Stealing Mother - Again

Alzheimer's disease steals.  It is stealing my mother from me.  Parts of her remain, but so much of who she was is gone.  The disease steals slowly.  Oh, at first it seems like it rushes off with great chunks of its victims, but that is only because the chunks it steals are the big, most noticeable parts.  In reality, it steals slowly.  It inches away with mere molecules of the victim.  Then one day, you notice that even more of the person you love is gone.

Alzheimer's disease continues to steal Mother.  It has stolen her ability to know us at times.  Yesterday, I was Mama to her.  Usually she finally recognizes me as me, but not yesterday.  I was her mama for my entire visit.  She is the frightened little girl who wants to cling to my neck crying mama.  She is the little girl who wants to hold my hand and look in my eyes and say, "Mama, mama, mama."

Alzheimer's disease has stolen Mother's ability to recognize where she is at times.  As we walked down the hall to her room, Mother stopped and grabbed my arm harder.  "Where are we?"  She was lost in that one hall.  She couldn't recognize her room until she saw her name beside the door.  She continued to walk with me, but her grip didn't relax until she saw her name.  She was frightened.  To her, it was like stepping into the unknown.  She was unsure, but willing to trust me to guide her.  Mother had always been the one to know exactly where she was, which direction she was headed, how far she needed to go. She was never lost.  Now she is lost most of the time.

Alzheimer's is a thief.  It steals, and nothing can stop it.  I hold on to the small pieces of Mother that it hasn't taken because I know that in time, Alzheimer's will steal those too.

Wild

Wild.  The word has many connotations.  Like the flora and fauna in the woods, it can mean untamed, undomesticated.  It can mean acting with abandon or uninhibited.  But it can also mean out of control and unmanageable.  Today Mother was wild in all senses of the word.

Mother looked calm and happy when I walked in her room, but that did not last long. Greeting her and sitting on the edge of her bed, she came at me full force.  She raised up and grabbed my neck and head and kissed me, then pulled me over and hugged and kissed me some more.  She is incredibly strong, and it takes a bit maneuvering to break her grip.  I was finally able to sit up and hold her hand, but here she came at me again.  One wouldn't think that an old woman could get you down and keep you down, but Mother can.  Gently, gently, I got her to relax and let me sit and hold her hand.

A young, male aide came into the room.  Mother howled and cried.  She thought he was her oldest grandson.  I have to say there was a striking resemblance, but she could not be satisfied that it wasn't her grandson.  She cried and cried after him.  I had to finally tell her he had to go to work.

Another resident came into the room and sat and visited.  Mother cried as the old woman told about her first baby being born dead.  Mother became inconsolable, she grabbed me like I might disappear, her grip nearly cutting off the circulation in my hand and crushing my bones.

For over thirty minutes I tried to calm her while evading her grip.  Nothing could get her distracted.  Nothing could tame her emotions. Nothing could help her manage her behavior.  Like a child, she finally wore herself out and was ready for a nap.  But I left wanting to run away from her.  I wanted to get away from the frenetic howling.  I wanted to flee from her iron grasp.

The wild, uncontrollable emotions she had today tear at me.  It is not her howling so loudly that the aides come running; it is not the death grip she can put on my hands, it is the idea that she is so out of control.  She is wild and unrecognizable as Mother.  I wept as I left her.  The wild roller coaster visit has left me exhausted, and I too want to be wild and just run away.

Struggle of Love

I am struggling with deeply mixed feelings this week, and part of my struggle is with guilt.  Always guilt.  The guilt is misplaced, and intellectually, I know that, but emotionally, I still feel guilt.  It is as if I am responsible not just for Mother's care but for her having dementia.  I feel responsible for how she feels knowing that that kind of thinking is senseless.  Nevertheless, I feel it.  My mind wrestles with my heart.

Over the last months several friends have lost their mothers, and even though the pain and sorrow they feel is deep and real, I imagine there is a sense of relief.  I know that my prayers have been that their mothers have been welcomed home into the kingdom of heaven, but I have also whispered a prayer of thanks that their mother's struggles are over.  And therein lies my guilt.

I welcome Mother's smile each time a visit.  Yesterday, when I first arrived, I took her face in my hands and kissed her cheek as I always do.  She grinned and called me by name and said, "Oh, I love you."  It was so sweet.  She knew me yesterday.  I was overcome with joy that she could recognize me and express her love.  I was happy to have that moment with her.

But as we went for a walk in the hall, it was evident that she was having trouble walking.  He left leg and foot were not working well.  He arm was curled and her hand clenched.  Her diaper was full and sagging.  I changed her diaper, but there is nothing I can do about her arm or hand or leg.

Her talk turned to silly jabber.  She howled.  She accused everyone else of having lost their minds and not knowing a thing.  She got upset when another resident had a cookie and wanted one too.  I got a cookie for her, and she tried to stuff the whole thing in her mouth at once and got choked.  I have to remind her to sip through the straw of her drink and not just chew on it.  She wanted to hold hands, but she squeezed my hand so tightly that I thought she might break a bone.  Still she tried to grab my hand and would  press her lips together and grip as hard as she could.  She is still very strong and she can inflict pain.

And this is where the guilt comes.  I cherish my Mother.  Despite the horrors of the dementia, I enjoy most of my visits with her.  There is still her presence that I don't want to give up.  Yet, there are days when I wish the struggle might be over.  I don't want to lose her, but sometimes the struggle, the loss of who she is and was is overpowering.  Sometimes her life seems full of joy, and sometimes nothing but misery.  The emotions clash and roll through me.  And on the days when I wish the battle was done, I feel guilt beyond measure.  Even confessing to these emotions generates guilt, but they are real emotions and denying them doesn't make them disappear. So, perhaps acknowledging them and knowing that at the core of it all is love will help ease my struggle. But both Mother and I will continue to struggle in our own ways.

Calling the Doctor

Placing Mother in the nursing home was a wrenching experience.  It was the worst for her; she had to leave her home and she did not go willingly.  It was difficult for us because we had to take her away from the home and land she loved.  What I didn't realize was that in many small ways living in a nursing home, takes away control from the family.

Mother's hand has become more and more contracted.  She now wears a brace, but despite repeated training, the staff seems to unable to get it on correctly.  Nor do they have her wearing it according to the schedule set by the therapist.  Even worse has been the fact that the therapy service provider is not communicating with us despite two meetings where we asked to be notified of changes in Mother's therapy.  After months of trying to work with the therapy provider at the local level, I finally went to the supervisor at the home office.  Now, we have had better communication; however, I have very little confidence that this will last.

Not being able to receive appropriate therapy is difficult, but I am a persistent advocate.  What cuts at me most is the fact that in a nursing home, the family is not truly brought into the loop.  Now Mother needs to have a botox shot in her arm to help release the contraction in her hand.  I want to go to the appointment with her, but I can't call the doctor and make the appointment.  I tried.  I have to tell the social worker when I can go, then she has to make the appointment and call me.

This works for any medical service Mother needs.  When I have a question for her primary care physician, I am supposed to go through the nurse at the home.  I understand that it lets the staff know everything that goes on medically with Mother, but I never dreamed that by placing her in the nursing home we were giving up a level of involvement and control over her care.  If the process worked well at the home, this might not be an issue, but often it does not work.

Mother had a deep cough for days before I finally got the nursing staff to call the doctor.  They would go back to check on her and for the three minutes they were there she wouldn't cough, so they didn't think there was a problem.  I had to insist that she needed to see the doctor, and then it took two rounds of antibiotics to clear up her cough and infection.  I complained to the head nurse.  I got promises.  But what I want is good, consistent care for Mother, and I want to be in the loop.  I want to be informed, and I want to be listened to.

Other families may admit their loved ones and let the staff and home make the decisions. That is fine. We don't work that way.  Mother has to be in a nursing facility, but that doesn't mean we will warehouse her.  We are a part of her life, and we are the watchdogs over her care.  So as frustrating as it is not to be able to call a doctor, I will persist, and I will continue to wedge myself into the process hoping to get the best care for Mother that is possible.