Friday, February 22, 2013

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.   

Friday, February 15, 2013

Blog 61: My Visit With Mom at the Group Home

I flew into town and spent the afternoon with my mom on Valentine's Day.  I couldn't think of a better way to spend the day than with my mom, who was the most loving, kind and nurturing person I ever knew.  She loved unconditionally, and always put her daughters first.  She taught me how to love, and because of that, I love her more than words can describe.   That's the way she loved her daughters, too.

This was the first time I had seen my mom since November.  I was very anxious and apprehensive because based on our previous phone conversations, I sensed she had declined considerably.  I couldn't tell if it was just because she didn't have phone skills anymore, or if it was because she actually had become worse.  I just needed to see her to know if what I had envisioned her being like, was really true.  It was.  In fact, she was even worse than what I had expected.

Mom was sleeping in a chair in her room when I arrived, and she had her arms wrapped around a baby doll.  I had suspected she was doing that now based on a phone call I had made to her awhile back.  I know from my volunteer work at a nursing home that a lot of the female residents hold baby dolls in their arms.  When she awoke she looked up at me with sad eyes.  I said, "Hi, Mom!"  She didn't have that happy expression she usually has when she sees me.  I asked her if she knew who I was and she said she didn't know.  I sensed she recognized me and she was trying to find my name somewhere in her memory.  She just couldn't say my name.  I told her I am her oldest daughter and she repeated, 'the oldest'.  I didn't want to tell her my name and I waited to see if she would remember.  After a few minutes she said it.   I could see a sense of relief in her, just as much as I was feeling a sense of relief that she remembered.  The caregiver told me that mom says my name a lot.

I brought mom a small box of Valentine chocolates and a Singing Bear that sings the Lollipop song while she moves her arms in a circle, holding lollipops.  My mom always liked singing toys and cards, but she just looked at it with no expression on her face.  I coaxed mom to eat two pieces of chocolate but she didn’t seem interested.  The caregiver said she eats, but very little.  

I knelt by my mom and talked to her and tried to get an assessment of her condition.  Her Alzheimer’s is winning this battle.  Not like I expected anything differently, it's just so hard to see my mom like that.  She is weaker, her face is drawn, and her movements are slow.  I held her hands and I sensed it made her feel safe.  Her hands were soft and gentle, like they alway were, only weak.  She let me rub her back and run my fingers through her hair and just touch her.  I always want to touch her when I'm with her.  At certain times during my visit, I could have just broken down in tears, but instead I held it together for my mom's sake.

I don’t know how much she understands of what I say.  Her hearing is not very good, and she always had such good hearing in the past.  It seems that as soon as I say something it only takes a fraction of a second for her to forget it.  She will start to answer my question but then forget mid-sentence what she was going to say.  Sometimes I wonder if she knows more than she can express and it frustrates her that she can't put her thoughts into words.  I don't know.

Most of her sentences were fragmented and didn’t make any sense, however I did take a few notes of some of the more memorable things she said.  Mom said, “You know what, I’m very, very, very close...”  Then she didn’t finish what she was trying to say.  I asked her, but she couldn’t tell me.  She also said, "Are they going to bury...that coat?"  And, "I’m going to make it til I wouldn’t die."  

Then out of the blue she said, “When I get old and I’m thinking, Lizzie where are you?”  That got to me.  I wondered what she meant.  I asked my daughter about it afterwards and she said she thought mom was putting two different thoughts together, and the fact that I come to see her often, she remembers that.   That statement and another one she said, really tugged at my heart.  At one point she started to drift off to sleep and she heard me move, which startled her.  She opened her eyes and said, "I just like to be with the girls."  It was like she was dreaming and she spoke of what her dream was, or what she was thinking sub-consciously.  That made me feel sad because all along my mom has always said she wants us all to be together.  And sadly, we are not.  

I took some pictures of mom and me and a video of her.  The pictures didn't turn out so good because mom hasn't a clue how to sit in front of the camera.  She is oblivious to what I am doing.  When I viewed the pictures on my phone she said, "That's you!!"  Then I pointed to her picture and said that's her.  She looked at her picture and said, "I'm so ugly."  I said, "NO, you are not ugly mom, you are beautiful!"  I told her over and over again that she is beautiful, because she is.   

The place mom is living in is a nice house, with six residents and two full-time caregivers.  The women were very friendly and I was pleased with what I saw.  I have to admit I felt a tinge of jealousy that they are the ones who get to spend so much time with my mom.  I know it is a difficult task, but it is one that I wanted to do.  A man introduced himself to me and told me his mom and dad just moved into the house and he actually lives in Arizona, not far from me.  He was very nice and we talked for awhile about our parents.  He comes back to visit as often as I do.  What a small world. 

Mom remembered her home address and the city she used to live in.  I was surprised at that.  She couldn't spell any words though, which she used to be able to do better than the average person less than a year ago.  One other sad fact is that she will never dance again.  That was something she so enjoyed doing.  Now she can't even walk.  I asked the caregivers to get her up so I can see how she walks.  Mom needed them to hold her up or she would have fallen over.  One of the ladies said, "Don't be scared."  And my mom, with all her might, said, "I'm NOT scared!"  She sure didn't have the fight in her that she used to, though she tried to muster up the strength to shout it out.  It was barely audible and her breathing was labored by just taking a few steps down the hallway into the living room.  I noticed she has lost weight.  

When they sat her on the sofa and left the room, Mom looked out the window and started crying.  I reached my arms around her and asked her why she was crying.  She said, "I don't know, I don't know."  It broke my heart.  She cried three different times during my visit.  Just out of nowhere the tears came.  Gosh, I hate this disease so much!  

They put Mom in a wheelchair to take her back to her room after a little while.  That's something Mom would have fought, kicking and screaming, before.  There was no way she'd ever sit in a wheel chair, but she relented and almost welcomed the safety of the chair.  There was no help on her part in getting settled in the rocker when we got back to her room.  It's like she can't even move her body anymore.  I put the baby doll back in her arms and wrapped the blanket around her as I propped her legs up on a pillow.  She snuggled the baby and gently kissed it on the head.  The doll is a girl but she calls it a boy, and he has no name.  

Mom said with clarity, “I’m glad that you’re here.”  I said I’m glad I’m here, too.  I was holding her hand and I told her I’m sorry she's sick, and she said, “Oh, I’m not sick!"  I asked her if she was happy and she said yes.  I asked if she felt good and she said yes.  But to me, she seemed anything but happy or well.  I could see the frustration in that she couldn't figure out what was going on with her.  

I told mom I love her many times and I told her I've missed her so much.  She did respond, mostly, and tell me she loves me, too.  She sounded so much like my mom at those times. It’s like those words are embedded in her mind, never to be forgotten.  

Mom mentioned her sister's name and her brother-in-law.  In fact, she saw another couple sitting at the table and she said that was them.  I told the caregiver that Mom's sister just celebrated her 80th birthday.  She would like to come see my mom but she can't make the three hour drive up there.  Mom mumbled something about her mom and I got the poster board off the wall with the pictures of all of her daughters and grandkids and the family home and her parents.  Mom wasn't able to say anyone's name.  She kept saying my name for my sisters.  She didn't seem to recognize her parents either, or the picture of her as a little girl.  I was thinking after I left that maybe she couldn't see the pictures very well.  She used to wear glasses sometimes.  She hasn't worn them for awhile now.  I will find out why tomorrow.  

There are some things I need to fill you in about what's going on with my sisters.  I have just been avoiding doing that because I had to step back and let things go for awhile and stop stressing about it.  It was just getting to be too much for me and in order to have some peace and happiness in my life, I had to remove myself from the pain.  I promise to give an update soon. 

Tomorrow I will go back to see my mom, and for the next several days I will be spending a lot of time with her.   I can't wait to see her again, and like always, I hope for a better day for her the next time.  This just isn't fair.  But I suppose, life isn't fair.