Other names came up too...her granddaughter, her mom, dad, sister and brother-in-law.

I got out my laptop and showed her pictures and videos of the family.  She smiled and seemed interested.  I think it’s so important to do that in order to help keep Mom’s memory of her loved ones alive as long as possible.  Mom was able to say some of their names and if she couldn’t say the name, I could tell she remembered who they were.  She tried to pull the name from her memory but just couldn't do it.  

When I showed her pictures of her when she was younger she kept saying, “That’s Lizzie.”  She said that every time.  I guess I must look like her when she was younger.  She recognized a picture of my dad around the time when they met, and she said his name with enthusiasm.  But she didn’t recognize older pictures of him.

I took more videos and pictures of mom and I know I will cherish these always.  I will see my mom two or three more times before I have to leave to go back to Arizona.  My next trip to town won’t come soon enough.  I am already feeling sad about leaving her.