Disappointed

Perhaps "disappointed" is an understatement.  Really, I am angry.  I know that running a nursing home and taking care of Alzheimer's patients are two of the most difficult jobs there are.  But frankly, I was hoping that the professionals had more of a clue.  I am gritting my teeth this morning and will have to address the issue with the administration when I am not quite so angry.

Of course, as a person with Alzheimer's, Mother has no self-control.  She says what she is thinking.  She acts like a naughty 4 year old most of the time.  So why would a RN give Mother - an Alzheimer's patient who LOVES chocolate- a whole pound of chocolate at once?  I ask you, would you give a 4 year old that much candy and then leave her to it?  Mother ate the whole pound of candy in 30 minutes.  Then she was sick.  The RN came looking for Mother and the chocolate later in the day and was surprised that it was gone.  Really?  Why should that surprise her?  Mother grabs a candy bar out of your hands and tries to eat it wrapper and all.  Mother has sat in the Rn's office and gobbled candy from the dish on the desk.  I know the candy was meant as a kindly gesture, but what was this woman thinking?  This was not a gift that was good for Mother.  When I visited Mother she looked sick and complained of her belly hurting.  I found out that last week she was getting up to 3 cans of soft drinks a day too.  It is time, once again, to have a talk with the administrator and the RN and let them know that giving Mother that much junk is not good for her.  I'm OK with a soft drink a day and some occasional candy, but not this massive amount of sugar.

The moral of this story is that if you have a loved one in a nursing home, visit several times a week at different times of the day.  Talk to the CNAs and the other staff and ask questions.  Keep in touch with administrators and let them know of your wishes for the care of your loved one.  Even too much candy and sugar can constitute a kind of abuse.

Sweet Lies

As a child, lying to one's mother was such a grievous offense that it merited the worst of punishments.  I learned the ethic so well that as a rule I don't lie, but I lied today, and worst of all I lied to my mother.  Even though the little "guilty" bells went off in my head, my heart knew it was a small series of sweet lies that simply averted the grief the truth would have brought to her.

Today Mother was sitting and watching MTV, and while we watched some program about teenage mothers, she ate her orange and talked about the people from her past.  She said she had had a visit from her cousins, Glen and Lyle, and that they had had such a good time.  I asked some questions and acted like I was pleased that they had come to visit her.  Lyle died in WWII and Glen died several years ago.  I didn't tell her they were dead - essentially a lie.  She was so excited by having had a visit with them.  Perhaps she did - I would not like Scrooge try to deny the presence of any Christmas spirit - but the rest of the details of the visit were mixed up in accounts of the Vietnam War and wives and children they never had.  But she was happy.

She asked about my father - dead many years.  She wanted to know how he was doing and what he looked like now.  I lied again.  I named the town where he "lives" - rather where he is buried, and I made up the rest.  She was pleased.  So many times we've told her that he is dead.  It just makes her cry and mourn all over again, so today I lied.

She asked about other friends and family so long gone.  But I lied and we talked about them as if they were still here.  And what I've learned is that they are still here in her mind.  They live and breathe and have new adventures and can have lives that she makes for them  It brings her great joy, and so I will continue the sweet lies told out of love.

Hark the Herald Angels Sing

Christmas is truly celebrated at a nursing home.  There are beautifully decorated trees everywhere, all kinds of Santas and Nativity scenes, and most of all there is music.  So many groups come in to perform for the residents, and their musical gifts make the season all the brighter.

Mother loves the music, and she loves to "dance" to it. Her dancing consists mostly of swaying and wiggling her hips. Once in a while she will try a twirl, but that usually leads to her yelling "whoa Nelly!" and having to sit again because she made herself dizzy.

Last week she was very emotional.  A local high school show choir came to sing.  Mother cried loudly through most of the performance.  Her face turned red, the tears flowed, she chewed up her tissue, and she was just beside herself with emotion.  All of those young people singing just swamped her emotional capabilities, but she loved it.  Of course she thought the boys were her grandsons and tried to call out to them.  Those young men were so kind to come to her and hold her hand for a moment.  What amazed me was her ability to collect herself after the program and thank the director for coming to sing.  For that brief second her manners showed through all of her emotion. 

Today I sat with Mother and some of the other residents as they listened to a man play his keyboard and sing.  As I looked at these residents, so diminished from who they once were, their faces beamed, and they did their best to sing along to Away in a Manger and Rockin around the Christmas Tree and Jingle Bells.  They sat together and held hands bringing comfort to each other, and all the while Mother danced around them and was happy.  I think I know why the angels were sent to Bethlehem to sing good news.  Music is the language that reaches us most deeply, and even in the depths of dementia one can sing and rejoice and be happy.  If just for a moment, we can have love and joy.

Buttons

The cycle of good days and bad days continues.  What amazes me is my own adjustment to her condition.  There are times, the good days, when I think to myself, "Well, she really isn't that bad."  Denial.  But when I see her every day, it can be difficult to keep my perspective.  I become accustomed to her ways and her behaviors. 

But once in a while, the perspective comes into a harsh focus and can't be denied.  After Thanksgiving I was looking through the old photo albums and came across photos of Mother as herself before the disease took its toll.  I cried.  I cried to see her whole and laughing a real laugh, not the Alzheimer's forced he, he ,he that she has now.  I cried to see her in her garden smiling and vibrant.  I cried to see her hugging the grandchildren and great grandchildren who she is forgetting and can't quite place.  I cried because in viewing those photos I had to admit how profound and irreversible the changes are.  I had to close the album.  It was just too painful.

The disease has unbuttoned her mind.  More and more memories are being unbuttoned and float away.  What is left is a more and more primal brain.  Last week Mother chewed all but one of the buttons off of her pajamas.  No one can find the buttons, and we suspect she swallowed them. It is like that with her whole life at this point. She is hanging together by one button, and that is hanging by a lose thread. The disease is swallowing her whole.