Guilt.  It is a new experience for me.  I've never been one to carry a lot of guilt.  I've felt very bad about some of the things I have done in the past, but usually I learn to forgive myself, make amends and move on.  I have not understood the complex emotions associated with guilt, but I am learning about them now.

I feel guilt about Mother being in a nursing home.  I feel guilty when I walk into her room and find chocolate ice cream on her chin; I feel guilt when Mother feels lonely.  In fact, there is very little about Mother's life right now that I don't feel guilty about.  My head tells me that I did not give her this disease.  I know that she has to be in a facility where she can have 24/7 care and someone awake and watching out for her.  I know that she needs locked doors and an ankle bracelet to keep her safe.  I know that her awareness levels are not what they used to be, but that does not lessen my feeling of guilt.

I feel guilty that I can't keep her at home.  I feel guilty when she tells me how lonely she gets.  I feel guilty when she doesn't like the food.  I feel guilty that she has multiple urinary accidents each day and has to be changed often.

My conflict seems to stem from the fact that I cannot control the quality of her life.  I can't change where and how she lives.  I can't make it better, and I want to make it all better.  I want her to have the life she had.  I want her to smell like home and not THE HOME.  I want her to be able to sit outside without being afraid.  I know that the sense of guilt is not rational, but I can't make it go away either.  I am her daughter.  I'm responsible for honoring her and taking care of her, and I want it all to be better.

Here but Gone

Mother greets me with the words, "Mama, mama, mama."  She reaches out her hand and asks for a kiss.  I hug her and kiss her cheek.  She eventually remembers who I am.  I am becoming used to her calling me mama when she is stressed.  At those times she is such a little girl, and at times in her mind I have become her mother. I brush her teeth, I  bring her cups of tea, I tuck her in.

This is one of the most difficult things for me.  The role reversal.  It feels so strange to have the woman who was my caretaker and comforter now need so much from me.  In that sense, I think my Mother is gone.  The woman lying in the bed looks like my mother, but she is no longer "Mother."  She can't ask how I am.  She can't ask how the children are.  She can't ask what books I am reading.  She can't interact and relate.  I have to keep the memories of her fresh because although her body is still here, her mind and her personality are gone.  My sister who lives several hours away said she wanted to come see Mother because she misses her.  I told her that even when she comes, she will still miss Mother because she is no longer here.

Music and Dementia

http://abcnews.go.com/Health/AlzheimersCommunity/alzheimers-disease-music-brings-patients-back-life/story?id=16117602#.T4bWHJkvkUU

This ABC News story chronicles how music affects Alzheimers patients.  I see this every day in Mother and the other residents.  Even the most withdrawn residents perk up when there is a music group singing or when the karaoke is going.  Mother actually smiles, dances, claps her hands, and the music truly lifts her spirits.  We keep a radio by Mother's bed, and we often sing together, which makes her happy.

There is one man in the Alzheimers unit with Mother who listens to his music every day after lunch.  He can barely speak, he sleeps almost all of the time, he is confined to a reclining wheel chair, yet when his music is playing he sings!  He moves his hands.  He experiences a real joy.  I love walking by his room and hearing his mumbled words and watching him swing his hands.  He's having a great time.  Music does bring the dementia patient alive!

Like a Child

Mother's behavior becomes more and more child like.  This past week she had one of her most lucid days in over a year, but the next day she threw a tantrum about taking her medicine.  I didn't get to witness the tantrum, but the evidence was all over her face.  Most of her medicine is crushed and put into a paste, but there were streaks of orange something across her forehead.   She had rubbed the same orange concoction in her hair.  I hadn't seen anything like that since the children rubbed their baby food in their hair as they were beginning to feed themselves.  In the laundry I found a shirt with pieces of have chewed pills dotting the sleeves. The aides said it had been quite a struggle to get her to take her medicine.  She had spit and fought against taking her pills.   It is difficult to understand how her mind can be so lucid talking about her favorite restaurant one day and then the next be so absolutely infantile. She eats with her fingers more and more.  Even ice cream is dipped with her finger and then sucked off.  She stuffs her mouth and cheeks with food as she eats and has to be reminded to chew and not overfill her mouth.  More and more Mother is becoming like a small child.  But in an adult this behavior is so difficult to deal with.  There is no way to teach her better.  There will be no improvement.  There will only be more decline. It is difficult to see such child like behaviors in this once elegant woman now chewing the corner of her blanket with food and medicine streaking her hair. I leave the nursing home on such days drained and bewildered.  I don't know what to do.  I think that love should cure this, but it doesn't.  Love just wipes the mess out of the hair, puts the spoon into her hand, changes the wet clothes and rocks her when she cries.