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.