"You are bad, bad, bad!" That's what mother was saying with her lips pursed while shaking her finger at me. She was very upset with me, and even yet she can give a good scolding! Sometimes with Alzheimer's disease it is difficult to distinguish the petulant child from the mother who is unhappy with her child's behavior. This time it was both.
Mother had a sweatshirt lying on her bed that was not hers. Checking the tag, I noticed that it belonged to her suite mate. When I picked up the sweatshirt, Mother started in with "what are you doing - that's my shirt." Nothing I said would dissuade her. As I left the room with the sweatshirt to return it, I could hear her scolding me and protesting. She was childlike in her believing something was "hers", but she was also an angry mother whose child was not doing what she wanted her to do.
It is a fine line to walk sometimes, that line between still being her child, and yet playing the "parent" role of making her floss her teeth, limiting her chocolate, and making her return things that are not hers. I thought maybe it would be easier to do. But there is something in that wagging finger and the accusation of "being bad" that still resonates in the back of my mind. I felt guilty for upsetting her because her belief in her ownership of that shirt was real. That is the problem with Alzheimer's; one's reality changes. Sweatshirts or relationships, it all becomes as tangled and scrambled as her mind, and we are all a part of it.
Tuesday, January 24, 2012
Monday, January 16, 2012
I Like It Here
For much of her life, Mother lived in the fishbowl of small communities as a minister's wife. When that life ended, she eschewed much of her previous social life and chose to live quietly in the woods keeping up only with family and a few close friends. She liked the idea of being a "hermit," and in the early stages of Alzheimer's this drawing away from others became more pronounced until she had no real social contact outside of family. So for this very private woman, learning to live in an institution was a major life change.
What is amazing to me is that Mother has adjusted to nursing home life, but she can still play the role of the minister's wife. It is so ingrained in her that even in the depths of the disease she can move from group to group greeting people. Sunday as we walked the halls, she waved to staff and residents who called her name; her best smile - a real smile- on her face. She walked up to individuals and shook their hands and asked how they were. She introduced me to everyone - again- but with the best of manners. Gone were the grimacing looks, the hateful comments, the coarse asides. She was happy with the adulation of her friends and the staff. "I like it here. They like me," she grinned. I was escorting a queen down the hall in her red gripper socks, swinging her hips and happy in her realm.
What is amazing to me is that Mother has adjusted to nursing home life, but she can still play the role of the minister's wife. It is so ingrained in her that even in the depths of the disease she can move from group to group greeting people. Sunday as we walked the halls, she waved to staff and residents who called her name; her best smile - a real smile- on her face. She walked up to individuals and shook their hands and asked how they were. She introduced me to everyone - again- but with the best of manners. Gone were the grimacing looks, the hateful comments, the coarse asides. She was happy with the adulation of her friends and the staff. "I like it here. They like me," she grinned. I was escorting a queen down the hall in her red gripper socks, swinging her hips and happy in her realm.
Sunday, January 1, 2012
Lonely
This is the first year that Christmas has had no real meaning for Mother. The trees were pretty, the inflatable Santa on the yard was exciting, the packages were fun for a minute, but there was no real sense of holiday. Everything was in the moment except her sense on loneliness.
Several times during the holidays, curled up on her bed with her head tucked down, she told me she was so lonely. It is true that one can be surrounded by people and yet be incredibly lonely. She craves conversation, but that is almost impossible. I talk with her, and like a very young child, she takes it as conversation. But there is no real meaning and there is so little I can do to alleviate her loneliness. We walk to the indoor aviary or stroll down a hall. We play catch with a small, soft ball. We watch TV together.
It isn't enough, but it must do. She has long hours, yet time doesn't move for her. A few family members visit now and then. I visit almost every day, yet the loneliness continues for her. She can't remember that we were there, so to her the loneliness is primary. She is trapped in it. And I wonder how often this scene is repeated in the home, in the city, in the state, in the nation, and in the world. Old people, once so beloved and so involved in the lives of family and friends sit alone and are lonely. They are not who they were, and visiting them can be very difficult. But still the essence of who they were remains. Their presence is still real. They are still human beings who need to be loved and touched and kissed. I sometimes despair that Alzheimer's takes the memory of visits and love from Mother and leaves her lonely. Perhaps I too will have to learn to live in just those moments with her and make them enough.
Several times during the holidays, curled up on her bed with her head tucked down, she told me she was so lonely. It is true that one can be surrounded by people and yet be incredibly lonely. She craves conversation, but that is almost impossible. I talk with her, and like a very young child, she takes it as conversation. But there is no real meaning and there is so little I can do to alleviate her loneliness. We walk to the indoor aviary or stroll down a hall. We play catch with a small, soft ball. We watch TV together.
It isn't enough, but it must do. She has long hours, yet time doesn't move for her. A few family members visit now and then. I visit almost every day, yet the loneliness continues for her. She can't remember that we were there, so to her the loneliness is primary. She is trapped in it. And I wonder how often this scene is repeated in the home, in the city, in the state, in the nation, and in the world. Old people, once so beloved and so involved in the lives of family and friends sit alone and are lonely. They are not who they were, and visiting them can be very difficult. But still the essence of who they were remains. Their presence is still real. They are still human beings who need to be loved and touched and kissed. I sometimes despair that Alzheimer's takes the memory of visits and love from Mother and leaves her lonely. Perhaps I too will have to learn to live in just those moments with her and make them enough.
Tuesday, December 27, 2011
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.
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.
Sunday, December 18, 2011
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.
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.
Monday, December 12, 2011
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 toBethlehem to sing good news
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
Monday, December 5, 2011
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.
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.
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