Blog 66: Song, and 50 Minutes With Mom on Easter

My mom was one of those talented people who could sew, paint, and cook, just to name of few of her many talents.  She made the best potato salad and meatloaf.  I wish I could make it the same but that's just impossible.  Last night I made an attempt to replicate her potato salad for our Easter cookout today, but it just doesn't compare.  I thought about her every step of the way and felt as though she was with me, guiding me in the process. 

I can’t help but think about my mom when a holiday comes around and today is no exception.  I guess I think about her so much because everything started with her.  All of my early childhood memories involved her.  It’s pretty clear she has been a huge influence on my life and no doubt on my sister's lives as well.  My mom was made for us, and we were made for her.   This beautiful song just says it all.  It's called The Story...

 

It was three years ago that we celebrated the last family Easter at my mom’s house.  Much has changed since then.   Her house has been sold, Mom is in an elderly group home now, and her Alzheimer’s has taken much of who she was away and left a weak, feeble body.  This horrible disease has taken it's toll on our family, too.  Here’s a picture of my family in happier times when we were much younger.  This was taken on Easter, in 1965, at my grandparent’s farm. 

I called to talk to my mom on the phone today and got an extra special surprise.  Usually I can only keep the conversation going for about five to ten minutes before she hands the caregiver the phone or the caregiver takes the phone, but this time Mom held the phone up to her ear and we talked for 50 minutes!  The caregiver walked away and left Mom with the phone and surprisingly she held the phone steady by her ear. 

Most of the time the conversation was one-sided and revolved around me trying to get her to talk or answer questions.  She never asks questions anymore so it’s pretty much up to me to get her to talk.  Even though much of what she said didn’t make sense, I’m beginning to understand her language and take from it what I think she is trying to say.   She usually only gets the first part of a sentence out before she stops talking, and I assume it's because she forgets what she was going to say or she is unable to formulate her thoughts.  She did however say some memorable things and I always write those things down.   It's like keeping a part of her with me forever.  I cling to those moments of clarity and meaning in her words.

I must have told her I love her twenty times and each time she said it right back to me. I love hearing those words come out of her mouth.   She couldn’t say my name and she couldn’t name her other daughters.  I tried to help her by starting with my name and going down the line but nothing would help.  She couldn’t say our names today, but maybe she can tomorrow.  I know she recognized my voice and knows me as being someone familiar and I believe she still knows I'm her daughter.  After all, she told me she loves me twenty times today!  I think if I was in front of her she would be able to say my name.  At least I hope so.  

I felt close to mom this Easter because we got to spend some time together, uninterrupted.  This was a wonderful Easter gift and truly a miracle that Mom held the phone for that long.  That hasn’t happened in a very long time.  I needed her today and I felt like she needed me, too.   We got 50 minutes together, time that we both needed, and I’m happy.      

Blog 65: I Miss The Way It Used To Be

When I called for my mom, her caregiver woke her from a nap and handed her the phone.  Mom started crying when she heard my voice.   I asked her why she was crying and she told me she didn’t know.  But I could clearly sense that something was bothering her.  I told her I love her and I miss her and she said she loves me and misses me too.

Throughout our brief conversation my mom went in and out of crying.  I tried to cheer her by telling her that I will see her soon and that her great grandson can’t wait to come see her, too.  That made Mom giggle a little bit.  She just loves the little ones, and talking about them always seems to cheer her up.  

I named everyone’s names and told Mom we all love her very much, and I said I wish we could all hop on a bus and come see her and take her to the park.  She cried again.  I told Mom to be happy and I could hear her caregiver, who was helping Mom with the phone, tell her to not be sad.  Mom kept saying she’s not sad, but her crying indicated to me that she was.  I just can’t help but wonder what is on her mind.  I wish she could tell me.

I’ve noticed a pattern of behavior with my mom whenever she awakens suddenly.  She appears to be coherent right away, and it’s almost like she doesn’t have Alzheimer’s.  She sometimes says things that completely take me by surprise.  She’ll say a complete sentence, or she’ll mention someone’s name that she hasn’t said in a long time.  She usually seems more emotional and nurturing then, too. 

It’s so hard to describe, but I’m wondering if a person with Alzheimer’s has a section of their brain that is protected, and when they are in a deep sleep, this part of the brain is activated.  I’ve seen this type of behavior in my mom many times after she wakes from sleeping.  I wonder if she dreams the way we all do, and then when she wakes up, she almost feels and acts normal until she becomes fully awake, and the reality of Alzheimer’s comes back.  I tried to find some information about this online but couldn’t find anything. 

As far as my sisters…I called Kathy while she was at work the other day, because I knew that was the only way I could talk to her.  She usually doesn’t answer when I call her mobile phone.  I was surprised to hear how happy she was to hear my voice.  She commented on how long it’s been since we’ve talked and I told her she doesn’t answer when I call her.  I asked her if she was mad at me because she never calls.  She said she’s not mad at me, and she explained she has a lot going on in her life and her way of handling things is to keep to herself.  She said she doesn’t call anyone.   I told her I love her and I am always going to be there for her.  I expressed my sadness in not having my sisters to talk to during these difficult times with Mom’s illness.  I said we need each other now more than ever.  Kathy agreed with me, but still, I don’t see that things are going to change.  

I realized after talking to Kathy that the distance I feel from my sisters is probably due in part to the things they have going on in their own own lives.  It’s not about me.  It’s about them.  I need to stop taking it personally, letting my feelings get hurt, and losing sleep over it, even though I can't help but miss the way it used to be.

Blog 64: It's a Hard Knock Life For Us

My sisters and I are drowning even deeper into the abyss.  It’s getting darker and darker as we sink even further down.  I see my sister Lynda's face as she disappears.   She looks scared.  I want to help her, but she’s gone.  She’s a child.  We are all children.  I feel cold and isolated, so alone.  I don’t know where my sisters are anymore.  They aren’t close to me.  Are they here?   I can’t see them.  I am scared.  I don’t see any light, only darkness.   I can’t breathe.  Terror takes over.  Who is going to save me?  Who is going to save us?

I wake up from this dream with a silent cry, full of despair.  A dream that has so many meanings.  My sisters and I are broken and it obviously is weighing heavily on my mind. We have lost all ability to communicate effectively after our Mom’s diagnosis with Alzheimer’s three years ago.    Instead of going through a rough patch, as many families do during times like this, we have managed to rip apart at each other until we are left in shattered pieces. 

Children of the same family, the same blood, with the same first associations and habits, have some means of enjoyment in their power, which no subsequent connections can supply. ~ Jane Austen

It’s the lack of communication that got us here, the fear and unwillingness to talk things over, even if we didn’t agree. I have tried to reconcile but they aren’t trying.  Ever since Alzheimer's made its hard knock at our door, everyone is just letting this disease and it’s ugly demons come in to destroy our family.  This has been the problem all along and nobody is doing anything to stop it. 

We only have one shot at life.  Just ONE.  Is this our destiny?  I don’t choose this.  I see other families that are close, sisters who are what we once were to each other.  It makes me long to have my sisters back.  We are missing out on so much, sharing important events in our lives, our kids’ lives, getting together for visits with Mom and sharing our thoughts and fears with each other.  That’s what sisters are for.   We don’t have that anymore.  I swear, I feel like I’m the only one who is troubled by this. 

                    Who understands much, forgives much. ~ Madame De Stael

What if, God forbid, something should happen to one of my sisters, or me, and we don’t fix this and mend the hurts before that happens?  Then we each live the rest of our lives with regrets.  No chance of ever going back and making things right, or showing how much we love each other.  It will be too late.  I don’t want regrets, and even though I have reached out to them and they aren’t reciprocating, I still will have regrets.   At least I know that I’ve tried.

     Is solace anywhere more comforting than that in the arms of a sister.  ~ Alice Walker

  

Annie and I are the only ones who are talking now.  Texts with Lynda are sparse, I haven’t seen her or Kathy in a year and a half.  Renee and I stopped exchanging emails when they were causing more destruction to our relationship.  I did email her after my recent visit to see Mom and tell her she did a great job in finding this group home Mom is in now.  She didn’t write back.  It seems she only wrote when she had something to argue with me about.  Everyone is shutting each other out.  My daughter is getting married next spring and the only person to offer her congratulatory wishes was Annie.  This whole ordeal is affecting our kids.   Though some of the cousins are still keeping in communication with each other, they are feeling our pain, too.   They have their own pain as a result.

I think I come across as being a strong person, in control of my emotions.  I learned how to do that when I was young.  When I look back at things that happened after my parents divorced, I can see where that might have begun.  Without going into all of that, I just think that the responsibilities that weighed on my shoulders at such a young age, are the reasons for my strong front.  It is just a front though.  I feel every bit of pain and emotion that my sisters are feeling.  I am coming apart at the seams, just like they are.  I care, I understand, I feel.  I’m on an emotional downward spiral, too.  I have shared those feelings and emotions with them but I think they still see me as someone who doesn’t fall apart like they are, therefore I don't get to be included in their emotional whirl. 

             Sweet is the voice of a sister in the season of sorrow.  ~ Benjamin Disraeli

I worry about what’s going to happen when our mom passes away.  Are we even going to be able to comfort each other?  Is there going to be a fight?  God, I hope things get resolved before then.  Everyone is grieving the loss of our mom already.  We are emotionally preparing ourselves for the inevitable.  Even though she is still alive, she’s not with us like she was before.  We don’t have her to comfort us and make things all better.  Mom was our rock, our foundation, and the center of our universe.  We always knew that about her, but none of us really understood how profound of an influence she was in holding our family together, until she became ill with Alzheimer’s and dementia, and we had to face the fear of loosing her.  The decisions that had to be made, and the differences of opinions we had, are what separated us as a family.  Our sisterhood was shattered when the communication ceased.  If you Click here you can read a previous blog post to give you some insight as to what happened.  Blogs 27, 28, 29 and 30 are good ones to read about how things really fell apart with my sisters.  

It is a hard knock life for us right now, but we have to stay focused and try to look at the positives, even though that’s so very hard to do when dealing with this dreadful disease.  Our mom is still with us.  We have beautiful moments with her.  Oh yes, it hurts like hell to see her like this, but it happens to be the cards that she and we were dealt with, and we can’t do anything about that.  We have to hold on for dear life.  We have to embrace the time we have left with her, and the time we have left in this world with each other.  Life is a gift and one that you should never take for granted.   We only have one life on this Earth.  I want to live it well, with all of my family being a part of it.    

The greatest happiness in life is the conviction that we are loved…loved for ourselves, or rather, loved in spite of ourselves.   ~  Victor Hugo

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.