Blog 54: Fix You

Dear Mom, 

I had to leave you.  I had to go back home.  This time it was harder than ever to say goodbye.  I know that I won’t be able to talk to you on the phone, and I have no idea how long it will be before I am able to hear your beautiful voice again.  The nursing home can't take calls for you and even if they did, you really don’t know what to do with the phone anymore.  I will have to rely on family members to call me when they are visiting you, and most of them don’t live that close to you, so I will just have to wait for that phone call, and hope it comes. 

That phone call won’t come from Renee, Mom.  I guess we will never see eye to eye, and I know if you knew what she was doing to our family you would certainly be very disappointed in her.  When I texted her to ask how you are doing, she ignored me.  Then the next day I asked again.  She texted back and said she has everything under control and to stop asking.  She said 'we are done'. You are my mom and I want to know how you are doing.  She is my link to you since she lives near you and sees you the most.   I suppose it's going to be days or weeks before I will hear anything.  I can't call you when I want.  I just have to be quiet and let Renee contact me when or if she wants to.  When she hurts me like that,  it affects my whole day.  I can't stop crying...I can’t do anything!  I am lost.  I know, Mom, that you know I am trying, and I am the only one who is.   It's just so hard to talk to her.  You know how she is, Mom.  You especially know, because she always gave you a hard time.  

Mom, when I was with you, I felt bad that you were so scared when the nurse and I tried to change you.  You looked at me with such fear as you dug your fingers into my arms, squeezing me til my arms hurt, begging and pleading with me to help you.  You don’t understand that what I was doing was helping you.   Your granddaughter and her boyfriend were waiting outside of your room while you shouted at me to help you.  That must have been hard for them to hear, and my heart ached for you because you wouldn’t want them to see you like this, you wouldn’t want to live like this.

You told me you don’t want to be mean to me.  You aren’t being mean to me, Mom.  You are scared and you are fighting because you don’t want to live like this.  You want to be left alone and do things on your own, even though we know you would never survive if that happened.  You always were a fighter and I’m glad to see you fighting still, as hard as it is to see it.  When you stop fighting is when I’ll really worry. 

When I was visiting you Mom, you were suffering with a urinary tract infection.  The nurses told me that they need a urine specimen to treat it.  They were not diligent in taking care of this the whole two weeks I was there.  Renee was too busy with work to follow through.  I finally, nicely but firmly, spoke to the third nurse about it before I left, and told her that I know UTI’s can cause delusions and a lot more confusion for dementia sufferers, and they need to do something to get a urine sample and start the antibiotics.  She said they were going to put a catheter in while you were sleeping.  If they did, I’m sure you were very scared.  I’m sorry, Mom.  If they finally treated your infection, maybe then you won’t be ‘seeing’ mice crawling around in your room, cows stepping on everyone’s feet, your great grandson Kevin in a coffin, kids on railroad tracks, and thinking the waste-basket is the toilet.   I remember when Dad had a UTI and he was seeing things crawling on his walls.  When the infection was treated, he was a new man.  I’m sorry, Mom.   It’s not your fault, I wish I could fix you.

I hope you are eating your food, Mom.  You hardly ate when I was there, other than that time I sat with you for an hour and used every trick I knew to get you to open your mouth and take a bite.  I told you Kevin said he wants you to eat, and that look of love on your face for Kevin, got you to open up and let me put a small spoonful in your mouth.  You managed to eat one-quarter of your lunch.  Other times you wouldn’t eat, no matter what.  Maybe the UTI was causing you to lose your appetite, too.  I hope you are eating more now, because it is a scary sign when you stop eating.

Are you ready to go, Mom?  Do you see what we can’t see and know more than what we think you do?  Has the veil been lifted?  You have been talking so much about your mom and dad and other people who have passed on.  Are you seeing them now?  Are they bringing you comfort?  Are they calling you to come be with them in Heaven?  Rose, your granddaughter thinks so.  She thinks you are hanging on now because God knows we aren’t ready to let you go.  You were so loving to me when I was there visiting you.  More loving than you've ever been since you became sick with Alzheimer's.  You told me over and over again how much you love me.  Were you preparing me, Mom?  God will know when the time is right and He will take you home then.  He will fix you!

There’s a song called ‘Fix You’ that makes me think of you, Mom, and our family, and the struggles we have gone through.  I am going to have someone help me make a video about our family, and I am going to use this song.  Until then, I found this video on YouTube that I liked.  This is for you, Mom.

I love you and miss you so much,

Lizzie  XOXO

Blog 53: I'm Not Going To Forget You

That’s what my mom said to me the other day, right after she told me she loves me very much.  She said, “I’m not going to forget you.”  In her very confused state, with a lot of what she says not making much sense, hearing her say something so meaningful, showed me that God is giving me something back.  He is giving me pieces of my mom back, at a time when I thought she was no longer capable of expressing her love, and at a time where I feel we are losing her.  I believe He spoke to me through my mom and He helped her say those words, because she often can’t express herself the way she wants to.

My mom has shown her love to me so many times over the past two weeks that I’ve been here visiting her.  I was so wrong to state in a recent post that Alzheimer’s-Dementia has stolen her ability to show love.  With God’s help (and I do believe it is God, because He knows how much I need this) she put her arms around me and hugged me every day.  She never really was a hugger…always complained that we had hairspray in our hair, so she would pat us quickly and then be done.  She hugged me so tight the other day that we almost fell over on her bed.  Both of us laughed.   A new thing she does now is she leans her forehead into mine and looks into my eyes.   As our blue eyes meet, I could see the pain and despair in those beautiful blue eyes, but I also saw love and happiness that I was there with her, at that moment.    

Mom holds my hand and lets me pray with her.  She has said things like, you are so good…you help me all the time…I’m glad you came here…don’t ever leave me…Lizzie, I love you so much…and the most touching and meaningful words…I’M NOT GOING TO FORGET YOU.  I get choked up just thinking about it, and I will never, ever forget that she said those wonderful words to me.  Of course I told her I will never forget her, too.  

Mom cried when I called her great grandson, Kevin, to talk to him.  She was so happy to hear his voice.  Mom also showed her love to other family members when I called for her to talk or do face time with them.  She does still show that she loves us!

Here is my mom talking to her great granddaughter.

I bought Mom a prayer bear, and when you squeeze her tummy a child’s voice says...

Now I lay me down to sleep, I pray the Lord my soul to keep, may angels watch me through the night, and keep me in their blessed sight.  Amen  

Mom loved it and wanted to play it over and over again, and then she fell asleep holding the little bear.  I was choked up and I couldn't hold back the tears as we left her room and drove home.  

Blog 52: This is Alzheimer's In Its Full Blown Horrible Reality

I’ve been in town visiting my mom this past week.  The first day I saw her I was so surprised by the visible decline.  After observing her behaviors, I’ve been wondering if part of this could be attributed to a change in medication, since she was recently released from the hospital for aggressive and combative behavior.  I’m afraid to even ask my sister Renee, because she gets so defensive over anything I ask her.  I am assuming they’ve changed her medication and it has caused some of this.  The aggressiveness appears to be gone, so I guess you trade one thing for another. 

Mom would talk about things that made no sense….like, her great grandson (whom she practically raised) was in there with the pigs, and why didn’t I save him?  She was extremely worried about him and I had to reassure her over and over again that he was in school and he is safe.  Everyday that I went to see her she would say something about that and she needed my reassurance that her great grandson was safe.  It made me wish that he would come see her more often, but it's hard when he lives 180 miles away.   Mom would walk down the hall, holding my hand, and think that every door along the wall was the way to the outside.  She would have a look of sadness to find that it only led to another resident’s room.   She played a game of Yatzee, and when she had the dice, she shook it in the cup forever, and wouldn’t throw the dice.  She did a little dance as she stood at the table shaking the dice, making faces, and seemingly irritating the lady who was in charge.  That was slightly funny, actually.  Once she was seated at the dining room table, you couldn’t get her out of there, even after the other residents were done eating and back to their rooms.  She sat in there one day and was fussing with something in her lap.  I walked up to her and saw that she had her tennis shoe in her lap and she was trying to lace it and had it all tangled and knotted up.  Mom wouldn’t hardly touch any of her food.  One day she had cherry pie, but she wouldn’t even take a bite.  She always loved pie.  I noticed several of the residents were digging in to the pie before eating the main course, and at this point, why not.   I would too.

Other changes that were very obvious are that Mom walks very slowly and needs assistance, her posture is really bad, and she makes weird facial expressions and bites her fingers,  and then tries to bite mine.  She shouts out things when she gets the urge, then laughs.  She wears adult undergarments now and it doesn’t even seem to bother her, and when she does use the bathroom, her behaviors are very odd.  I’d rather not go into detail about that.  At one point when I was helping her in the bathroom she looked at me and said, "You don't want this."  That was one of her moments of clarity.  I told her that someday we are all going to get old and we will be there.  Many times her sentences don’t make any sense.  Mom can still spell words, though not as accurate as a couple of months ago.  She is also not as eager to play the spelling game.  Her face has the look of Alzheimer’s.  Her eyes are drooping, her skin is sagging, and she has that blank stare, though she still smiles now and then.  I took some pictures and videos and recorded her voice, and all I could think of was, this is Alzheimer’s in its full blown horrible reality.  For the first time I could picture her near the end, slumped over in a wheelchair, speechless, lifeless.  Will she be that way the next time I visit?  Or will it be a year from now?  God only knows.  I have nightmares about that.

I just wanted to touch my mom.  I wanted to feel her aliveness.  I know that sounds weird, but I needed to.  I needed to let her know how much I love her.  I rubbed her back, her legs, her shoulders and neck.  I ran my fingers through her hair, and I hugged her many times.  I needed the hugs, too.   I went with her to the salon in the building to get her hair cut.  She wanted me with her, right by her side.  She always wanted me by her side.  She told me not to leave her, and she said that more than once.  She said she was afraid.  Mom asked me for ‘one of those pills’ and she said she wouldn’t tell anyone.  I wonder what she was asking for. 

I went to ‘church’ with Mom in the dining hall on Sunday.  I sang some songs, and I held my mom’s hands as I sang.  She didn't sing.  It felt like we were really in church, even with all of these elderly residents sitting around the tables in their wheelchairs.  She wanted to leave early and go to her room to lay down.  As she drifted off to sleep, I sat there staring at her, with old people singing Bible hymns across the hall.  It was a deeply emotional time.  I kissed her cheek and walked out so she could sleep, and I left her there. 

Throughout the week, even though Mom was very different, she did have her moments of clarity.  I took notes and wrote down just about everything I could remember from my visits.  I think I could publish a book on just this past week.  She remembered my name and said it each day I came to see her, though she would often call me Renee.   I don’t know if she knows I’m her daughter, but she was able to name all of her daughters when prompted to do so.  She also remembers her house address.  I got her saying our names and her home address on video, and I asked her what is the most important thing that she wants and she said, "to be happy."   I got that on video, too. 

One day Mom was lying on her bed and I asked her if she could have anything in the world right now, what would it be.  And she said, “I’d get out of here.  I’d walk down the sidewalk and get out of here."  I asked her where she’d go and she mentioned the town she grew up in as a little girl and the town where her house was.  She said she wants to go back to her house.   That made me sad because she had a look of defeat on her face.  She knows that she will never go back.  She told me she was glad I came and she even volunteered a couple of hugs, where she actually put her arms around me.  Mom also told me she loves me very much, without me saying it first.  She told other people there that I was good to her.  I was happy that the staff at this facility was more than willing to share information with me and ask me questions about mom, unlike the assisted living place she was in before.   It made me feel like I was a part of her care.  

I felt like we were able to have some mother-daughter moments when she was lying down.  She would just look off across the room and I was wondering what was going through her mind.  What do people with Alzheimer’s think about?  I wonder.  I asked her at one point what she was thinking about and she said she was thinking about her mom.  She was talking about her a lot that day.  The physical therapist was in the room talking with us when Mom asked me if her mom was still alive.  I didn’t know what to say.  I said no.  She was really affected by that.  I felt terrible.  I explained to her that she took care of her mom and that we were all with her when she passed.  She didn’t remember.  I tried to distract her with playing hand games, as that seemed to always please her.  She laughed and got her mind off of her mom, but surprisingly, she came back into her thoughts and she had tears in her eyes and said she misses her.  I told her that her mom is in Heaven and some day we will all join her.  Then I mentioned that it will be awhile before she or any of us goes there, and she said, “I hope so.”  After about a half hour she didn’t bring her up again.  But I wonder if she was still thinking about her mom.  I didn’t want to ask. 

My daughter had wanted me to talk to my mom about the Lord and to pray with her.  Mom and I used to pray together when I was staying with her in her home three years ago.  Gosh, I had to think about that, was it really that long ago?  I would hold her hands and she would repeat after me.  That prayer time was our nightly ritual, and it made me feel so good to go to bed after having this prayerful time with her.  I think it made my mom feel more peaceful, too.  This time she didn’t repeat after me, but I said a prayer while holding her hand.   Before that, I talked to her about the Lord, and I feel somewhat at peace that God is looking out for her in spite of what this disease is doing to her.

During another one of our talks, which usually happened when Mom was laying in her bed, and in a more relaxed state, she asked me where I live.  I said I live in Arizona.  She said she wants to go there.  I told her I wish I would have never moved.  I said I wish I would have stayed in Iowa.  She asked me why, and I said that I should have never left her.  Then I asked her something I really needed to know…was she mad at me for moving?  She looked at me, and I swear she sounded like she always used to before she got sick, and she said, “No, Lizzie, I’m not mad at you.”  She said it like a mother talks to her daughter when she wants to reassure her.  I could tell she said the truth in as much truth as she can show.  In an instant, a weight was lifted off my shoulders. 

It is my understanding that this nursing home is a temporary place for Mom.  Medicare is paying for it for a couple of weeks.  I have been making phone calls to other locations in Iowa, trying to find a place for her back home that has Medicaid beds in a memory care unit.  I have offered to take mom and Annie has offered to have Mom come live with her.  Renee says NO.  My daughter and I saw Renee and her girls the first day we went to see Mom.  I hugged my nieces and I even hugged Renee, even though we have not been getting along.  We all talked and got along that day.  Text messages have been sent since then but she refuses to talk to me on the phone.  She says she wants to give guardianship to me.  I said I need her to give me conservatorship if she wants me to take guardianship.  She has a problem with that.  It’s a long story, and that will have to come on another blog post.   But one thing is for sure,  I will not give up on my mom.   

Blog 51: The Best Gift I Can Give My Mom

I just left California, where I had a wonderful week with my son, daughter-in-law and grandson.   We celebrated my grandson’s third birthday.  He is a very happy little boy who is so inquisitive and soaks up every new thing he learns like a sponge.  You can see him study things like shapes and objects, signs, numbers, and things we walk past and don’t even pay any attention to.  

While on a hike, my little grandson fell down a couple of times and it made him cry, but he got back up and continued on.  He could have stayed safe in his jogging stroller but he wanted to walk, even though we told him he might fall down again.  Just like life, you take a risk...and sometimes you fall, but you get back up and keep on going.  

It’s amazing how youngsters learn so quickly, and even with how much they learn everyday, they are able to retain that knowledge and still have room for much more.   Their brains are growing so fast, along with their bodies, and there’s so much more to learn and to look forward to in their futures.   Even though they are dependent upon adults to care for them, in a relatively short period of time they will soon be on their own.

Then there’s my mom, and other people who have Alzheimer’s/Dementia, where all the knowledge they once had stored in their brains is being destroyed by a disease.  They are no longer able to do the things they learned how to do so well.  All of the memories, the things they once knew, language skills, concentration, the ability to comprehend, and even show love, are all gone.   It’s almost like being a child again (yet it's different from that), only now there’s nothing to look forward to except a dismal future.

After leaving California, I flew to Chicago and am staying at my daughter’s apartment.  We will be going to see my mom at the nursing home tomorrow.   She was just moved to a new facility a little over a week ago and I haven’t spoken to her since that one time I was allowed to when she was in the hospital.  That was two weeks ago.   I really miss her, but I was told we needed to give her time to adjust.  

I called Kathy the other day to see if she had spoken to Mom and she said no.  She told me we can’t call her like we used to be able to because the nursing home won’t take calls for Mom like the assisted living center did.  I don’t know if that is true, but I will find out.  If it is, that means I need to come up with a plan, because I can’t go for months without talking to my mom.   Being 1,800 miles away means I need to be able to talk to her and hear her voice on the phone between visits.  I need her still!

Every time I come home I get anxious before I see my mom.  I wonder how much worse she’s gotten, and I wonder if she will remember my name.   Now I have new concerns…what is this nursing home going to be like?  Is it going to be a nice place, with caring and compassionate people who are caring for her?  Old concerns...will I see Renee while I am in town?  Will we be able to get along?

There’s no doubt I have been feeling very alone in my thoughts about my Mom.  Kathy and I talk on the phone every once in awhile and I told her how much I appreciate that we can talk to each other like sisters should.  Our conversations are usually pretty brief, but at least we are there for each other.  Annie and I don’t speak often but when we do we can be on the phone for hours.  I’m glad that I have them to talk to.  I told my daughter to call my sister Renee and apologize for what she said to her after I cried over that last email I received from her.  She did, and I am happy that she is there to support me, just as my other two children are.  

I know that we all go through challenges in life, and many times we are faced with things that almost seem unbearable.  Sometimes everything gets piled up at once and it can bring us down so low that it can destroy our quality of life, and it will, if you let it.  There’s a quote that goes like this…”Sometimes being pushed to the wall gives you the momentum necessary to get over it.”  

I have come to terms with a few things…I cannot change the course of my mom’s disease, she is not going to get better, I can’t save her, and I don’t want anymore drama with my sisters.  I have a life to live, and it is my choice whether it’s going to be a life of bitterness and sadness, or forgiveness and happiness.  I choose the latter.  Am I blissfully happy at this point, right now?  No.  But I am content and hopeful.  I have many blessings in my life and things to look forward to.  Even with this dismal part of my life with my mom’s disease, it is only a part of my life.  I keep reminding myself that the best gift I could give my mom is to live a life of happiness and a life worth remembering.   That’s what she always wanted for her daughters.   Even though it’s been a struggle sometimes, that’s what I’m doing for her, for me, for my kids, and for my grandchildren.  They deserve the best of me.   I deserve the best of me.  Mom deserves the best from her family.  Mom's legacy will live on. 

There's a place at Cornerstone in Sonoma where you can write a wish on a strand of ribbon and hang it from a chain.  All of these ribbons represent someone's wish, one of them is mine.  I have hope that my wish will come true.